Spina Bifida Kids

Online Q & A with Dr. Mark Levitt

2012-02-10T13:06:00.001-08:00

Live Online Q&A

with Dr. Mark Levitt
Hosted by: Cincinnati Children's Hospital

Wednesday February 22, 2012

7 p.m. EST

Hello Friends,

We know how challenging and frustrating dealing with fecal incontinence related to spina bifida can be. On Wednesday February 22, 2012 at 7 p.m. EST, Cincinnati Children’s Hospital will be hosting a LIVE ONLINE Q&A with Dr. Marc Levitt.

Your questions regarding fecal incontinence will be answered in a small, private session along with other families who are coping with the same medical condition.

Remember, you don’t have to suffer in silence. We can change the outcome together.

This is Dr. Levitt’s second online Q&A, and If you didn’t get a prior reply, this live online Q&A is a great opportunity to ask Dr. Levitt any remaining questions you may have about fecal incontinence.

The Moderator for this PartnersHub Live event will be Teri Martini, RN BSN. Teri is the Program Manager of the Colorectal Center for Children, with more than 10 years experience as an RN in gastroenterology and colorectal care.

Here’s how you can participate:
Click eventbrite.com/event/2912706985 to visit the CCH Eventbrite page and RSVP for the live event. Or join us on the day of the event on the Colorectal Center for Children’s Facebook page: facebook.com/CCHMCColorectalCenter?sk=app_296885033663887

For more information about the Q&A with Dr. Levitt, you can reach Dillon at (310) 569-6858 or email: dwilson@partnershub.com.

Courage in sports: Wheels

2012-01-09T21:36:00.000-08:00

A New Perspective

2011-12-31T09:01:00.000-08:00

I can't believe I am posting this, but I am trusting the pull on my heart that I should.

This journey has truly given me a new perspective on THIS life, and I have been blessed beyond measure every day since we found out about Brooklyn's diagnosis. Her strength, her determination, and her spirit are truly gifts that I needed in my life.

However, on hard days, when my heart is heavy and starts to want answers I will never get, I have learned to choose a heavenly perspective. To picture what eternity will be like. Although I am careful not to dwell on it -- there is much happiness to be had right now -- sometimes it helps to remember that any sadness that comes along with this journey is temporary. I don't know how many of you have Faith, but I can tell you that I don't know how I would get through this journey without it.

I wrote this a few weeks ago. It is with a humble heart that I press "publish." I truly hope it provides encouragement or, at the very least, a new perspective.

Happy New Year, my friends!

~Lisa @ Heaven Sent

In His Presence

The first thing she felt was the grass tickling her feet. It was cool, yet inviting; each blade soft to the touch, but firm enough to find its way between each of her toes. The sensation, she realized, was new. She didn't want to open her eyes -- not yet. Something made her want to savor the feeling for just a little while longer.

She stretched out her left leg and felt the tickle crawl from her feet to her ankle, up her leg, until it stopped at her knees where her dress began. She then stretched her right leg, taking the time to lengthen it ever so slowly.

Savor.

The weight of her legs was now making imprints in the soft grass, grounding her, yet the feeling pulsing through her body made her want to fly.

She opened her eyes. The light before her was blinding -- blue and white with flecks of golds and silver. Even in its brilliance, it was mesmerizing, drawing her in and making her see more clearly.

And that's when she saw Him. He had been watching her the whole time. He too had been waiting for this moment. The smile on His face mimicked the feeling spreading throughout her whole body.

Pure joy.

Their eyes met, and He nodded. It was time.

She looked down at her new body and slowly bent her knees, using her hands to push her legs up, until finally she was standing. The movement was graceful, easy. As if this was how it was always meant to be.

She looked back at Him, eyes wide, and He held out his arms. Her first step was careful and slow, but as she felt the weight of her body on the lush ground beneath her, she began to walk faster and faster, until finally she was running. Running as fast as she could until she fell into His arms and thanked Him. Over and over and over.

Thank you.

As they pulled away, His hand touched her cheek and He searched her eyes for any questions. She had none.

He smiled again.

His arms invited her to leave if she wanted to. As she looked around, she saw that some were dancing, leaping, while others sang in unison. Their praise permeated the air, creating new breath. She inhaled.

She saw others walking through the fields, laughing and talking; children skipping and running; the flowers swaying to the rhythm of their joy. Her soul warmed.

Then she saw those gathered at His feet -- peaceful and still -- and she knew where she wanted to be, just for a little while longer.

She slowly bent her knees, lowering her body back onto the grass, and simply sat in His presence. As if this was how it was always meant to be.

(Copyright, Lisa Bonnema, 2011)

************

And I heard a loud voice from the throne saying, "Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 'He will wipe every tear from their eyes. There will be no more death' or mourning or crying or pain, for the old order of things has passed away.”

He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."

He said to me: "It is done. I am the Alpha and the Omega, the Beginning and the End. To the thirsty I will give water without cost from the spring of the water of life. Those who are victorious will inherit all this, and I will be their God and they will be my children."

Revelation 21:3-7 NIV

************

Study

2011-12-09T06:19:00.001-08:00

I received the following comment on my personal blog and I thought I would pass the information along...

Hi Mrs. Henn,

I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

Warmest regards and happy holidays,

Courtney

Q & A with Dr. Levitt

2011-11-24T11:10:00.000-08:00

Q & A with Dr. Mark Levitt

November 30, 2011

7 p.m.

Dr. Marc Levitt, Director of The Cincinnati Colorectal Center for Children, will be holding an online Q & A relating to fecal incontinence due to Spina Bifida, and he will be explaining the Bowel Management Program he has designed to battle this difficult problem.

RSVP: eventbrite.com/event/2504065728

My favorite part of a "holiday" that I don't like

2011-10-31T22:18:00.001-07:00

The Karate Kid, Rocky, a butterfly, a snow princess,
and a moody teenager doing his homework on the stoop.

Something melodramatic by Trans-Siberian Orchestra filtered through the speakers as Esther-Faith crawled to the playroom. She hadn't finished her white hot chocolate. She didn't even eat any of the candy she collected from the neighbors. Tim watched as she gingerly crawled to the middle of the floor, put her feet underneath of her body, and slowly stood up. It took many tries. But without the assistance of any of her equipment, she stood up.

And then, she just stood there, watching her reflection in the sliding glass door. Her cousins and brothers ran around her playing, laughing, and enjoying the chaos of the night. But she just stood. Occasionally she lost her balance. She would teeter forward or back. Sometimes falling all the way to the ground with a thud. But she always got herself back up to standing.

And then, ever so slowly, she moved her arms to first position. Holding them still in front of her body, she waited for her balance to catch up. Then, gracefully, she stretched her arms out to second position. Tim stood next to me in the dining area. Two of the three boys had heaped more sweet and sour noodles into their bowls. Auri was taking more sips of her hot chocolate.

Watching her own movement in the reflection of the glass, she slowly and gracefully set her arms into third position. Then fourth. And finally, fifth. Just before losing her balance and crashing to the floor again.

Unaware that we were watching, in an awkward gentle motion, she put her feet back under her body. Willing her orthotics to do what she wanted them to do. She slowly and comically got to standing again.

Already brimming with emotion of tough choices and hard decisions, I grabbed my sister's arm and started to cry. Tim grabbed the camera and moved into the play room determined to capture her remarkable tenacity on film.

She moved slowly but fluidly through the arm positions of the five basic ballet positions again and again. Tim knelt in front of her encouraging her when she fell or helping her focus when her balance threatened to interrupt her practice.

Esther-Faith will start real ballet in January. Actually, all three will start ballet in January. I've been searching for a few months for an dance studio that will teach my daughter ballet without putting her into a "pity" class or just appeasing my request in the name of compliance. I want her to learn how to dance. For real. Because SHE wants to learn how to dance. For real.

So, I contacted a few dance studios. Dozens maybe. I heard "no" a lot. I heard "we've got a wheelchair class" a lot. I heard "have you tried such-and-such" a lot. And I got tired of explaining that I wanted her in a class with other children learning ballet. That I wanted her to work. That SHE wanted to work. That she loves to dance, and I want to give her the opportunity to learn to dance.

Eventually, I found a well-established studio with an adaptive specialist who would be available to help Esther-Faith learn to the best of her ability. They never offered a different class. They didn't tell me "no." And most importantly, they understood that Esther-Faith wants to be a ballerina, but that it might just look a little different.

They are excited to have her. She is excited to go.

When we talked about Esther-Faith taking "real" ballet classes, Isaac decided that he would also like to take ballet in addition to more tap. And then Isaiah, the teenager, said he wanted to take ballet, too. So in January, all three of my children will begin ballet. At three different stages in their lives, and for three different reasons.

But really, Esther-Faith's education has already commenced. She has started memorizing the vocabulary. Pas de bourrée. Pirouette. Pas de chat. She often convinces her dad to lift her into the air. She gets books about ballet from the library.

And she practices.

It is more difficult for her. More strenuous. More work. But I think, also more beautiful. Because I know what it takes for her to even stand at all, let alone stand in position. I know what it takes for her to move her body a certain way, let alone do it gracefully. I know what work it is for her to just try.

Eventually, I moved to the play room, too. And so did Auri. The girls moved through the positions together. Auri grabbing Esther-Faith's hand at one point to keep her from falling. Convincing Daddy/Uncle Tim to set down the camera and lift them both into the air.

As they danced, I moved slightly away. The music was loud. They were moving their bodies. Dancing. Playing. Enjoying the evening and each other. And she did it again. After months of not, she took three tiny steps into my arms.

Those positions. Those smiles. Those steps. They make my heart so happy. So full of joy. So full of hope. She may never play Clara or Cinderella or Odette. But she will dance.

And it will be amazing.

Celebrate

2011-10-10T16:07:00.000-07:00

I was quickly scrolling through the "United by Spina Bifida" and the "Take That Spina Bifida" groups on facebook before I had to turn my attention to homework and nighttime routines. I get maybe five to 10 minutes a day to catch up with people who I consider friends and co-travelers on this journey.

Tonight, I saw post after post after post of babies, children, and adults doing things that they were cautioned (and some told outright) wouldn't happen. Adults blowing off steam doing something they love. Children standing by pumpkins. Babies beating the odds.

And I was immediately moved to tears.

It doesn't take much. But what struck me was that I was looking at photos of children and parents doing normal things, but when I really looked, I realized that these normal, everyday experiences were anything but. Because watching your child walk into a field to pick a pumpkin when you thought he wouldn't walk is worth celebrating. Because watching your friend who has been through dozens of surgeries give birth to a baby is worth celebrating. Because realizing that a baby that was close to death two weeks ago is thriving today is WORTH CELEBRATING!!

I know it is Spina Bifida Awareness Month and that there is a lot of educating going on, but I think there is even more celebrating. And I love it.

An Easy Spina Bifida Awareness Project

2011-10-08T13:43:00.000-07:00

	I love seeing everyone's ideas for spreading awareness during Spina Bifida Awareness Month! Here's my little idea. It's quick and easy, and if all of us did it, it could reach a lot of people. Let's all send a "letter to the editor" of our local newspapers. (See letter below.) We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I did and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions. Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom. Subject/Headline: Learn something about Spina Bifida in October To the Editor: October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States. What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges. What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin. What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be. What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different. If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org. Full Name Address E-mail address Daytime phone number Join in the Facebook event to report back with which newspapers you submitted your letter to!

I love seeing everyone's ideas for spreading awareness during Spina Bifida Awareness Month! Here's my little idea. It's quick and easy, and if all of us did it, it could reach a lot of people.

Let's all send a "letter to the editor" of our local newspapers. (See letter below.) We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I did and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions.

Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom.

Subject/Headline: Learn something about Spina Bifida in October

To the Editor:
October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States.

What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.

What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.

What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.

What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.

If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.

Full Name
Address
E-mail address
Daytime phone number

Join in the Facebook event to report back with which newspapers you submitted your letter to!

https://www.facebook.com/#!/event.php?eid=258191650891471

Calling All Spina Bifida Friends/Family!!

2011-10-02T09:57:00.000-07:00

For many, SB Awareness means promoting possible preventions and making sure every woman of child bearing years is on the folic acid train. Which is fine in some ways, but not really to us! You see, Gretchen and I were amongst those that did everything right during our pregnancy and we still have a child with Spina Bifida. So many times we see those campaigns and ads, and to us, they feel like they are pointing fingers. That is NOT what Spina Bifida Awareness is about!

To us, Spina Bifida Awareness is far more positive and inspiring! The darkest part of our Spina Bifida journey was the days and weeks after diagnosis. There are SO MANY unanswered questions, so many unkowns, and so much false information given (even at times by doctors!) that this time was a corridor of darkness. Our hope is to bring inspiration & hope to those walking in that corridor. We hope to share the knowledge that people with Spina Bifida are PEOPLE with wonderful, full, blessed lives. Our prayer is to bring HOPE to each person, hope that even though this is not the path you would have chosen per say, it is a path worth journeying on.

To do this we need the help of our Spina Bifida family, and this is where you come in!!!

Each day of October we want to share a story of hope, inspiration, validation, overcoming difficulties or accomplishing victories from our Spina Bifida family. Also, we would each like to do a "Day in the life of" feature, once a week on our blog! (BTW, if you don’t know us, then you might not know this, but just living a life that SB touches, makes you part of our SB family!) We would LOVE to have you send us a story and a picture to go along with it that you think would further this cause of Spina Bifida awareness. Each day of October we will post one, and through this project pray, we bring the awareness that goes so much deeper than folic acid and prevention (and please hear us, those are important, but they are not the whole picture!)

If you would like to be part of this project please send an email to simplysoares@att.net or trw0224@gmail.com that includes:

~Your name, and a little bit about how Spina Bifida touches your life (Do you have it? Are you a parent of a SB child? Are you a Grandparent? Does someone with SB touch your life regularly and you feel lead to share?)

~The story you would like to share.

~A picture or a few pictures to accompany the post.

~A link to a personal blog or web site if you would like it included with your story (no product or sales sites please!)

~An email for us to contact you at.

We would love to hear from ANYONE whose life is touched by Spina Bifida. We want to include as many views as possible. Are you an adult with SB? Are you married to an individual with SB? Are you the coworker, pastor, employer or dear friend of someone whose life is touched by SB? Are you the grandparent, aunt, uncle or cousin of a child with SB? Are you the sibling of someone with SB? We would love to hear your story! I think you get the picture… We want to hear it all!

If we are blessed enough to receive more than 31 stories, we will continue to feature the stories on our blogs, weekly until they have all been told!

These stories will be featured on http://simplysoares.blogspot.com/ and http://atalw.blogspot.com/….. until they have all been told! (and how cool would it be if this just went on and on and on??)

Please participate with us! We would love to hear from you!

-Gretchen Soares & Tiffany Whalen!

Long (and promising) day at clinic

2011-09-26T19:43:00.000-07:00

Our check-in time for clinic was 8 a.m.

Mimi came over to see the boys off to school so we could head to the hospital early.

Earlier in the week, our appointments were confirmed. We would see the social worker, urology nurse, neurology nurse, occupational therapy, physiatrist, and some others. We also found out that her renal ultrasound (we have one almost every clinic appointment) was scheduled for 3 p.m. From the outset, it looked like it was going to be a long day.

Once we got to the hospital, got checked in, and started the process of answering what feels like 1000 questions about the last six months of Esther-Faith's life, we got word that there was a cancellation in ultrasound and Esther-Faith was going to have her renal ultrasound at 9 a.m. instead of 3 p.m.

Sigh of relief.

BIG.

So, 30 minutes from her (new) appointment, we pushed fluids. She needed a full bladder to get good scans.

Some folks who we were not scheduled to see stopped in for social visits or just to catch up. One of those people was Brett--the wheelchair tech. Not only is he AWESOME at his job, he is also just a great guy. We shared books we've been reading. Our goals for Esther-Faith. She shared how much faster she wants to go. So, Brett went to his car and got an ultra-light, multi-purpose (can be used for every day or racing) PINK wheelchair for Esther-Faith to try. It did not have a seatbelt or tippers.

She loved it. L.O.V.E.D it.

Here she shows off her wheelie skills for Brett.

While Brett retrieved the fancy, new wheelchair, Esther-Faith and I headed to ultrasound.

The ultrasound tech was SUPER, VERYMUCH, ULTRA thorough. Don't get me wrong, I appreciate thorough. But seriously, they're not allowed to tell us anything, Tim was waiting back in the clinic room, and the minutes were dragging into an hour. Picture after picture after picture. Not by me, after the first couple of minutes, I forgot I had the camera. I just stared at the black and white screen-- not completely ignorant of what I was looking at, but still more confused than sure. I asked annoying questions. (I know, because she kind of rolled her eyes at me.) After a (really) long time, she gave me a catheter to empty Esther-Faith's bladder so she could get post-void pictures. Some more time (and lots more pictures) later, we packed up and headed back to Tim.

You'll never guess who was waiting when we got back... NICK!

Nick (who makes her orthotics) is Esther-Faith's favorite person at clinic. She thinks he makes a great dance partner. And in the morning when we were getting ready to go, she said she wanted to see Nick "first and last." In other words, she wasn't willing to fit anyone else into her busy clinic schedule.

After Nick, we met with the OT, the developmental pediatrician, the neuro-psych doctor, the pediatric resident, the urology nurse, the physiatrist (and her crew), and the neurology nurse. She hid from more than a few of the doctors.

I think one of the reasons Esther-Faith has never met a stranger (and why we're having such a difficult time teaching her stranger-danger) is because of appointments like this. Where there are lots of the same doctors she sees from clinic appointment to clinic appointment, but even MORE that she'll see once in her life, but that we ask her to allow to touch her feet and legs, check her shunt, ask her personal questions, and force her to be polite and accommodating.

I get it, they're learning to be the doctors of tomorrow, but for today, it seems so contradictory to tell her to be wary of strangers--oh but wait, not these ones. Or those ones over there. So, I'm left with questions about how to teach her stranger-danger while learning to trust the right people.

Some good news... and some great news.

The good news first: Esther-Faith will be participating in a clinical trial that will--over the course of a year--test for markers in urine that indicate a serious infection. She will also be testing a new, single-use (but more expensive) hydrophilic catheter for the duration of the year to determine if the incidence of UTIs goes down. Her catheters will be supplied (yay) and she'll have her urine tested periodically. We're all about finding new products that will help other SB patients!

The GREAT news: After talking to the neurology nurse about her symptoms, undergoing some simple tests, and understanding better what we're dealing with, the neurology nurse said that Esther-Faith is NOT experiencing increased tethering of her spinal cord! All SB patients have some tethering (it's the nature of the beast), and some will require de-tethering surgery and some will not. Currently, we are in the WILL NOT category! (Can I get a whoop-whoop?!)

Things can change fast or slow, and we're still learning, but even though it was one of the longest clinic appointments yet, we walked away with eight prescriptions, an appointment for followup testing with neuro-psych, an appointment for wheelchair clinic, and a script for an eight-week OT session, but feeling positive and reassured! (If not a little apprehensive about a racing wheelchair!)

After a quick lunch out, we took Esther-Faith to her favorite destination (Build-a-Bear) for a new friend: SNOOPY.

Take THAT Spina Bifida!

2011-09-24T23:39:00.000-07:00

Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.

I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers.

I'll let the video say the rest.

~Lisa (@ Heaven Sent)

First place

2011-09-19T15:37:00.000-07:00

This past weekend was very busy at the HennHouse. Walk, Run, and Roll. Soccer game. The zoo. Company. Papa's 60th birthday party. Training. Work for mom. In addition to the "normal" stuff we do.

At the Walk, Run, and Roll, Esther-Faith placed FIRST among the rollers. We're super proud of her. Although, she's not really sure what the fuss is about. She likes to go fast. And fast she went. Sometimes holding onto a hand. Sometimes propelling herself. Sometimes doing a wheelie.

The point is, she had fun. First place or last. She had fun.

And we felt so loved to have so many of our friends and family--some in person, some in spirit--supporting an organization that means so much to us.

What about you? Does your local organization have a Walk, Run, and Roll? A Walk and Roll? Any kind of active fundraiser?

I would LOVE to create a post with all of the dates and locations of the races around the country. I think my 14-year-old son and I might just start to travel to run them!


Hanging out with Coach Ryan. Esther-Faith loves Coach Ryan. But when pressed, she will still tell you that she loves Kate more.

Faster! Faster! Faster!

Isaiah ran the 5K in 26:23.
Then he left immediately and played in a soccer game.
I don't think that child EVER gets tired.

Loving on her boy Eamon.

Bagels after the race.

Her preschool friend Nathan.
She was SO HAPPY to see him.

Choosing her first place prize.
A stuffed puppy.
She named it "Pony."

Aunt Kristen got to come to the race this year!
Esther-Faith convinced her to run across the finish line with her.

Take THAT Spina Bifida!

2011-09-16T17:07:00.000-07:00

In the Spina Bifida world, we have a saying. It's said any time a kid takes his first steps, or smiles after waking up from a surgery, or learns to do a backflip in a wheelchair.

TAKE THAT SPINA BIFIDA!

You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.

TAKE THAT SPINA BIFIDA!

We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.

TAKE THAT SPINA BIFIDA!

That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.

Want one? Join the movement! TAKE THAT SPINA BIFIDA!

True Beauty

2011-09-02T20:21:00.000-07:00

One thing I used to mourn when I was pregnant with Toby was how different Gracie's life would be. When we first found out we were expecting we were excited for us as a couple, but we were excited for us as a family more. Gracie would have a sibling and being only 15 months apart would seem to have to guarantee closeness. I pictured days of playing, park visiting, running and all kind of things.

After the dreaded diagnosis day I mourned different things and for different people. But man did I mourn for Gracie. I cried and cried about how different her life would be. How she would have to always be second. How his needs to a degree would always come before hers. How long I would be away from her. How much Toby would need me and how much she would have to grow up.

Parts of what I mourned are true. She did grow up faster. She deals with things as Toby's sister other kids dont even think about. (just the other day she got a chunk of hair pulled out because her hair got stuck in tobys braces when they were playing) She doesnt get to play the same way that some of her friends get to play with their brothers and/or sisters. She does have her mommy taken away more often for doctor's appointments, therapists and things. She deals with more stress when mommy and daddy get stressed about something coming up in Toby's life.

Toby is toby and man we love him, but he's not the easiest brother to get a long with.

And their relationship is lots of love with a little hate mixed in.

But I write this post not to share the woes of Gracie's life. I'm sure I havent even tapped the surface of what goes on in her head with everything. But I write this post to share Grace's beauty.

Toby life has made her more beautiful. Toby has allowed Grace to learn unselfishness faster than I could ever teach her. Toby has taught Grace about serving others. Toby has taught Grace patience. Toby has taught Grace the meaning of true love through tough times. Because of Toby Grace is who she is today. Toby has helped shaped Grace. He has helped make her beautiful. Her spirit is one of the most beautiful that I could ever describe. Toby's life has enabled Grace to learn life lessons few adults truly understand.

I look back at my tears for Grace and smile. Yes sometimes the tears still come, yes sometime its hard on her. But there is a smile through those tears now. (which isnt it almost always that way) Grace is beautiful beyond belief not because of her outward.....but because of everything that is within her.

This post came to my mind and these thoughts more clearly than ever before. For the past week we've been buckling down harder on Toby's back brace and leg brace. Well every morning Grace goes straight to his room and takes it off. I've never asked her to, Toby's never asked her to. She just does it. She gets in his bed and without a word starts to unstrap all the straps. She loves her brother and the older she gets the more she understand that things are harder and more difficult in his life. Today I snuck in and took a quick shot of her. I love this girl.

I hope that as you might be in different stages of this journey that you will remember how our children's lives truly make us and the people around us have true beauty.

For you all with love

2011-08-26T12:40:00.000-07:00

So you know how I like to pretend?

I like to pretend to be a photographer, I like to pretend to be a crafter, I like to pretend to be a teacher.... : )

Well, now I'm pretending to be a graphic designer. Leigh Gibbs DO NOT SHOW your husband or tell him please! :)

I'm just pretending. Anyway I've been thinking about things I wanted to do around my house, but then started thinking about something not so self centered.

I thought, its been a while since I've contributed to the Spina Bifida Community.

So here's my newest contribution

They are just images I've worked up the last couple days on my computer. Do what you want with them or do nothing at all. I was on walmart.com the other day and realized the amazing products that are out there. You can get any image printed on just about anything. Coffee cups, canvas, magnets, You name it, they print it. So I thought this would be an easy way for me to do a project without worrying about shipping you all things : ) we know how good i am at that.

I hope you like.

To view the full image or copy the image click here This is free. I have zero copyrights on them. Feel free to use, and pass around. I'll also put them up on pinterest if anyone is interested.

I do love all you guys and know that I'm thinking of you all the time.

I'm open to suggestions too if anyone has something like this theyd like created.

An apology

2011-08-12T21:45:00.000-07:00

I owe you all an apology. Not just because I haven't posted in a bazillion years -- although I am sorry about that too -- but because I have taken you, my SB community, for granted.

When we first found out about Brooklyn's SB, I wanted to get involved, so I quickly searched around, got to know a few of you, and offered to blog on this site. I was all revved up, posted every Sunday, and tried to keep up on all of your rock stars.

But then reality hit. I started to get scared about some of the things I was reading, and I slowly backed away, somehow believing that I could get through this with my current support system. (They are pretty great you know!) If I am being honest, I thought I didn't need you.

And so I tried to do it alone. I even wrote this post, perhaps to prove how "capable" I was.

I tried to be "brave" and "inspiring" and many times I felt that way, but on the days I didn't, my current support system just wasn't enough. It's not that I was afraid to share my struggles -- God knows that I am honest to almost a fault -- it was the overwhelming sense of guilt I felt for admitting those struggles out loud to people who were used to me being strong. I know that was my expectation, not theirs, but I still felt that guilt. And it hoarded over me and started to silence me. I began to bury my emotions; emotions that started sneaking out when I least expected.

I started to feel like a fraud. My head and my heart were not on the same page, and I didn't know how to deal with that. Nor did I know how to deal with the roller coaster of emotions this journey takes you on. How one day you truly feel you have accepted all that God has blessed you with -- and then the next day you are balling your eyes in the middle of a workout, begging God to give your daughter your hamstrings.

But you, you my wonderful SB community, understand. You understand that a rough patch does not mean that I don't love my daughter just the way God made her. Or that unexpected tears in the middle of a jab-hook-uppercut are just par for the course. I know that now. I know that I need you.

And so I'm sorry. I'm sorry for not posting, for not commenting on your blogs, and for thinking for one minute that I didn't need this community. I do. We all do.

So, yes, I am honest to a fault, but I really felt like I needed to explain myself. So many of you have continued to encourage me as I rode this learning curve, and I appreciate each and every comment you have left on my blog. I know that God brought me to this very web site -- and all of its wonderful members -- for a very important reason...

for healing.

So don't be surprised if I pop up in your comments in the next few weeks. I also hope that this post inspires some of you to visit some of the bloggers listed on the left side of this page, perhaps someone you haven't visited before. Leave a note of encouragement. As we all know, it can make all the difference in the world.

~Lisa (@ Heaven Sent)

Take THAT Spina Bifida!

2011-08-05T12:23:00.000-07:00

~Lisa (@ Heaven Sent)

Sick?

2011-08-01T14:52:00.000-07:00

The constant "snap, snap" of Isaiah taking apart the k'nex Ferris wheel in the other room was soothing as I rocked back and forth with my head in my hands. I had just poured through Proverbs 3 seeking comfort and promise from the scriptures I believe, while simultaneously struggling with worry about my daughter upstairs.

She was sick. For the second time this week. Mysterious, sudden, and scary sick. She wanted the comfort of her favorite movie and her favorite brother. I obliged with both. Isaac wouldn't have it any other way. So, he sat vigil next to her bed while she watched "Cars."

Every time she flinched, grabbed her stomach, grimaced in pain, whimpered in fear, or needed anything, he was at her beck and call. He fetched her anything she needed or wanted. He jumped at each sound. And he did it all voluntarily.

I sent Tim scarce updates via text. I knew he was busy working, and I didn't want him to worry. But an hour before his shift ended, he took leave and made his way home. She had a rough night--up every couple of hours. I had a rough night, too. Barely sleeping. Up every few minutes to check on her. Worrying. At 1:45 a.m. she panicked because I had sent Isaac to his own bed. Isaac, the BEST big brother on the planet, came back to her bedroom and camped out on her floor.

By the morning, she seemed to be back to her old self. Just like what happened on Tuesday night/Wednesday morning. She asked for cereal. And she wanted to play. She didn't seem sick at all.

I've been doing this long enough to know that sometimes what seems like a simple illness is more than it seems. Sometimes, what presents as a virus is a virus. And sometimes, what presents as a virus is an intestinal blockage or shunt malfunction.

And that is what we suspect this time. The sudden sickness. The additional symptoms. The unpredictably of it all.

We'll ask her how she is feeling, and she will answer, "Great!" Even as she clutches her body in obvious pain.

So, every time she is sick, my mind goes to the dark places that borrow trouble from the unknown. I worry about what is and what could be. About getting appointments and tests scheduled. Taking time off work. Getting results. Doing it all alone.

Even as we approach this next chapter in her care, I am aware that we are walking this road together. Last night, as he picked up toys and nervously cleaned, Isaiah kept saying, "Even if she is sick, she will be okay."

His love for her palpable. His worry inescapable. His commitment to his sister and his family unflappable. His trust was in the one who gave the promise I poured through in Proverbs. The boys and I stayed up late watching a movie based on a book they had both read. We checked on Esther-Faith every few minutes. And we prayed a lot.

Because even if she is "just sick" or more than "just sick," we know that in the end, it will all be ok.

Let love and faithfulness never leave you;

bind them around your neck,

write them on the tablet of your heart.

Trust in the LORD with all your heart

and lean not on your own understanding;

in all your ways submit to him,

and he will make your paths straight.

Proverbs 3:3, 5-6

Painting her new pencil box for kindergarten on Wednesday.

Sometimes...

2011-07-11T18:07:00.000-07:00

...things are best said by someone else.

Check out what Roman's mommy (Erica) posted.

It's called "Postcards from Holland."

And don't forget your tissues.

http://fourpotters.blogspot.com/2011/07/postcards-from-holland.html?spref=fb

Scoliosis after Spina Bifida

2011-07-06T22:27:00.000-07:00

My apologies for also being a severe MIA momma! As you may remember, we were expecting a little girl in April. Ellie Reese McGinley arrived on April 8th after a very healthy pregnancy. She was probably the most anticipated little miracle in Little Rock those few weeks by some very special medical staff who took care of the twins birth. I think most of all, we've all been touched by SB and Eli's life and we all wanted to see a happy(er) ending to this chapter. And we got it. I could go on and on about her birth but the main things I want you to know is we were given exceptional care in the delivery room. We had requested old staff from the twins birth to be a part of this birth. And they all came through for us in the operating room, even allowing me to see Ellie, her back, and they gave me assurance that she was healthy. It was a healing birth with what felt like family.

picture of Ellie and Walker (Eli's twin brother)Within the past few weeks, we have been hit hard by what feels like a golf ball pegged us in the head. One night as I was burping Ellie, I noticed her back looked crooked. But being a paranoid momma who knows way too much about SB, I convinced myself that I was being too paranoid and I brushed it off. But when my husband asked several days later if I 'thought her back looked crooked', my jaw dropped and it became real....again. During her 2 month checkup, I asked our pediatrician to look for us. She is a dear friend of ours and held her composure well when I reluctantly asked her. I don't want to be that 'momma' who has to be the paranoid one who asks too many questions. She didn't seem to mind and proceeded to send us to xray for reassurance. The next day, I got the call: Radiology report stated 'Fetal Congenital Scoliosis'.

We were sent to Arkansas Children's Hospital for a repeat scan the next week. Outcome? They are ruling it a 'positional' situation right now because she is not able to sit up or stand on her own yet. But xrays are clearly showing a 20-degree c-curve. We are praying it straightens out between now and the walking stage. But if not, she's still perfect in our eyes. We've dealt with worse. We can handle this.

What are the chances of having a repeat spinal situation? Eli's severe SB diagnosis upon birth hit us hard. This, well, not so much. We hated to hear it but she's here with us and a seemingly happy baby. We will hold our heads up and be thankful for her sweet little life. What a gift she is.

National Conference:

So I owe some of you a very BIG thank you! The Project Eli director, Julie Mayberry, attended the national conference and spoke on Monday evening. She had around 50 in attendance but said through out the conference as she met people and told them who she was and what she was promoting, she received a lot of "I've seen this before!" and "I've heard of this". She's not a blogger but told me it must have been this blog and the connections that you amazing families have on here. To date, the Project E.L.I. documentary has been handed out to 2,000 families, clinics, or physicians! It also has close to 900 hits on YouTube. We are all saving babies lives! Haven't seen it yet? Here's the link to watch the 30-minute documentary on YouTube: http://www.youtube.com/watch?v=FSKgPMv4QPQ

Please know that they were able to do this because of donations and are still relying on donations to make more copies to pass out. If you or your organization wants to help, please check out Eli's First Giving Page:

http://www.firstgiving.com/elimcginley

Eli's birthday is coming up in 4 weeks. He would be 2 years old. We are faced with having to celebrate their birthday again this year, as every year for now on, with only Walker. Its the most dreadful week to celebrate 2 births and a death all in one week. It's getting harder to breath again, as I felt this last year. Please say a little prayer for Eli on August 3rd. And hug your babies tight.

With Love,

Jodie McGinley

http://mcginleybabyjourney.blogspot.com

http://www.facebook.com/teameli

Insights and MIA

2011-07-05T14:06:00.000-07:00

So, sorry I've been MIA for the last two weeks. I've been throwing myself a pity party that so many of my SB mama friends were enjoying the national conference while I dealt with stuff here at home... But you know, yesterday, I saw some WONDERFUL photos on facebook and some blogs that lifted my spirits. Pictures of you. Eating together. Laughing together. Fellowshiping. And having a great time.

I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.

*smile*

-----

Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.

BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.

Which I'm totally excited about. Now, if I could just get my hands on a copy!!

(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)

----- ----- ----- ----- ----- ----- -----

In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.

“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.

A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”

“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.

“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.

A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”

Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.

“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.

Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”

Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.

Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”

Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”

If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.

[pullout]
Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.

Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.

When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.

I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.

Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.

I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.

It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.

The first is that I love my sister.

The second is that I won't ever let her go.

Things have changed

2011-06-23T20:12:00.000-07:00

I havent fallen off the face of the blogging world!! I promise I havent! : ) I'm just pregnant and well that is basically like falling off the face of the planet when its number four!!

Tonight I have a post on my heart that Ive wanted to share for at least a week now but just havent taken the time to set myself up emotionally to write it all out.

Warning: I have a feeling this post could be hard for mommies to read who arent "here" yet but I still thought it important to write because most likely who will be "here" at least in some way.

Toby is five now. Five is big stuff. Five has also become the age where Toby is now struggling. Struggling with things I didnt think we'd struggle with for at least another few years. Toby is struggling with being different. There have been times that I think my heart would just break into two with some of the things he says. But at the same time I'm so thankful he says them. So thankful that he trusts us as his mommy and daddy to share what is going on in his little heart. He asks the question of why? the horrible awful makes my insides squirm, "why" question. He asks why we dont have a shunt. Why we dont have braces? Why does he have to have a back brace? He asks if we ever had braces when we were little. And he cries. Alot of the time he asks those questions he cries. It all started with the back brace we recently got for scolosis. It was almost like a lightbulb went off in his little head and he thought, "hey this stinks and this isnt normal!" Part of me wanted to play tough mommy with him. His orthotist told him it was like his thor outfit. I told him he looked tough. He cried. I wanted to keep telling him how cool it was, how smokin awesome it looked. but you know what? it wasnt cool. it didnt look smokin awesome. it stunk!!! so instead of my usual ploy of how amazing something really is. I sat down in our entry way with him that night and I held him and we cried. I dont know if I will ever forget it as long as I live. My heart broke because I knew he was hurting and I knew he didnt really understand. But we just sat there and cried. I dont think a few months back I would have ever thought it okay to let him see me cry like that. I would have hid myself in my room after giving him the "this is cool" lame talk. But things change and that night we just cried. Nate sat with us and we talked and we let him know it was okay to cry. It was okay to be sad. And you know, it really was okay. I cant even write this without crying now. I guess its still a little too fresh. or maybe im a little too pregnant : ) But its still okay.

Anyway, I tell this story to say that yea, we are struggling a little over here. I feel like the words we share with him now will help shape the way he sees himself, his disability and God. Its a hard thing to explain to a 5 year old that the God who loves them and only wants good for them would allow this to happen. It's hard, but I know that its true. I am clinging to that truth every time we talk. I pray that the truth will ring so true in my life and heart that Toby will see it as just that. TRUTH. I do believe that God made Toby exactly the way Toby was meant to be. I do not believe Toby was an accident, a product of medication or lack of medication. Toby is Toby and every part of him is the way he was meant to be.

In a totally different tone. We did discover a great book that is lighthearted but really perfect for this time in his life. The other day he was starting to get upset about his back brace again and Gracie ran and got this book to read outloud. I love that she had the thought all on her own.

It's called It's okay to be Different. (you can click the name and it will bring you to the amazon website to order)

I love this book. The first time I heard it Toby was repeating the words to his speech therapist.

"It's okay to have wheels."

"It's okay to need help sometimes"

"Its okay to eat macarroni and cheese in the bath tub"

I teared up at least through the first 4 readings.

Its just a fun, sweet, not too heavy book on differences. I think its been helpful. Its even been a good conversation starter on how soooo many of us our different.

Well, I hope this post finds you well. I hope you know that even though we go through rough spots, hard times and dark storms. They pass, They always do. Then we come out on the otherside of it stronger and better for it.

Kari

Decisions, decisions

2011-06-13T19:07:00.000-07:00

Summer has officially started, and we're officially in "countdown mode" with regard to Esther-Faith's kindergarten. Oh, we're not counting down the days until she goes to school, we're counting down the days until we have to make a final decision.

To make a long story short: Private school close to me with no services (PT, OT, Speech, adapted recreation, etc...) that is all day, every day and close enough that I could get to her every three hours to assist with cathing.

OR

Public school with services that only meets Monday, Wednesday, and every other Friday to which we would have to transport her but where she would have a nurse to help with cathing and then we have to find childcare for the other days of the week.

It is a HARD decision. And we can't seem to make up our minds. We've got our pros and cons for each. We've made our lists of "what-ifs." We've agonized over the whats and wherefores. And STILL, we can't decide.

I know, it's kindergarten. Except for our kids, it's more than just classes. The decisions go beyond what they'll learn to how they will learn it. Where will they have the least restrictive environment? Where will there be someone who knows the signs of shunt failure?

How do we decide?

If you've walked in these shoes, ANY advice you can give would be appreciated!

sailboat

2011-06-06T14:56:00.000-07:00

It has been a while since I have posted anything on here but I intend to get back into doing so more often. Because of the long absence I suppose I should reintroduce myself. :) This is Karen Orr, Carson's mommy (Carsonscorner09.blogspot.com) We have recently added our second son, Silas, to the family. Everything is going fantastic and we are more than blessed. Yesterday, I heard an amazing sunday school lesson and I want to share it with you.

First the story was told of a man who fashioned himself an incredible sailboat to journey across the ocean. It was very large and beautiful for the eyes to see. The sails were magnificent. It was greatly admired and people were very complimentary to its appearance and grandeur. When it became time for the man to begin his journey many marveled and envied at the boat as it made its way out to sea. It was just so pretty and so perfect, they thought. Soon into the man's journey he came into a storm, and his boat was quickly turned upside down. In this position the hull was visible, and it was very obvious at this point why his boat could not withstand the storm. Although the sails were beautiful,and the boat was large, the hull was tiny and very poorly constructed. The man neglected the hull... nobody would see the hull, and therefore he regarded it as unimportant. He caused his own boat's failure.

Now the moral of this story. We are the boat. Our sails are what people see of us. How they see us. How we dress, do our hair, our make-up. It could be our nice homes or our nice cars. The sails are our material things. The hull, is our soul, our heart, our inner selves that are not visible to the eye. Nobody sees our hull, they see our sails. So, all too often we decorate our sails, we worry about our sails, and we spend our time and money to gain more material things so that we might be complimented. Of course the storm referenced in the story is none other than the storms we face in our lives, the harder times. Because I am posting this on a blog entitled Spina Bifida Kids I can safely and assuredly say that we all know what it is like to face a storm in life. But friend, I ask you, how is your hull doing? Are you spending any time investing in what will sustain you through the storms. When I heard the words, "It is Spina Bifida, a birth defect that will affect your child." It did not matter what I was wearing. My house, and my car could not carry me through the trial. My faith did, my God gave me strength and peace and comfort. He still does. It is our responsibility to build our boats, and ours alone. Will yours make it through?

This was a blessing and encouragement to me, I hope that it is likewise to you.

Anxiety and cheer

2011-05-31T15:17:00.001-07:00

Worry weighs a person down;

an encouraging word cheers a person up.

Proverbs 12:25

Photo notes:
Sometimes, difficult moments turn into days.
And days into weeks.
And we start to feel the weight of the life we chose.
And then...
We find ourselves in the company of those who love us.
Very, very much.
And they understand.
Even when they don't.
And they listen. And reaffirm. And love.
Mostly, love.

That is where we found ourselves this weekend.
Difficult, heartbreaking decisions looming.
Disappointment weighing.
And the arms of our family encircling.

And it was amazing.

Catcher's Mitt 101

2011-05-17T19:49:00.001-07:00

First, make sure you have the right attitude.

Make sure you know how to use the glove.

Forget the glove, I got this.

Make sure you have a good partner.

Hands out, ready to catch.

Wait a minute. I don't need to see the ball coming at my face.

I can totally catch it anyway.

Dear Mommy....oh wait....

2011-05-10T15:30:00.000-07:00

So i was all ready for my blog post. Pumped up in the car from a long camping trip with little sleep. My poor husband had to hear all about this blog post on the drive home.
He feels the need to indulge me sometimes when I need to vent.

So I was going to title this post,

Dear Mommy of a child without special needs,

the post would then continue with something all these lines.

You and your child will survive potty training because your child is physically able to go potty. It will not be the end of your world if it takes a while, even a long while.

You and your child will survive when your child is getting some new teeth. All kids do.

You and your child will survive if your child gets a skinned knee.

But then I started thinking, MAN this post sort of reeks!! Reeks and drips of nasty old rotten bitterness and frustration, maybe even a little anger.

Sometimes facebook is a rough place for me. Sometimes its amazing. But sometimes its frustrating to see some of our kids go through such awfully hard things and see you mommys struggling through some really scary moments. And then see the status updates about potty training, or teething and oooooooh please pray for us this is so hard because baby so and so has a stuffy nose. I want to take some of your status updates about UTIs, ER visits, Surgeries, braces, and therapy and just post it on their walls.

But as I got ready to sit down and write this Dear mommy, bitterness post. (and after a nap) I really had to think about the truth behind what I wanted to write and why.

Is it frustrating when friends, family, and people we really dont even know that well complain about things that seem so trivial? ABSOLUTELY! But is it trivial to them. At that moment of potty training, at that moment of endless crying because of new teeth or hearing a baby having a hard time breathing seem like something small? Not to that mommy. Its big! And you know, if I wasnt where I am today. That could be me.

I could be the mommy on facebook with the biggest worry being a scratch instead of scoliosis. I could be the mommy worried about teething instead of tethered chord. I could be the mommy scared about silly things instead of shunts.

And instead of feeling bitter and frustrated maybe I should sit back and be happy for them. Maybe I should be happy for me too.

I can be content knowing that they dont have to deal with the worries and fears we do.
I can also be content knowing that their child is spared some of the things are children are not spared from.
But on the flip side. I know that my life with Toby has changed me. permantly. and in a good way. And on that same note though I dont want my life with Toby to change me to a bitter angry person at everyone who has a healthy child. Wow!! Talk about not being able to keep friendships! : ) Its something honestly, I give to God on a regular basis. Maybe I take it back since I have to keep on giving it over to him. But as long as I keep giving it to God as long as I keep fighting it and not just sit there and right mean ugly posts that might make me feel better at the moment....and then honestly, pretty junky afterward.

I hope these thoughts make sense to you, since sometimes I have a hard time putting my thoughts into a logical progression : )

Kari (aka toby's mommy)

Happy Mother’s Day (from a special needs perspective) - By Misty Boyd

2011-05-07T21:47:00.000-07:00

The following is reprinted with permission from the blog of Misty Boyd, "Broken Body/Whole Spirit."

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If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.

Mom,

Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!

Love,

Your SB kid

SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!

Just Stay Calm

2011-05-06T22:52:00.000-07:00

This morning I got to take Nate to PT. His dad usually takes him, but I had the day off and love to see all the cool things he's doing at PT. They are just starting to work on walking up stairs without holding on to the railing. He's not totally able or comfortable doing it yet, but with his PT's help, he got to the top of the 5 steps.

He's also working a lot on jumping--that's his favorite thing to practice. Today he jumped over 3 boards in a row. The next thing on their assessment form for him to master is to hop hop hop three times in a row without stopping, and right now he can hop twice. I know he'll get there soon (then again, who really cares if he can hop three times in a row--we're studying for the test on this one).

We talked about Nate's gait--it really is pretty "normal" but his foot lands flatter than it should. She is working with him on standing up by pushing on one knee, instead of the old hand-hand-foot-foot trick we've been doing for so long now. She again told me that he is functioning at about an S1 level, which makes me happy every time I hear it, since he was an L2.

Overall, I was very pleased and proud of Nate's progress. It was a good day.

Then it was time for him to ride the horse, and he worked hard there too. But as he got off the horse, his PT told me that Nate's pants were wet. The horse's blankets were wet too, and they had to make plans for washing them. I was embarrassed. Nate was not. The PT asked if we were cathing or potty training, and I told her that we planned to try potty training when Nate is ready, but he has no interest right now. He'll be 5 next month. We're following the urologist's advice to wait until he's interested. The PT said out loud what I was thinking, "Yeah, but what if he's 8 before he decides he wants to do it?" Yes, and what if the thing that makes him want to potty train is another child making fun of him? I know. I get it.

Then she said, "Well, now that he's bigger, he may need a heavier duty diaper." Gut punch. Special diapers for big kids. No, no, no. I cried on the way home. The old panic came back. All of the great progress I saw just a few minutes ago meant nothing, because I was going to have to buy my child special diapers for big kids.

I prayed for wisdom. I called my mom, but she was in a dentist appointment--how dare she not be there every second I need her! Then I called the urologist's office and asked to speak with a nurse. This is how my brain works when I need advice--Ask God, then my mom, then the medical professionals. :)

I told the nurse that this has been happening with increasing frequency. I will put a dry pullup on Nate, then a couple hours later, all of a sudden he leaks on his pants. It's happened twice in the past week, and several times in the past month. This didn't use to happen. While she was telling me that at least it was good that he was voiding, I remembered something and interrupted her. Last week Nate was telling me something hurt and was pointing to his bladder area. I took him to the doctor to see if he had his first UTI, but he did not. Also, we suspect that Nate is constipated (it's hard to tell with him). Could all of this be related?

Yes. It sounds like he's constipated, and it's putting pressure on his bladder. He's holding it all in too long and then when he does go, it's enough to flood his pull up. Do a good miralax clean out and see if this stops. She wants us to add a daily dose of miralax also, and I don't like miralax, but I also know that if he's chronically constipated, he won't be able to potty train even if/when he decides he wants to.

After I had a plan and a probable reason for the problem and could put the idea of adult diapers out of mind for the moment, I remembered all his progress I saw earlier today. And not just the physical accomplishments but also his attitude and character. He works so hard at PT. When they were working on walking up stairs on his own, he was unsteady and scared. But he tried it anyway, not quite knowing how to do it. When he got to the top of those five stairs, he said, "I'll do it better next time." And he did. He tried again and did it better the next time. That stuck with me all day.

How do I forget the important things? That God has a plan for Nate, and that plan is good. That God uses people's weaknesses to show his strength. And that the physical condition of our kids is not as important as their character.

I also have to remind myself that Nate is not sad that he is not potty trained. He is totally happy with not using the potty, lol. All this sadness is me feeling sorry for myself, not Nate. I like to think that I am just sad for my son, but the truth is that I am sad for myself, and I need to get over myself.

In the midst of my freakout, I see this verse on Facebook (probably by one of you): "The Lord himself will fight for you. Just stay calm." Exodus 14:14

Just stay calm, Colleen. You don't have to figure this out on your own. You can't see the future. But you have the creator of the universe, and the creator of your son, on your side, and he is all over this. Just stay calm. But you might want to see a professional if you keep talking to yourself like this.

Blessings

2011-05-01T11:43:00.000-07:00

I haven't posted in a while, but it has been on my heart for weeks to share these lyrics with my SB family. They touched me deeply, and I have a feeling that they will touch you as well.

As a Christian, I know these Truths in my head, but sometimes my heart takes a while to catch up. I find that music often helps me along.

This journey we are on with our children, it is a process. Almost a constant grieving. Some days I am a walking testimony of these lyrics, while other days I cling to them for dear life.

Wherever you are right now -- today -- I pray that these lyrics meet you there and fill your heart with a love and comfort only God can provide.

Have a blessed week everyone!
~Lisa (@ Heaven Sent)

"Blessings" by Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home,
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise

...And if you want to take a listen:
http://www.youtube.com/watch?v=SGniRk_GcLs

Egg Hunt

2011-04-26T13:04:00.000-07:00

On Saturday, Esther-Faith went to a special egg hunt put on by a local community service organization. There were beeping eggs for the eyesight impaired. There were eggs on benches for the children who couldn't reach the floor. And there were eggs EVERYWHERE for the kids to pick up. It was a decidedly slower egg hunt than others we've been to over the years, but Isaac connected with one of Esther-Faith's favorite preschool friends and helped him pick up eggs. And Isaiah did his best to convince Esther-Faith to pick up eggs.

Although, she was only interested in the pink ones.

Heaven's Very Special Child

2011-04-13T16:47:00.000-07:00

I don't know if this has already been posted in here or not? But I thought I'd share this poem... It's beautiful!!

-----------------------------------------------------------------------

Heaven's Very Special Child

A meeting was held quite far from Earth!

"It's time again for another birth.

Said the Angels to the LORD above,

This Special Child will need much love.

His progress may be very slow,

Accomplishments he may not show.

And he'll require extra care

From the folks he meets down there.

He may not run or laugh or play,

His thoughts may seem quite far away,

In many ways he won't adapt,

And he'll be known as handicapped.

So let's be careful where he's sent,

We want his life to be content.

Please LORD, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they're asked to play,

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD."

by Edna Massionilla

So this is life...

2011-04-05T11:57:00.000-07:00

Hi guys! I know it's been quite some time since I have posted in here!! I just haven't had any mojo! I wanted to share my latest blog entry with y'all...
------------------------------------------------------------------------------

-Hectic-

That seems to be the perfect word to describe life right now...

Everything just seems to be at a stand still lately. I can't help but feel myself getting jealous. I'm happy but jealous. It seems like every time I think we are getting somewhere, something else happens that pushes it back or stops it. I want my boys to have the best there is for life to offer for them. I don't know how to do that though when I can't give them myself completely...

I hurt for my child & for the things that he could be doing right now, that he should be doing. But because of sickness & other issues it all keeps coming to a halt. I want my little boy to be able to do more. I believe in him. I have to grown to expect these sudden halts in life so I sit and wait for the next one to slow us down.

It's funny because things that used to be important & mattered to me, no longer even impact me. And, what I thought would never effect me or take hold on me, does. Having a child with Special Needs changes everything... Stupid, petty things are no longer important. You get to a point where you find yourself just hoping for a little bit of peace in the world. You find yourself being connected with people that you would have never even approached before. You gain a new perspective on life. I have found that I fall in love with the children who have tough situations going on in their life, whether it's another Special Needs child or a completely different situation. It's almost like your heart becomes softened, almost even broken sometimes.

It opens up a whole new world. You are forever changed.

When tragedy strikes another family, like the loss of a baby or fear of a life-threatening sickness... Even though you don't understand completely what they are going through, you can't help but feel like you're being pulled closer, emotionally towards them. You don't understand what it's like to be in their exact shoes but you can understand the emotional aspect of things that they are going through. You sit there wishing that you could do more for them... Wishing that there was some way to make it all easier for them...

I have grown to loathe the statement- "Everything happens for a reason." I no longer believe that. And, honestly to hear someone say that to me regarding my son, makes me just want to scream. I can only imagine how someone who has lost a child would feel when they hear that... I don't understand things in life & I know that we're not supposed to but sometimes I just wish we knew why. Why God does what he does...

I believe that I was chosen to be a parent to a Special Needs child for a purpose. I know that because of my boys, I am a different person. I know that our 2 boys were given to us and because of them I want to make a difference in the world...

"God grant me the serenity to accept the things I cannot change. Courage to change the things I can. And wisdom to know the difference."

Rolling

2011-04-04T17:57:00.000-07:00

"Look mom, I can do a wheelie!"

We were in the men's department at Sears. Trying desperately to find some blue jeans and other clothing to fit the rapidly growing 14-year-old boy. We were having marginal luck. Isaac and Esther-Faith were bored. Really, really bored.

So, she learned to do a wheelie.

My heart sank to my stomach--or maybe it lurched into my throat. Either way, I instinctively reached for her chair to keep her from tipping. She wheeled away from me and tipped back again. Looking over her shoulder, laughing, her red curls tousled in the breeze. Her tippers caught her each time, and kept her from tipping all the way back.

She did it over and over and over again. To the delight of her brothers, her father, and a whole audience of shoppers and onlookers.

Tim loved it. Isaiah loved it. Isaac loved it.

I loved that she was learning something new--not so much that it was tricks and tips in her wheelchair.

That is how she rolls, though.

That is how she rolls.

So Blessed

2011-04-02T13:05:00.000-07:00

Some of you might not know that I am Program Coordinator at the Spina Bifida Association of Kentucky. I started there a year ago (one year and two days ago, to be exact!), and I couldn't ask for a more perfect job. It doesn't pay much, and I don't get any benefits, but the perks of the job are priceless. I'll give you an example.

One of the things I do is plan classes for families, and recently I had a Bowel Management Programs class, where a nurse explained how to help your child achieve healthy bowels and social continence with diet, enemas, surgery, etc. At that class, I met a woman named Becky and the woman and child she is hosting from Ukraine. The 6-year-old little girl, Mashiya, has Spina Bifida and is in Kentucky temporarily "to get her feet fixed" (not sure if she had a surgery or just casting). While she's in the States they want to get her all the resources they can. Becky took notes about the bowel management programs, and she said she would translate it all for Mashiya's mom later that day.

At the end of the class when the nurse asked for questions, Becky (who has no reason to be familiar with Spina Bifida and only recently met this child) asked if there were any management programs for the bladder as well, because Mashiya can't control her bladder. For a minute there was silence, as we were all realizing that this little girl is probably not seen by a urologist and she and her mom know nothing about cathing programs. There were several nurses in the room, and the general consensus was that although it might be possible for Mashiya to one day become socially continent with bowel management, cathing, and medication, that was beyond the scope of what they could do during the short time she's here. We don't know if the medications and supplies are even available there. That's when Becky said, "So ... this means she'll be in diapers the rest of her life." A nurse answered, "Yes."

I've been thinking about Mahiya ever since. This little girl is so pretty and appears to be smart and social. But will she be accepted in Ukraine as an adult who wears a diaper? We often worry about our children not being accepted, but we really take for granted how much people with disabilities are accepted in the US (I know not all of you are American, but that's the perspective I can speak to). It is not so in other parts of the world, where there is really no question about whether you will terminate a special needs pregnancy--it is standard, expected, and almost mandatory--and there are still countries that provide "comfort care" (as in, keep them comfortable until they die instead of treating) to children who somehow slipped through screening to be born with Spina Bifida. Where there are few people with disabilities, it's even more difficult to gain acceptance.

After the class, Becky asked me if I could help her find Mashiya a wheelchair. Shriners supplied her with crutches, but she would need a chair for distances. They were also looking for an adaptive trike for her because she was using one in therapy and absolutely loved it. When I got back to the office, I dug through our storage and found a small wheelchair. After talking with Mashiya's therapist at Shriners, I decided I need an expert to measure the chair to see if it would fit, so I took it up to the therapy center located in the same building as our office. I just so happened to get in touch with a therapist named Melinda, and after I told her who the chair was for, she pulled out a picture of Mashiya she had on her desk!!! It turns out Melinda has been on mission trips to Ukraine, and somehow she knew of Mashiya and was trying to help her come to the states for her foot procedure. She didn't know she was already here! Talk about a small world. Melinda told me about her experience in Ukraine, and that even Kiev is not at all accessible, and people with disabilities are generally not accepted or valued.

Well, the wheelchair was too small, and so was the chair that Melinda found at her therapy center, but Shriners eventually found Mashiya a chair. On Monday of this week, Becky called me and said Mashiya and her mom are going home next week, but they would still like to find her a bike to take home because she enjoys the one at therapy so much. SBAK just happened to have a bike just her size that another family had donated a few months ago! They were thrilled!

So, back to the perks of my job. Today I got to deliver a bike to a little girl who loves to ride and otherwise would never own a bike she was able to ride.

Becky and Mashiya's mom wanted to meet Nate, and as I was taking Mom (I don't know her name) over to meet him, she asked me, "Do you do this cathing?" It broke my heart and gave me hope at the same time that she's still thinking about this and following up on it. It makes me wonder if they all went back to Becky's house the night of the class and looked up information about cathing and asked to see a urologist to talk about their options. I don't know. I did tell her to stay in touch and I would help any way I could.

Mashiya and her mom go back home next weekend. They are taking home with them a wheelchair, crutches, a bike, some sparkly new shoes for Mashiya, and who knows what else. But I think they are also taking home information and hope they wouldn't have found otherwise.

But they've also left something with me. We get so caught up in what our kids can't do and how busy our therapy schedules are and how unfair it is that we have to see all these doctors and cath and whatever else, and we totally forget how incredibly blessed we are.

I cannot even express how grateful I am that Nate was born in the time and the place in which he was born. 50 years ago, or in another country--Nate's story would have been totally different. Fetal surgery still seems like it belongs in the time of robots and flying cars to me, but that was available to us. We have resources that many would kill for--Nate rides a horse and swims and rides a shiny red bike and goes to a school that accomodates him.

We are SO. BLESSED.

Clinic day

2011-03-21T20:04:00.000-07:00

It's been a couple of weeks... but a lot happened at clinic.

UROLOGY. We gave the urology nurse our summary. She said we're doing everything right (if she only knew!), and she quizzed Esther-Faith about cathing. Because our use of bladder washes has kept Esther-Faith off antibiotics for UTIs, she prescribed some more. Esther-Faith will be assessed for Ditropan. She'll have a renal ultrasound, VCUG, and urodynamics test in mid-April. Boom. Boom. Boom. One right after the other. It should be a fun day. And I TOTALLY see a trip to Build-a-Bear in our future.

ORTHOTICS. Esther-Faith is GROWING. Her KAFOs had to be "grown" by an inch. This will be the last growth for this set of KAFOs--then we'll need new ones. And I feel like we just got these ones. While we were there, Nick (SUPER orthotics guy--he totally needs a cape or something) took a look at some of the things that were concerning us. He adjusted, and tweaked, and bent, and twisted until he got it right. The appointment was long, but I tell you what, I like Nick MORE AND MORE every time we need something done for her orthotics.

WHEELED AMBULATION. Esther-Faith's wheelchair ALSO had to be "grown" at clinic. The footrest was moved down and the seat moved back. All while we were there at clinic!

BOWEL MANAGEMENT. We talked again about the cecostomy. Again, after last year, I seriously hesitate to VOLUNTEER my child for another surgery. And really, if we decided to do it, we might have our first all-out rebellion on our hands. We'll see.

NEURO-PSYCHOLOGY. The exam will be scheduled. Although, nearly every practitioner who met our daughter--from developmental pediatricians to clinic nurses to the social worker to other doctors--all agreed that the exam was really a formality. It is PRETTY CLEAR that our daughter struggles with attention, hyperactivity, impulse control, and staying in her own space. All things we adore about her. All things that could make kindergarten a little difficult next year.

OCCUPATIONAL THERAPY. Esther-Faith will start to work with an occupational therapist to help her get stronger in her "trunk" (Cassie: apparently Ab RipperX doesn't count!) so that she can continue to develop her cathing skills. She nearly has the routine down, but there are two things that she still struggles with. Getting her pants down and getting the catheter in. The catheter part will come with time, patience, and practice. The balance to get her pants down is where the OT will help. We hope. Cause I really can't even wrap my brain around TWO possible surgeries.

PHYSIATRY. I took my laptop with the video of Esther-Faith taking tiny, tiny steps by herself to show the physiatrist. I wanted her to know that not only did she learn to walk with crutches, but also she learned to walk WITHOUT them. We've been using borrowed crutches. The physiatrist prescribed Esther-Faith her own. It was a small victory, but a victory none-the-less.

SOCIAL WORK. We met our third social worker in five years. I liked her, but really, I'm going to try not to get attached. She asked us lots of questions about Esther-Faith, our family, etc... We talked about our family dynamics, the boys, etc... Coincidentally, Isaac had just been kicked off the bus that week, and Isaiah was getting into his own brand of trouble at his school, so the social worker had another social worker friend give us a call. These sorts of things always make us chuckle. By the time the call came, Isaac had earned his way back onto the bus and Isaiah was in all sorts of different kinds of trouble. The issues of that morning were nearly forgotten.

ORTHOPEDICS. Prior to clinic, Esther-Faith had some hip x-rays done. They show a little bit of something (the word escapes me now), but nothing serious--just something to monitor and follow. And she has tibial torsion. I don't know for sure what that means, but her left foot turns in when she walks and apparently the turn is in her tibia. In "typically developing" children, the condition almost always corrects itself. In Esther-Faith, (as with most things with her) we'll watch and wait. The doctor said it *could* mean surgery, but not for many years.

I'm sure I'm forgetting something.

Esther-Faith danced with Nick in the hallway.

She hid from Tim when he wanted her to come back to the room.

While we were talking to doctors, she introduced herself to the other patients IN THEIR ROOMS (see Neuro-Psychology note about personal space).

She charmed all the medical professionals--even when she was being sassy.

She answered her own questions.

She took off with one of the wheelchair guys' tools.

She asked me if she was being brave enough for a surprise.

She took the light from the developmental pediatrician and examined HER ears.

She acted like the sassy, little princess that she is.
Even when she wasn't getting her own way.
Which if I'm honest, is pretty much ALL of clinic.

WE AMAZE AGAIN!

2011-03-16T14:53:00.000-07:00

Well, things are always crazy arent they. Looks like we just lost SSI because of the shirt sales, something with transfering the money from paypal to pay for the order of shirts. But you know, God is providing and I believe we should be set up soon with the Medically Dependant Children Program. We might have lost a couple of hundred bucks a month, but you know looking at all of this. its worth it. and I'm really NOT going to miss dealing with SSI! Do keep us in your prayers as we are trying to transition seamlessly. and dont feel bad, it would have happened anyway when we got our tax refund. its just life. : )
And this is why it's worth it:

Looks like the Spina Bifida Shirts, hoodies, totebags and onesies have raised an amazing 1,000.00 USD!

Pretty amazing if you ask me!!

Congratulations to all of you. I think this is huge. Remember we've spread our message, we've supported our kids and we've given a nice chunk of change to the spina bifida association of central florida!!

I think thats pretty awesome.

And I love seeing Toby with his shirt on. Just today he asked me why he's got to wear leg braces, before I might have avoided the word spina bifida. I might have avoided that title with him, but now its just a word. a word that we are totally completely redefining. So yup, we might have some spina bifida over here at our house, but we are kicking it's butt. : )

love you all and congratulations again. If you hadnt spread the word it wouldnt have been this amazing!

Common Ground

2011-03-12T23:51:00.000-08:00

A few weeks ago, I finally took the time to write about "That Night"...the night we found out about Brooklyn's Spina Bifida. As with many of you, I was 18 weeks pregnant and totally shocked by the news. And like all of you, my world was changed forever.

I had been wanting to write about that night for a while, but it wasn't until I decided to audition for this show that I finally made the time. My challenge wasn't writing my story -- that was buried in my soul, just waiting for the moment I wanted to put it on paper -- the challenge was taking my story and trying to apply to motherhood in general. Finding the common thread between my story and every other mother's story.

At first, I put it off. I honestly didn't know how I was going to find that common thread without forcing the issue or creating some cheesy conclusion. But as I sat down and relived that night, the answer came easier than I thought it would...

Every mother hurts for their child, no matter what the trial. Yes, our children will have more trials than most, but as I know from my other two daughters, every trial is significant to a mother...whether it's a scraped knee or a casted foot. And that realization did more for my soul than I ever imagined.

So often we talk about how we want people to accept our children for who they are and to not focus on the differences. Shouldn't we do the same for others? It is so easy to fall into the pity trap and isolate ourselves from our friends who can't possibly understand what it is we go through on a daily basis. Because they don't understand. How could they?

But we can't focus on that. It is just too lonely.

Yes, we need to find support groups and web sites like these so that we can feel understood, but we also need to be intentional about maintaining those friendships and relationships that are different.

I'm not saying it won't be hard. I have several girlfriends -- and siblings! -- that have children the same age as Brooklyn. Watching them grow together and reach their milestones at different times will be challenging and probably heartbreaking at times. But I can't let that keep me from enjoying and maintaining those friendships for myself and, better yet, for Brooklyn. How awesome is it that she will have a built-in group of Christian friends and cousins that I know will love her unconditionally?

I also think it is okay -- and emotionally healthy -- for us to let those friends into our world once in a while. It is easy to put on our strongest faces and let out a convenient "fine" when they ask how things are going, but that doesn't help anyone. If they truly want to know, let 'em have it, and I think you'll be surprised at how they react.

Now, I'm not saying we should walk around with a sob story on our sleeve, but if we're having a "SB sucks day" and someone happens to ask, a true friend will listen. She might even cry. And that, my friends, is what friendship and support is all about.

I truly feel God put different people in our lives for a reason. And just as we are learning through our beautiful children, those differences are often the biggest blessings.

~Lisa (@ Heaven Sent)

Incentive

2011-02-28T21:21:00.001-08:00

It's amazing what a little incentive can do...

I have book called "365 smart after-school activities" that we try to use a couple of times a week for ideas and activities. Today, the activity we selected was aerobic dancing. The note on the page reads: Aerobic activity significantly increases the oxygen supply to the heart, lungs, and all other body parts.

As it turns out, increased oxygen supply is what we needed.

Well, that, and the promise of a puppy.

We put on some music. The kids danced while I cooked dinner. I joined in occasionally. We skipped the slow songs. Isaiah and Esther-Faith were grooving. He was doing what he could to keep her off his toes. She was doing what she could to stomp on his toes. At one point he had to run out of the room, and he left her standing in the middle of the room.

We do this--leave her standing. Especially when there is music on. She loves to dance. She can stand for a while in one spot if we help her set her feet. He was gone a little longer than she liked. She kept dancing. I knelt by the piano. Isaiah came back into the room and stood by me as she took tiny, tiny steps. An inch or less at a time. Kind of dragging her left foot. She covered in a couple of minutes what I do in one step. But those tiny steps. Those inches. Those victories.

No walker.

No crunches.

No anything.

Tiny, tiny steps in my direction. Until she reached me and fell into my arms.

I sobbed. Happy, wrenching sobs. Isaiah's eyes weren't dry. He ran upstairs to get Tim as she wiped the tears from my face and asked, "Why are you crying, Mama?" She brushed my hair back from my face and caught my tears on her small finger. "Because I'm so happy, Esther-Faith!" I answered. "Do you know what you just did?!"

"I walked without my crunches, Mama," she answered nonchalantly.

Tim and Isaiah came back into the room. I reset her where she started. She stood there, wiggled her booty a little, and took tiny, tiny steps again. Right to me.

I have dreamed of this day for years.

Years.

After many tears. Lots of jubilation. Burning the barley risotto. Forgetting napkins on the table. And a whole lot more celebration. We sat down to dinner.

After dinner, she did it again. She walked two more times without her crunches. This time, we had the camera out. And each time she reached me, she reminded Tim that he promised her a puppy once she walked without her crunches.

And he did. About three weeks ago when she walked from the kitchen to the table a few times with one crutch to help Isaiah set the table, Tim told her that if she learned to walk without crutches, he would get her a puppy.

She loves puppies.

We texted Kate. And Mimi. And about half-a-dozen others. Then, she called Kate--completely glossing over the walking part going straight to the puppy part. Later she talked to Mimi. Same story. A little bit about walking. A whole lot about a white puppy with black spots named "Pony."

After talking to Kate, Tim slipped out and picked up an ice cream cake that said, "Baby Steps! Congratulations, Esther-Faith!" We had ice cream cake.

And despite our best efforts to sleep, Tim and I sit here in awe of our little girl. What she did today was not supposed to happen. But we can't shake the feeling that she isn't done. That she will keep doing all the things that she wasn't supposed to do.

A little bit at a time.

Tiny, tiny steps.

Sometimes, inches at a time.

And sometimes, it doesn't hurt to have an incentive.

Take THAT Spina Bifida!

2011-02-28T09:26:00.000-08:00

This is my friend Beth, an adult (about my age) who has Spina Bifida. She uses a wheelchair full time. She volunteers for CASA, where she is an "advocate for the safety and well-being of children who have been removed from their homes due to parental abuse and neglect." She is also awesome at the sport of rowing, has won silver and gold medals and is working toward the paraolympics. She is very involved in her local YMCA as she trains for rowing and is helping to raise money for a kids camp there by public speaking in the community.

If you're interested in watching an adult who has SB live a full and active life, take a look at this:

And here she is, ROCK CLIMBING! She can climb 8 feet now, and she averages an extra foot every time she tries.

Doesn't look like such a bad life, does it?

2011-02-26T11:37:00.000-08:00

I was having a particularly challenging day yesterday. I fretted most of the day and had some pesty house guesses arrive to just make my pitty party even more exciting. You may know these guys yourself....they are....what if's and coulda, woulda and shoulda! These guys know me all to well and it seems when I am having a difficult "Spina Bifida" kinda day....they pull out all the stops and try to beat me down until all the light that I have been walking in is almost extinguished.

Sometimes I am able to quickly send them on there way and other times I give into their reasoning, which most of the time ends up with me eating a bowl or two or three of ice cream or anything else that I can get my hands on....yesterday...it was Girl Scout Cookies! They showed up at the right moment yesterday...

Last night as I was out on my run for work, the word HOPE kept flooding my mind. I analyzed each letter and found it be a most amazing word. The reality of Spina Bifida is sometimes things are not so wonderful per say. This is what I discovered. I am not sure if I was just overly tired last night or maybe this might make sense to someone else. So....forgive me if I am way out there today.

Here is what I call the dark side of Spina Bifida....
-Heartbreak (when things seem so hard and nothing appears to be going right)
-Ostrich Syndrome (hiding from what you know is happening because you don't think you can handle another diagnosis or appointment or bill or whatever it may be)
-Pacing (because you can't sleep)
-Enough (the point when you really believe that you can't do this!)

Now here is the flip side.....

Happiness......Optimism.....Patience.....Endurance

My point is this.... HOPE is like our personal life-jacket. It keeps you from drowning in the what if's, and coulda, woulda and shoulda's that can weigh so heavily upon us. It is ever present and ready to wrap itself around us. There is safety inside that vest and it takes courage to walk in its light. Maybe instead of eating all that ice cream, I could have found a better way to deal with my moment.Madilyn is still progressing from her spinal surgery. We just passed the 5 week mark and are in full swing with all of her therapies! She is progressing so well and has learned to swim again!

Best Wishes to each of you this week wherever you journey may take you....
Walking in HOPE....
Jill aka...Madilyn's MOM

Trusting through the Grey

2011-02-21T07:20:00.000-08:00

Well, the honeymoon is over. We are right smack dab in the thick of what is Spina Bifida. And, honestly, it is harder than I ever imagined.

I like to call it the land of "grey." Nothing is black and white in Spina Bifida world. There are no solid answers. There are no promises. But, of course, that means we have Hope.

I know this. I've known this since the day we found out about Brooklyn's condition. Her middle name is Hope, after all. But that was before I could see her little face. That was before I fell totally and completely in love with her. And that was before she was in front of me, crying, crying, crying and I had no answers, just possibilities...

a shunt malfunction?
the wrong pressure setting?
urological issues?
teething?
reflux?
gas?
growth spurt?

I could go on and on and on. And I have. My head is spinning, my heart is aching, and I am physically exhausted. I feel weak. I hate that. I hate that there are no answers. I hate that the only way we may have an answer is waiting. And I really hate that I am using the word "hate." It is such an ugly word, but right now, it is accurate.

Tomorrow, we might get answers; we might not. I am hoping and praying with all that I am that we get some answers. I can't nurse one more minute. I need sleep. But WAY more than any of that, I want my happy baby back.

These are my feelings. As ugly as they are, they are accurate. I want to be strong. I want to be "inspiring." But the pressure needs to be released...my heart needs to feel.

But this waiting, this "grey" I speak of, I know He will use them. THIS is the character building. THIS is what will strengthen me. THIS is what will give me the Hope, the endurance to do this every minute of Brooklyn's life.

THIS is what faith truly is. It is having the discipline to TRUST when it is the last thing you want to do.

So I cried out to Him. I told Him I trusted Him until I believed the words myself. Over and over and over.

I trust Him.

Do you?

"I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD."
Psalms 40:1-3 (NLT)

~Lisa (@ Heaven Sent)

2011-02-14T19:12:00.000-08:00

Shaken but still united.

Those are the words that come to my mind when I think over the last week.

Ive watched us Mommies, Daddies, Aunts and Uncles be slightly shaken.

We've heard all kinds of things recently.

Fetal Surgery, What if, Could Have, Improvement, No shunt, Shunt, Walking, Not walking, percentages, and on and on the list goes.

For those who went through the surgery with their babes. An amazing victory. A punch to the air and a big whoop. maybe some feelings of defensiveness for choosing the surgery.

For those who entered the study but didnt get chosen. Maybe a feeling of defeat. Questions and whys. Maybe some punching of faces instead of air.

For those who were advised against the program completely or chose not to look into it. Confusion, fear and a slew of what Ifs

We could beat ourselves up, We could fight each other, or we could wallow in self-pity and guilt.

But naaaaa. We might be shaken up a bit. We might wonder some. We might have those moments.

But We are still UNITED!

and honestly, no matter what side of the fence you are on. Or maybe you just plain straddle it. Being united is what clearly matters most.

Kari

ps dont forget to send in your pictures for a header for us!!

Madilyn's Recovery

2011-02-12T02:11:00.000-08:00

My emotions still get the best of me when I talk about the experiences that we have had with Madilyn over the past three weeks. I wanted to share a few photos....they tell her story better than I can right now.Her sweet smile before surgery with they help of some loopy medicine! Going into surgery to release her tethered cord....(She has done this 3 times before!)

48 hours after surgery....

5 days post-op... things were pretty rough...PT got her up for the first time... difficult day...she lost her ability to walk....

A few days after we had been in the Rehab Unit!

It was a good day.... she was being discharged!

Madilyn graduated from the CIRU after 7 days. We were told to expect a 21 day stay. It was amazing to see her work so hard. She has regained the feeling on the bottom of her left foot and that has helped with her balance issues. She has begun to have "tingles" in her right leg. We are hopeful she will feel parts of it again. We are already working with PT and OT at the out-patient rehab center. We have our home assignments to work on when we are not there. Everyday she gets stronger and stronger. Her return to school this week was not successful. She had to go back to the doctor yesterday....I about fell over when they said STREP and a bladder infection!

We are so grateful for all the prayers that were offered in her behalf. We believe she is where she is today because of those prayers. We wish each of you a wonderful week full of HOPE!

Until next week,
Jill aka....Madilyn's Mom

A Brag Moment for the Thomas Family!

2011-02-11T10:54:00.000-08:00

One of our very own families here on Spina Bifida Kids was featured in the New York Times this week in an article on the SB in-utero surgery! (which if you all haven't noticed by now, has been largely in the news all week!) (I hope they don't mind me passing this along!)

New York times interviewed Jared, Jessica, Chloe, and their toddler son, Tyson (L5-S2). I want to strongly encourage you to check out their interview! And if you get a chance, they have one AMAZINGLY detailed journey on Tyson's in-utero surgery, successful birth, and today's journey with him on their blogs. This family has done an incredible outreach to others having been diagnosed with SB babies as well.

You can read the interview here:
http://www.nytimes.com/2011/02/10/health/10fetal.html?_r=1&scp=1&sq=spina%20bifida&st=cse

Their Blogs:
http://www.jaredjessicachloethomas.blogspot.com/
http://tysonjared.blogspot.com/

Congrats Thomas Family on a huge success, for both Tyson and for advocating for all SB families everywhere :)

~Jodie
http://mcginleybabyjourney.blogspot.com/

Walker-Free Wednesday

2011-02-07T20:11:00.001-08:00

It started with "Walker-Free Wednesday." Then, "Crunch-Only Thursday." And, "Where's My Walker Friday."

Eventually, she had transitioned to using only her crutches. Sure, she walks slow. She needs to be reminded to line her feet up. She falls more. And she's not as confident. But she's getting there. I don't even take the walker into preschool or daycare anymore. I leave it in the truck in case the teachers want it, but she goes with just her forearm crutches these days.

It's a big deal.

Until it isn't.

Today, as I walked into the daycare classroom just before lunch to help her with her catheter, I noticed that she was a little weepy. The teacher explained that she had a rough morning. She seemed tired and unwilling to share. Which was drama. And then, coming back from the muscle room, she fell. She was turning in her crutches and she fell.

Yes, she was physically hurt.

But when I asked her where it hurt the most, she pointed to her chest. That spot where we put our hands when we pledge allegiance. The spot where she places her hand when she gasps at a particularly sparkly something-or-other.

Over her heart.

I felt the lump in my throat. Because I knew what was coming next.

"So, your feelings were hurt?"

"Yes," she replied. "My friends laughed at me."

I didn't say anything. I couldn't think of anything to say. As she whimpered at the memory of it, I fought the tears of the future of it. We went about the business of cathing.

"Esther-Faith," I started. "How do you feel when your friends laugh at you when you're being silly?"

"I feel silly," she replied.

"Do you think your friends thought you were being silly?"

"Maybe," she answered. "But I was hurt. And the laughing hurt my heart more."

We finished. Washed our hands. Had a nice long hug. And went back into the classroom. We weren't there a full minute before two more "friends" started badgering her about wearing a pull-up.

"Why do you still wear a pull-up, Esther-Faith," one of them questioned.

"Yeah. I don't have to wear a pull-up anymore," the other echoed.

She looked at me. Her eyes begging me to take her out of the classroom. I knelt down in front of her. She leaned her head on my shoulder, and I whispered. "What do you want to tell your friends?" She shrugged. I held her delicate face in my hands and forced her to make eye contact. "Esther-Faith," I said. "You can tell your friends that you will wear a pull-up until your body is ready to not need it anymore." She stared into my eyes. "And that's ok, sweet girl." She wrapped her arms around my neck, buried her face in my hair, and slowly sighed.

It does not get easier.

For all the things she does that make me proud, I am sad that I can't protect her from the things that hurt. Hurting and healing make us all stronger. But these hurts... these pains... the aches in my soul for the things that I would change for my daughter if I could...

She is AMAZING.

She wasn't "supposed" to walk at all. And she's on the brink of walking with just one crutch.

She is AMAZING.

She was "supposed" to be "significantly developmentally delayed." But she did almost a dozen pages of self-assigned homework this evening. And she's on the brink of reading.

She is AMAZING.

She wasn't "supposed" to be here at all. But she brings out the best in all of us. Her brothers. Her dad. Me. She is our glue.

She is amazing.

On "Walker-Free Wednesday" and ALL the other days.

She is amazing.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because

I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place,

when I was woven together in the depths of the earth.

Your eyes saw my unformed body;

all the days ordained for me were written in your book

before one of them came to be.

Psalm 139:12-16

Give Love

2011-02-05T12:02:00.000-08:00

(I'm posting this on every blog I have access to...because it's important...because I want to reach as many people as possible...and because I can. ;) So if this is your third time reading it -that just means you are one of my BEST FRIENDS! Thank you.)

Because it's February.

Because I just decorated my house in pink and red hearts.

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.

Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.

The "can't stop starring at you" kind of love.

The "I'm always there for you" kind of love.

The "I can't keep myself from smiling around you" kind of love.

The "I promise to make time to laugh with you" kind of love.

The "everything you say is so important to me" kind of love.

The " I couldn't be prouder of you in this moment" kind of love.

The love that lifts you up....

Squeezes you tight...

Makes even hard times feel alright..

The love that teaches you all that you need to know...

And gives you support you need to grow...

The undeniable you were made for me...

And together we make a family...

What's mine is yours...

I treasure each kiss...

And everyone deserves to feel like this...

Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

You can bring joy and love not only to those who hold your heart -

but to child who needs your help.

Give Love.

By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.

The kind of love so many of us are blessed to have.

The kind of love he deserves.

Give Love.

Shea's story is a remarkable one - and it is only just beginning. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing wecan do to help them bring Shea home as soon as possible is to GIVE.

Give what you have.

$5, $25, $50

It's not the size of the gift, but the size of the heart behind it.

GIVE LOVE.

It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.

(And in adoption language, "bits" = $9,000!)

They need our HELP!

As a friend so honestly reminded me " Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -

to bring him home - to give him Love.

So help share the love...with Shea. :)

Isn't that the most adorable Valentine ever?!

It's message is simple - it's purpose sincere.

Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of the Saving Shea blog) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

I can't think of a sweeter, kinder,

more beautiful way to Give Love.

Can you?

(visit www.savingshea.blogspot.com to read more about Shea's story as well as to view/print these Valentines.)

Take THAT, Spina Bifida!

2011-02-03T19:35:00.000-08:00

I can't even keep up with all these kiddos who are telling Spina Bifida to shove it this week! Here are just a few:

Lysette about Lyla:
"I kinda feel bad for saying this, but I sure didn't think Id be chasing my kid around and removing everything from her path!!! But I tell you what... put Lyla on a nice open floor and she's on the go! And terrorizing everything in her path! :) I couldnt be happier! Take that spina bifida!"

And Tawny about Joshua:
"At a week shy of 8 months old my son rolled over for the first time today.... all by himself! What a beautiful thing that we all take for granted...something so simple as witnessing a baby roll over. Take that Spina Bifida!"

Guess what--Gavin started walking this week!!!! Check out the video and Heather's inspiring blog post. (This may be a SB mom blog you aren't following yet!)
Ramblings of a Mother of 3

Guess who else is walking--Mia!!!!!! And she's talking too, which means she's simultaneously kicking Spina Bifida butt and apraxia butt! This kid is a super hero!
Video of Mia walkin and talkin

In case you missed it, our friends Nicole and Annabelle gave SB a double punch this week with this blog post. Baby girl is strutting in her walker, and Mama ain't playin around with SB ruling their life anymore! Pow!
You Won't Win!!!

And lastly, little Kingsley is proving to SB and everyone else that even surgery can't keep a little hero down. This kid is a rockstar.
Kingsley out of surgery

I'm liking this! It feels good to have all this butt kicking in one place, right? So here's the deal. I know there's no way I'm going to catch all these success stories--large and small--every week. If you have a "Take THAT, Spina Bifida" moment to share, send me a facebook message! (Not my friend? Add me! Colleen Payne--the one that has 80 mutual friends with you.) Also, I started out asking permission before posting these, and then I realized I would never get anything posted if I kept doing that. So I'm going to assume that if you are posting something on your blog or facebook or babycenter, it's because you want to share how awesome your kid is with the rest of the world, and you won't mind if I post it here. Right? If you do mind, let me know.

Here's to another week of beating the crap out of Spina Bifida! Let's do it!

Who wants to be a star

2011-02-02T13:02:00.000-08:00

So, We've gained some publicity over here at Spina Bifida Kids. We've rocked some worlds with our awesome shirts. We've shed some tears with our posts. We've punched some air with our fists when we read about a child doing amazing. And of course we've REDEFINED!!

So now, who wants to be the star of this show???!!

What am I talking about?

I'm talking about the header picture.

Of course we all love the star of the show right now. Jet! He's totally hot : )

But I'm thinking lets have some fun. Lets do some rotation. Submit your picture for the Spina Bifida Kids header and it might just end up right there for everyone to see!! Id like to pick the top 3 pictures and have them rotate.

It can be whatever means something to you. Shoes, braces, a smile, standing, sitting, rolling, You choose and let me know why.

I'm pretty sure this smokin hot guy could give you a run for your money!! : )

Kari

Dinner

2011-01-31T20:09:00.000-08:00

1 large butternut squash, cubed
2 medium onions, cubed
6 garlic cloves, smashed
2 tbsp vegetable oil
Unlimited CUTE

We made low-calorie butternut squash soup for dinner in an effort to help Daddy as he battles back from five broken bones in his foot and almost three months of recovery.

In order to "help," Esther-Faith had to get her braces on and get into the learning tower by herself.

I will admit, I was reduced to tears as I watched her don her braces, push the learning tower to the island, and climb into it.

All by herself.

I know that by now, nothing she does should surprise me, but I'm amazed by her every day.

Prepping the veggies for roasting.

She misses her real Nana something fierce.
So, she insisted that the Nana that
never leaves her side help with the
soup preparations.

When Things Don't Go As Planned

2011-01-30T10:00:00.000-08:00

It has been two weeks since I have been able to even make it to a computer. My usual post is always on Saturdays....but, our life has taken a different direction since Jan 20th.

If you all remember, our sweet little Madilyn headed into surgery on Jan 20th. She had to have another de-tethering or her spinal cord. This was number 4 for her. Things went really well during surgery. Her surgeon was able to remove almost half of the lipoma and completely free up her spinal cord which was attached to the dura. It took them over 6 hours to complete the entire procedure.

Having walked this road before, we were prepared for our normal. After 72 hours she should have wanted to move into a sitting position. This did not happen. Her pain was greater than we had ever seen before. The intense spasms never stopped. We all began to worry.

Madilyn's surgeon quickly got PT involved to see if they could get her moving. It was frightening because of her pain. Then once her feet hit the floor....we knew that something was wrong... Our worst nightmare was playing out before our eyes.

Sometimes....things don't always go as we plan. Our plan was to have surgery and leave a week later. Madilyn's body changed all of that. After 7 days, we had to be admitted to the rehab unit of Children's Hospital. I was scared. I had no idea this floor even exsited. It is a world all of its own. The goal was....to get Madilyn walking again.

So, after a good long cry in the shower by myself, that Momma strength kicked in and I was on board. We have quickly adapted to where we are and we are working like crazy with her therapists to have her walk out of here on Tuesday.

I could choose to get angry over our circumstances. I could choose to be negative. But, as I stated early this year....I am going to choose HOPE! It will be a while before things are 100% for Madilyn....but, we will reach for it and keep reaching for it.

The Director of the Rehab unit came to her room yesterday morning and looked at me and said..."You are the best Mom on this floor. You are full of hope and push Madilyn to get moving!" I was so touched.... I am determined to move forward. Yes, I do cry. Yes, I am scared. But, with the support of all of our family and friends we will overcome.

Best Wishes to each of you,
Jill....aka....Madilyn's Mom

Take THAT Spina Bifida!

2011-01-27T19:26:00.000-08:00

Hi, friends!
I've asked Kari if I can start contributing a regular blog entry titled "Take THAT Spina Bifida!" We say it on Facebook and on Babycenter and on our blogs and probably in person too. Every time one of our kids does something that a doctor said they'd never do--"Take THAT Spina Bifida!" Every time one of our kids works so hard for weeks or months or years to get to a certain milestone--"Take THAT Spina Bifida!" And every time one of us parents overcomes the trauma of the pregnancy, the NICU, the waiting, the hospital stays, the every day grief--"Take THAT Spina Bifida!" You will not win! We are redefining you!

For my debut I was going to take a video of Nate jumping on his trampoline, but Nate came home from school on "red" again today and his consequence was that we took away all his toys, including his trampoline, for the evening. He has gotten in big trouble every day this week except for Monday. Wanna know why he got in trouble yesterday? He kicked his babysitter and his sister. Obviously, he got in big trouble and we had to come up with an especially creative discipline for that one. But--don't share this outside of our community--praise the Lord he can kick! Take THAT Spina Bifida! :)

Colleen

Taking the scenic route

2011-01-26T14:56:00.000-08:00

You may know Cassie. You may be a regular follower of her blog. You may know her because for Spina Bifida Awareness month, she featured our kids.

She is an amazing person. I admire her for many reasons. We have a lot in common. We would be great "in real life" friends, if geography weren't so important. Her son, Caleb, is just months older than my Esther-Faith. And I think if they ever meet, Cassie and I may be in-laws some day.

She wrote the following on her blog "Beyond Measure" today.

As she says in her intro, it is long. But it is WORTH IT.

With her permission, I republish it here.

-----

I am warning all of you ahead of time that this is long. I'm asking you to avoid just "skimming" and glancing at the pictures. Take a few minutes to read. I think this will mean something to many of you.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada. A shout out to you gals in Canada! I love reading about all of these other kids that are living life with Spina Bifida. I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born. And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.

I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.

That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.

I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.

He required so much support. I just wanted him to be able to hold his head up.

That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.

His PT had to make him a special seat to go in his high chair so that he would have more support when eating.

It felt like we were constantly having to do things, adapt things, to help Caleb. Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.

And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on. For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.

I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.

I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk. I have even seen him run.

I've seen him get stronger and stronger. I have seen him use legs that he can't feel.

And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.

Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

You Will Never Walk Alone

2011-01-23T07:43:00.000-08:00

In my last post, I mentioned that we had Brooklyn baptized last month. Honestly, I feel like I dedicated her to God long before she was born, but this day was still very special for many reasons. For one, we had her baptized with her cousin Nolan, who is only a few weeks younger than her. Watching my husband and his brother stand side by side, their heads bowed in prayer and their arms tenderly holding their babes -- an image I'll never forget.

It was also special to have our church promise to help raise our daughter to know the Lord, to support her -- a church that has been praying for her before they even saw her face. This group of Christians LOVE our little Brooklyn so much -- some of them "claiming her as their own" because they have prayed so much for her.

We are so blessed to have such an awesome support system around us, and I couldn't be more thankful that my daughter will grow up with such faithful people loving and caring for her.

At the baptism, a family friend and her daughter sang the most amazing Point of Grace song in honor of Brooklyn and Nolan's day, and I wanted to share the lyrics with you. As you will see, the words are meaningful on so many levels -- for us as parents, for our little lambs.

I know I've spent a lot of time praying that my Brooklyn will learn to walk on her own two feet, but I am also so very grateful that God promises our children will never walk alone. Rest in that blessing, my friends!

~Lisa (@ Heaven Sent)

YOU WILL NEVER WALK ALONE
Along life's road
There will be sunshine and rain
Roses and thorns, laughter and pain
And 'cross the miles
You will face mountains so steep
Deserts so long and valleys so deep
Sometimes the Journey's gentle
Sometimes the cold winds blow
But I want you to remember
I want you to know

You will never walk alone
As long as you have faith
Jesus will be right beside you all the way
And you may feel you're far from home
But home is where He is
And He'll be there down every road
You will never walk alone

never, no never

The path will wind
And you will find wonders and fears
Labors of love and a few falling tears
Across the years
There will be some twists and turns
Mistakes to make and lessons to learn
Sometimes the journey's gentle
Sometimes the cold winds blow
But I want you to remember wherever you may go

Jesus knows your joy, Jesus knows your need
He will go the distance with you faithfully

(Words and Music by Lowell Alexander)

How do you Redefine!?

2011-01-18T19:16:00.000-08:00

Some of the comments from my previous post. Go add yours now!!: ) if you dont know what im talking about scroll down a little and read the post about It's that time again.

Colleen said...
I love the catch phrase. It is brilliant and perfect.
My word for Nate has always been HOPE. Recently, he has begun to jump. In the middle of the floor, without holding onto anything, and he gets air. Awesome.

January 17, 2011 6:00 PM

Nicole said...
I love how you added the word "defy" to the silhouette painting of Katelyn... that describes her to a "T". She has defied the odds by surviving in an orphanage... she continues to amaze us! For Courtney, I think the word "sunshine" describes her best. Funny, because that's actually what her Chinese name means. She is so full of light and life. She shines brightly (and rather loudly at times!). :)

January 18, 2011 11:23 AM

Sara said...
My word for Ethan is "love." I love Ethan more than I could ever truly express. Ethan loves everyone with a blinded heart, no matter the difference or the likeness of each person he meets.

January 18, 2011 8:20 PM

Holli (and Mark) said...
All of these are worthy descriptions for our children. The ones I most identify with for Alex is Hope and Faith! The diagnosis was initially devastating and we were given such a grim view of what his future might be like. We held onto hope and faith that God knew what He was doing when He gave us Alex and are sooooo extraordinarily blessed! Now whenever I worry about some aspect of his todays or tomorrows, I remind myself Alex IS our hope and faith!!!

January 19, 2011 5:29 AM

Cake-tastrophe

2011-01-17T18:31:00.000-08:00

It had all the makings of a busy weekend. Lots of appointments, plans, and things to do. Including two birthday parties for the new five year old in the house.

We left the boys' therapy appointments and made our first stop at the party store. Parking in one of the 15-minute spots, we swiftly made our way through the store in search of a game that roughly 12 children of varying ages and ability levels could play. We had no luck. So we headed to the store to pick up the first of two birthday cakes.

Before you judge, let me explain. Yes, I almost ALWAYS make the birthday cakes. And they almost always taste better than anything store-bought, but I BAKE. I haven't done an elaborate decorating job in years. My sister--who is fantastically creative and gifted with frosting--decorates. We're a team--a GOOD team. I bake. She decorates. BUT, Kristen was out of town this weekend. So, knowing I needed a couple of elaborately decorated tinkerbell cakes, and knowing my decorator was out of town, I turned to the professionals. It was actually Tim's decision. And he even called the bakery where my sister used to be a decorator.

That said, I saw the cake. It looked nice. I paid for the cake. The price was kind of low. I called Tim on the way to pick up the second cake. He sent me back to the first place. They made the wrong size. So they make a second cake--on the house.

At the second store (an ice cream store), we had place a special order. Because Esther-Faith cannot have chocolate, Tim ordered a cake with all vanilla in one half and chocolate and vanilla in the other half. And he ordered it to also be elaborately decorated with Tinkerbell. I walked in. She showed me the cake. Esther-Faith's name was spelled wrong. I asked for it to be fixed. I was treated poorly by the barely-older-than-my-son employees.

Me: "Is there any way you can fix her name."

Employee: "Ummmm. Well, I don't know."

Me: "It's kind of important that her name be spelled right on her birthday cake."

Employee: "Well, it's close."

Me: "Right. But I did not order and pay for a cake that had my daughter's name almost right."

Employee: "Well, ummmm, I'll see what I can do."

Me: "Her name is spelled, "E-S-T-H-E-R-hyphen-F-A-I-T-H. Do you need me to write it down for you."

Employee: "No. It's right here on the slip."

(And she showed me the slip. And there was her name. Spelled the right way.)

Me: (a little dumbfounded) "Okay. Thanks for fixing it."

Isaiah called the series of events a "cake-tastrophe."

After that cake was fixed, we headed home. Once home, we ate lunch, and planned out the rest of the day. Where we would go. What we still needed to buy. What chores needed to be completed before company showed up. Etc...

Then I started prepping the food. Lasagna for 30. Salad. Ice cream. We did chores and rearranged rooms. Eventually, we headed out. We had four stops to make. We had a plan, and even with five of us, it only took about an hour to get everything done, and then we headed back home.

Sunday dawned. I made cinnamon rolls for breakfast. We planned to go to church, but time got away from us and we settled into chores and finishing preparations for the parties. There were two. One for Esther-Faith's friends from preschool and daycare at 2 p.m. And one for our friends and other grown-ups who care deeply about our daughter at 5 p.m.

Around 1 p.m., Esther-Faith got sick. Not just sick, but sick like she did a month ago. Sick like she did a year ago. And we started calling everyone who had sent an RSVP to cancel the party. We were all upset. Esther-Faith was crushed. She was exhausted from being sick, but still wanted a party. By 2:30 or so, she seemed bounce back to her usual self. Bounding around the house. Eager to get her party on. Tim and I sent some tentative messages. To my mom. And Kate. And some close friends. That if they were feeling brave, we would still love to see them.

You know, there are times that I am just astounded by the support we have. People who show up and love us no matter how hard life gets. No matter how messy or challenging or tiring or scary or exhausting. They're here. Or wherever we are. To make us laugh. To help ease our nerves.

Today, Esther-Faith played with all of the "prizes" that we bought to give her friends who won the party games. We did cut into the ice cream cake. But there are still two white cakes with white frosting and elaborate Tinkerbell decorations. Uncut. Untouched. In the garage (which is below freezing). We've got loads of salad left. And thank goodness the 14-year-old eats enough for an army, because we'll probably only have leftover lasagna for a couple of days instead of weeks.

We're still on high alert. She threw a temper fit to end all temper fits today. Her appetite is still a little off. And she's not entirely acting like herself. But we had an MRI and a shunt series a month ago. I'm almost sure her shunt is ok. The rest of it? I'm not so sure. We've consulted Dr. Google about complications of Chiari Malformation and allergies and other worst-case scenarios. We've started a bladder wash. And we take her temperature just about every hour. We ask questions about her tummy and her head. She gets irritated by all of the concern.

But, we just don't know. She's not typically a sick child. For all of the complications of Spina Bifida, she has been a remarkably healthy child over the years. We'll watch. And wait. And trust our instincts. If action needs to be taken. We'll do whatever it takes.

So, Esther-Faith turning five years old wasn't the spectacular celebration we had envisioned. Cake issues. Cancelled parties. Illness. But, Esther-Faith still turned five. She is still our light and joy. She is still Isaac's best friend. And the center of Isaiah's whole world--his hope. Just as I didn't plan on her, no matter how bad my plans go for her, she is still perfect.

All this also comes from the Lord Almighty,

whose plan is wonderful,

whose wisdom is magnificent.

Isaiah 28:29

Waiting excitedly for Kate to come in the house.

Opening presents and playing with Mimi.

Karaoke with Jim.

Tinkerbell ice cream cake.
With her name spelled the right way.

Its that time again

2011-01-17T16:29:00.000-08:00

It's that time again!!!

Spreading the awareness!!!

I hope you've gotten your awareness products!!!

As I start the beginning stages of the shirt order I wanted to share with you where the "catch phrase" came from.
Redefining Spina Bifida has been seen on blogs, facebooks and maybe even overheard in conversations.
As we were trying to come up with shirt ideas, I was sitting talking to my husband about the message of these shirts. What was the point. What I wanted to say. What I felt we all wanted to say.
I pictured in my head a dictionary page with the words spina bifida and of course the usual definition. Then I pictured a big huge red X written over that definition and the words that you now find on the back of the shirts written out.

I am touched as I pop on facebook or check blogs and see people linking up or posting. Amazing!! I really believe that we can change the definition of Spina Bifida. Maybe not the ones in the medical books. Maybe they will always say cant, defect, disabled. But the definition that lives in people's minds.

Maybe those are the definitions we will change.

Can, Able, Beautiful, Hope, Faith

Maybe those are the ones that really count.

I believe our stories are important, I believe that blogging, facebook, shirts, tote bags and all those kind of things really are important. That this is all part of our life, our process, our amazing life and part of our responsibility to help change the way people view spina bifida.

So what would you change? What words would you use? What has your child done recently that has helped redefine spina bifida?

I'll get us started.. I look at Toby and I see STRENGTH. Toby is walking with arm crutches when we were told just a little over 1 1/2 years ago that he wouldnt be able to walk at all.
Thats how we are redefining spina bifida!!

Kari

ps if you have no idea what im talking about with the shirts, tote bags and stuff. pop on over to urbanupcycling.blogspot.com to find out!!! Remember you only have till February 1!!

Pre-OP.....done!

2011-01-15T07:07:00.000-08:00

It's really happening..... after a week of being snow and ice bound in Atlanta, we made it down to Children's on Thursday for Madilyn's Pre-OP appointment with Anesthesia. The nurses were actually glade to see us. Most of them spent several days at the hospital and were happy to see some new faces. Madilyn got the royal treatment! We were not rushed and it gave Madilyn a chance to just talk and ask questions. She also voiced her opinion about the mask they use to put her to sleep. SHE DOES NOT LIKE IT....it tastes horrible....and yes we have tried every flavor they have! After getting cleared for surgery we headed down to the lab for some blood work. Madilyn was well hydrated and only had to have one stick! (After 6 years, I have finally learned to make her drink, drink, drink before we go for blood work!) Not one tear was shed.

It's real now.... Madilyn will be headed to surgery on Thursday, Jan 20th. Her 4th de-tethering of her spinal cord. We are so hopeful that she might regain the feeling in her right foot.

Now it is time to double check the lists I have already made....the ones I have made during past hospital stays when I wished I had this and that. Sticking to my lists calms my nerves in some strange way. I can't really explain it....

Leaving my other children behind is so hard. Especially since I will miss Tyler's 14th birthday. We are going to celebrate it the day before surgery but it will be sad not to be with him...we have this crazy tradition that we sing the "Happy Birthday" song at the moment you were born and you have to listen to Mom tell you all about the day you were born....even what I did the day before. This time...it will have to be a phone call. These are the moments that make this so difficult on me as a Mother.

Even though we have been through this 3 times before....it is never easy. My emotions are already beginning to get the best of me. Just typing my post this morning has been hard. I know what is coming. Madilyn knows what is about to happen. Last night she told us she was not going! I reminded her that we were going to make a new "Build-A-Bear" on Monday....its shameful that I have resorted to bribery. Thank goodness that a new bear works...I am afraid of what it will take in a few years!

We made every effort to let Madilyn enjoy the snow this week! Maybe this wild Atlanta snowstorm was one of those tender mercies from above. We made some wonderful memories that we can talk about when things are hard.

Best Wishes to each and everyone one of you...wherever you are on this journey at this very moment in time!
Madilyn's Mom
aka....Jill

Guest Post

2011-01-10T05:20:00.000-08:00

Esther-Faith attends preschool at a VERY special school with exceptional teachers. In her classroom there are children with every range of disability you can imagine as well as a few peer models. She receives PT, OT, and when necessary, speech therapy right in the classroom. We chose the school because of the physical therapist. And we kept her there because of the teachers and the education she has received.

I love her preschool and will mourn the day she is no longer a student there.

Every morning when I drop Esther-Faith off at school, a little boy named Eamon greets us. "Hello, Esther-Faith!" he says. "Hello, Miss Karin!"

Their teacher shared a story with me about Esther-Faith and Eamon. During dress-up time, Eamon was dressing as a firefighter. Esther-Faith was ok with that idea, as long as his outfit included sparkles--so, she added some. Eamon didn't mind. And once "circle time" started, the teacher was having a hard time getting Esther-Faith and Eamon to pay attention. She said to Eamon, "During circle time, we need to have our eyes on the teacher." To which Eamon replied, "I only have eyes for Esther-Faith."

Eamon simply melts my heart every day.

We've become friends with Eamon's parents. They are what you might call "good people." The kind of people we want in our life even if our children weren't sharing diagnoses. Mike and Jenn are--in a word--wonderful.

Last night, Mike shared the following on his FB page. With his permission, I share it with you.

-----

My wife and I occasionally watch "16 & Pregnant" and "Teen Mom". While it's hard not to empathize with the teen parents, Jenn and I often look at each other and wonder what these kids would do if their baby were born with a birth defect or other serious health condition. Of course, none of the parents on the show have to deal with these issues. I find this very convenient.

Jenn and I were in our 30s when Eamon was born with Spina Bifida. Both of us are college graduates with good jobs. We both have supportive and loving parents. And you know what? Despite having all that going for us, it has definitely been everything we can handle both mentally and emotionally. At times, the stress has threatened to tear our marriage apart. All the while, we know Eamon's condition could be MUCH worse.

Love has seen us through, and has forced us into a level of teamwork most parents wouldn't understand. As I watch the shows, I honestly don't know how teen parents would handle it. That's probably for the best. When we received Eamon's diagnosis (before birth), there was a lot of "Why us?" The only answer that keeps me going is because God knows Jenn and I are strong enough to make sure Eamon grows up strong and smart, confident in what he can do in spite of the limitations that fate tried to put upon him.

No, it is not the life we would have chosen. But it's one I'll never be willing to trade.

-----

From Karin (at the HennHouse)

Dealing with Disappointment

2011-01-09T12:25:00.000-08:00

Hi all! I have been MIA for quite a few weeks now, and there are several reasons for that -- work, the holidays, family obligations, a baptism, a shunt...

Yes, Miss Brooklyn ended up with a shunt. I have been okay with it for the most part, but I have needed a little time to get to a good place about it. Not that I was ever in a bad place. I just wanted to be truly okay before I went writing.

Don't get me wrong, I want to be real with my feelings, but I also like to take some time to reflect and make sure that my words are glorifying God. Until I get to that place, I tend to be quiet.

I can't say I was mad about the shunt; I was just, well, disappointed.

I know a shunt is a good thing when it is needed. I know it saves lives. I know it is saving Brooklyn's life right now. But my husband and I were so programmed into trying to avoid the shunt, that I somehow thought we weren't going to need it.

That Brooklyn was going to be the exception.

So many were praying for that very thing, but obviously, that wasn't God's plan. And as every day goes by, I can see why.

Miss Brooklyn is a much happier baby these days. Of course, she looks better -- her head size has gone down and her veins are less prominent -- but she also seems more comfortable. She smiles all the time and sleeps great. She has strong head control and is interacting with toys. She is still my Brooklyn - she hates having her diaper changed and prefers her Mommy ALL.THE.TIME. -- but I can tell the shunt is supposed to be a part of her.

She needed it.

I can say that now.

Funny how something that looks and feels so unnatural is truly improving her quality of life. Medicine is an amazing gift, and as much as every ounce of my being felt like this "machine" had no place in my baby's head, I can see now how God has used medicine to provide healing.

Yes, I wanted Him to be the healer, but I will accept the alternative He offered us and better yet, I will be grateful for it.

My heart needed to catch up with my head, but I am finally at the point where I accept that this "machine" needs to be a part of Brooklyn just as much as her legs, her fingers, her heart. All work together to give my daughter the life He intended.

I was disappointed, and if I am being honest, I think I always will be. But I will continue to trust, to have faith, and to hope. And why wouldn't I? Every morning, I am greeted with the most beautiful little smile that constantly reminds me that everything is more than okay.

Everything is exactly how it should be.

~Lisa (@ Heaven Sent)

The Flyer

2011-01-06T09:55:00.000-08:00

INFORMATION

2011-01-04T18:56:00.000-08:00

Hello to all you amazing people out there.

Just wanted to let you know that Shirt Orders for redefining spina bifida will be the last 2 weeks of january. I will be reguarly updating on facebook via urbanupcycling and in my status if you want to keep a check to make sure you dont miss anything.

we will be posting a flyer soon to help you spread the word. email to friends, sb organizations and whoever you think might be interested.

remember this time around the extra money earned will go to the sb organization that raised the most awareness by purchasing the most shirts. so make sure you let your local chapter know!

Redefining

2011-01-03T16:28:00.000-08:00

Shopping at Target yesterday, an employee approached us as we approached the check out. At first, I wasn't sure what was going to happen. We often get stares. Sometimes comments. Sometimes, people walk big circles around us. I'll admit, we aren't your conventional family. But she reached her hand out and touched Esther-Faith's curls. Then she asked me, "What does she have?" Without hesitation I responded, "She was born with Spina Bifida."

She touched my arm and with excitement she said, "My daughter was, too!"

I could have hugged this woman.

We talked for about 20 minutes. Exchanged email addresses. I gave her this web site. Her daughter is 21. She has endured some 70 surgeries--more than half of them on her shunt. And she is an undergraduate at a university away from home. I was encouraged by her story, and relieved by the small world we live in. It was a great connection to make, and I hope to see Connie again and to meet her daughter.

On another note, we have finally celebrated Christmas with both sets of parents (everyone got one of these shirts from us for Christmas), and I can share these photos!

by Karin.
(from the HennHouse)

Watch the Project E.L.I. Documentary

2011-01-01T16:06:00.000-08:00

A few months ago, you may have had the opportunity to read up on this special documentary based in Arkansas about parents being prenatally diagnosed with spina bifida. And some of you took a step further by ordering one of our "Team Eli" tshirts for our fundraiser and one of our blog families in California requested copies of the documentary to distribute to her doctors in her state. Now, you can view the documentary online on YouTube! Please take a moment to watch this documentary (and grab a kleenex because you know these feelings first hand) about SB and the story of our late son, Eli.

Click here to view Documentary on You Tube:

Project E.L.I.: Every Life Inspires

If you would like to request copies of this DVD for your medical personnel in your state, please please please email me at jodie@teameli.com. It is absolutely free and the purpose of this DVD is for medical teams from everywhere to hand out to other families being diagnosed as we all were. This DVD was created to give them HOPE before a decision of termination is made.

Much love to my SB families in blogland. And Team Eli tshirts are still available if any of you missed out on the last order. Just shoot me an email-

Jodie
http://mcginleybabyjourney.blogspot.com/

A New Year.....renewed HOPE!

2011-01-01T04:06:00.000-08:00

Happy New Year! Just saying those words give me a feeling of renewed HOPE. It's a feeling that flows through me from my head to my toes. There seems to be something magical about starting New Year. I am not sure I even have to words in me to describe it. The only word that comes to mind is......HOPE!

Reflecting..... I find myself reflecting on the year and what we have experienced in the world of Spina Bifida with Madilyn. It was not the easiest year for her. Bowel surgery took a physical toll on her for about three months. But, she braved each obstacle with grace and strength. She developed an abundance of self confidence. She passed the swim test at the "Y" and she entered the first grade.

The year didn't end the way we planned. Madilyn has developed "Charcot Arthropathy" in her right foot. She has been a a cast for three months. Two of the broken bones in her foot have healed....the other two are being a little more difficult. This is very dangerous for Madilyn because she can not feel her right foot. It also frustrates Madilyn....because she is so tired of her cast. After spinal surgery on Jan 20th, Madilyn will have a bone scan and bone density test to determine the amount of damage her bones in her foot have taken. We are hoping she may regain some feeling in her foot once her spinal cord is de-tethered.....HOPE!

We as a family, choose to see HOPE....

It would be easy to get discouraged and maybe tomorrow I will have to go back and reread this post. I could cry right now thinking about insurance and new deductibles that will have to be met. I could cry that I could not get all the medical bills from last year paid off by the start of this year. I could cry because I don't have a crystal ball and I don't know how we will handle it all. I could....the list could go on and on......

On this first day of this NEW YEAR, I am going to just choose to HOPE! That is what this journey leads us to. We will all have moments of fear and doubt. But, when we feel like there is no more we can endure, we have each other....and that in its self is reason to have HOPE!

Best Wishes!
Jill

Another talent to share!!

2010-12-22T20:32:00.000-08:00

Let me introduce you to Jennifer!!

Jennifer has 2 little ones and still has time to make some beautiful things!!

Amazing TUTUs and HairClips and More!!

She's recently brought her talents to us online!! Yeah!!! And to help get her going and give us some fun she is offering a giveaway!!

ADORABLE LEG WARMERS!! I love love love these!! sooo sweet! Maybe your baby is past this age but go ahead and enter anyway, I dont know about you but I have about 4 friends I can think of right off the bat that are pregnant!! Baby shower gift!!
speaking of gifts, hop on over to her site and see her tutus, and hairclips. Love love love them! I think they'd make darling gifts for all those spring birthdays!

CLIC HERE TO SEE HER SITE!
Okay enough gushing! : )
how to enter.
same ol same ol way : )
a few different ways.
1. post a link to this giveaway on your facebook and then leave a comment about one of her products
2. post a link on your blog and leave a comment about one of her products.
3. Do both and ENTER TWICE!!

The winner is chosen completely randomly! actually, my 5 year old picks for me! SO keep on entering even if you havent won yet. It's Christmas!! Thanks again for supporting someone who is making beautiful handmade products!

Kari

2010-12-22T09:01:00.000-08:00

there will probably be horrible typos as i am on my phone writing this, but i had to make sure you all see it.

joanna has added to the joining the journey tab for new and expectant mommies. make sure you check out the beautiful letters. if you wrote one and its missing please email it to me again if you can.

these letters encouraged my heart even thougb im well past tbe prego and baby stage

From my family to yours...

2010-12-21T07:30:00.000-08:00

Merry Christmas & Happy Holidays!!!

For the better

2010-12-20T00:29:00.000-08:00

This is a repost from December 16 at the HennHouse. We've had a long week. It started with some severe problems with the teenager and ended with Esther-Faith's short stay in the hospital.

-----

Five years ago today, we received the diagnosis that would confound and change our lives. For the better.

But I did not have time to contemplate how far I've come from the fear and shock of that day, because we found ourselves back at the hospital--just 11 months to the day after the illness that would rock my world and kick start 2010. And five years to the day from when her Spina Bifida and hydrocephalus were diagnosed.

As it turns out, Esther-Faith's ventricles look good. Her shunt does not seem to be malfunctioning or failing. She is simply sick.

What joy I had to discover that she had a typical illness.

What ache I felt knowing that today could have gone so differently.

What blessing I felt to have my family and friends and even other SB moms and their families lifting my daughter in prayer and thinking about us throughout the day.

What pain I had remembering the day we found out that days like today would be our life.

What happiness I had walking into Esther-Faith's hospital room to see her eyes light at the sight of me.

What joy I find in the relationship my kids have with each other.

How hot the tears that came quickly and easily--and stayed all day--today.

What frustration with my own emotions.

What comfort in sitting around with each other reading the same books over and over again.

What tenacity in being able to make any room our living room.

What peace in the snow that falls on our cheeks even as we make our way to the emergency room.

What comfort in sharing our fear and knowing that you all stand with us and hold us in your hearts.

What surprise in discovering how strong we really are.

What bravery in a tiny, red-headed package.

What spirit in her cries.

What maturity in the way she talks to the doctors.

What simplicity in her hug.

What pain to walk away from the hospital where she is sleeping.

What delight it will be tomorrow when I see her again.

I am so blessed to have been given Esther-Faith. For whatever time and whatever reason, I am happy that she is my daughter. Do I wish away the Spina Bifida? Only if it will make her life easier. But I wouldn't change a thing about her. She is exactly who she is--and I love everything about her. Even the Spina Bifida and all of its complications. Even the ADHD and all of its extra energy. Even the fear and all of its side effects. Even the sassiness and all of its challenges.

What happened today changed my life.

What happened 11 months ago today changed my life.

What happened five years ago today changed my life.

All of it--for the better.

by Karin.
from the HennHouse.

Surgery for Bear

2010-12-19T05:02:00.001-08:00

The other day I couldn't find Madilyn. I knew she was in the house but she was too quiet. As I searched the house, I heard her in the playroom. I was curious as to what she was doing so I did not disturb her at first. She had rearranged her playroom. In the middle of the floor was an operating table complete with sheets covering it. Then her favorite bear was lying on his stomach. Her doctors kit was lying beside the table.

Very calmly she was telling her bear that he would be ok. "I will take good care of you" said Madilyn (bear was having spinal surgery.......and Madilyn was Dr. Fields).

I stood and watched her for several minutes before she realized I was there. I had tears running down my face when she looked at me. I asked how her bear was and she replied...."he is going to be fine!".

We then shared a hug....a long hug....and she turned and went back to what she was doing and I headed back to the kitchen. My heart was heavy at first because I knew that she was thinking about her upcoming surgery and then it was lightened because she found a way to process it all.

I am blessed because I am Madilyn's Mom.

I hope that each of you have a Merry Christmas! May the blessing of peace and love fill your homes during this most magical time of the year. Since next Saturday is Christmas, I will not post again until January 1st.

Best Wishes!
Jill

Confession

2010-12-18T09:49:00.000-08:00

So, I have a confession to make.
okay actually 2.

1. i named this post "confession" to get your attention in hopes you will read on. (horrible arent I?)

the real confession

2. I'm a skimmer. I skim super duper long posts. not always, but a lot of the time. if something is wordy, I skim. get the basic idea and move on. I skim when I read books, emails, facebook, blogs. I skim. so now that Ive confessed to that...here's the post.

I clicked on a blogged the other day because it had a picture of Shea and whoooo hoooo was it a long one. wordy and the whole nine yards. I got into skim mode, but as I started skimming I thought, wait a minute...this is good stuff. and started back up at the top and read word for word.
it was worth it. It made me laugh, made me cry, made me smile and made me feel every single word written. so if you are a skimmer like me, and you might even be skimming this right now. STOP!!!!!
click and pop over to theriddingfamily blog. and read her post about our commmunity. I loved it.

kari

Friendships can be hard

2010-12-16T07:17:00.000-08:00

Ive been missing in action!! I'm sorry!! Its that time of year where everything is busy busy busy. You all have kept me incredibly busy! And I am very thankful!!

So here is a quick post before I run out the door with 3 little ones to therapy.

This one is about friends. (our friends not our kiddos friends)

Friends can be tough situations sometimes. Sometimes things can be said and done, misunderstandings can happen. As mom's sometimes it can feel like a lonely life when it becomes aparrent that our lives are so different from our friends. It can feel like there is no middle ground. A playdate that is fun for others can turn into an incredibly sad day for us if we watch our child get left out, fall or just plain not be able to keep up. And yet no body knows. which then the loneliness comes into the scene.

When I have those days. Days when I feel like no one understands all I want to do is retreat. I want to break off friendships that are deep and meaningful. I want to go to surface relationships that I dont have to work on. I dont want to talk about how hard it is and I dont want anyone ti know how hard it is sometimes.

But really thats not the answer. Yes it can be hard. Yes there will be times of lonliness. But the worst thing we can do is to retreat. To hide. To sit under the rock of spina bifida and make that our excuse to not have relationships. Because really, if we start to do that what are our children going to do?

I have beautiful, amazing friends. Friends who want to understand, who want to be apart of my life and my children's lives. When I have those urges to retreat, to go run and hide I just have to plain stop myself. I have to get that backbone and say, "no way, no how." My friends are worth fighting through hurt feelings, hard moments and such feelings.

So anyways, I say all this to say. Keep on pressing, keep on being honest, keep on fighting for those relationships. They really are worth it in the end!!

Kari

2010-12-11T04:29:00.001-08:00

Our Home away from Home!

Over the past 4 years, Children's at Scottish Rite has been "Our Home Away From Home" with Madilyn. Once I realized that we would spend more time here than we would like, my thoughts turned to home. At home we feel comfortable. We know our neighbors, the mail carrier, the UPS guy and so on. We know where to go for food and were the TV is. My thought was....then why can't we make Madilyn's experience at Children's as close to home as can be.

We visited the library, the garden's, the Koy Pond, the put put golf holes. We know which elevators get us to where we want to go. We have nurses we have known for 4 years and we love them. Radiology is a breeze since we know the procedures by heart now. We know when to go to the cafeteria and when not to. The play room is a must and the arts and craft lady will keep Madilyn busy if you let her do what she does best!

The other things we bring from home. A good pillow is a must. The hospital pillows make Madilyn sweat soo bad. She loves a pillow from home with a soft and cozy pillow case. Her blanket comes along as well as an animal or two. These things make Madilyn comfortable and give her courage.

This week as Madilyn had another MRI that required sedation. She did so well. I really made sure she was well hydrated the day before so we could get the IV in the first time. It worked and not one tear was shed.

We have suspected for some time now that something was not right inside of there. Suspecting and knowing are two different emotions all together. We went from suspecting to knowing this week. Sometimes...I hate being right because I usually know what road we are about to go down....and so does Madilyn!

I think this picture speaks louder than words.

Another lipoma showed up on her MRI. It has only been 15 months since our last de-tethering. But, her symptoms are great enough to go ahead and see if the progression of nerve damage to her right leg can be halted. Madilyn has broken her foot in 4 different places. She can't feel it and we would have never known it was broken except for the swelling in her foot. Before she has broken just one bone at a time. Now she did 4 bones. This is alarming to us. After her last surgery she woke up screaming because she felt her foot for the first time in a long time and it was broken. This time could be worse for her if she begins to feel it.

The more damage to the nerves in her right leg, the more her bone softens the easier it is for her to break it without knowing. This is her third cycle of this and we finally put it all together. This is such a huge decision to put Madilyn through another surgery so soon. March, April and May were spent in and out of the hospital due to complications from her MACE Procedure. But, even with that, after she finally recovered, the surgery changed her life forever and we love the MACE.

Madilyn will have surgery on January 14th. Until then we will work with Orthopedics in trying to get her foot healed. She also got strep this week. Ugh.....

As I sat talking to her doctors this week, I once again felt an overwhelming since of gratitude for these people who have such an active role in our life with Madilyn. I love their honesty in evaluating her situation. I love that we can speak frank with each other. I love that they know I have done my homework before I have gotten to their office and they are willing to listen to me. Most important ...they have bonded with our daughter and she with them. They respect that she is older now and they talk to her and not at her. Our next appoinmtments will be December 28th. Until then.... we will work on enjoying this beautiful Christmas Season.

A Labor of Love

2010-12-08T18:14:00.000-08:00

Hi everyone. I enjoy reading this blog so much, that I realized I seldom write for it. ;) I treasure it's existence -the inspiring posts from each of the talented authors. The way it brings everyone together through common love and shared experience.

The heart of it's goals: Educate. Ecourage. Relieve. Reflect.

It's a wonderful outlet. A welcome oasis from the everyday life where we are the minority.

A beautiful community of people looking to help each other.

We come here to share stories - and we leave stronger than we came.

And I'm writing here tonight for strength.

Because 2 are stronger than 1.

And 103 working together as 1 has to be incredible.

Did you know we have 103 followers?

Wow. That's amazing!

103 at followers not counting those who just follow anonomously.

So here I am - asking for your 103 hearts to open up for moment - even wider than the already are :) - and meet someone very special.

Shea.

Many of you have already met little Shea. You have melted over his big brown eyes and shy smile. And then your heart has broken over his story.

The story of an orphan.

4 years old.

Born with Spina Bifida.

In need of a family.

And nothing can bring him home easier than making a donation. The extreme expense of adoption is what discourages and prohibits so many from adopting.

And nothing can help him find his family quicker than spreading the word. Knowledge is power. A week ago none of us knew who Shea was - now almost 100 people "like" Saving Shea on faceboook. That's progress.

So please. Share Shea with your family and friends.

Post it on your blogs. Link to it on your facebook profile.

Email. Text. Talk. Pray.

Never forget to pray.

Pray that somewhere out there - a waiting family will see their future little boy in Shea's face.

Pray that hearts will be opened in generosity and that everyone will give something. Don't underestimate the value of $5 - because every little bit helps.

And we need every - little - bit to help Shea.

If everyone on this blog gave 5 dollars that would be over 500 dollars right there!

Kari has designed Saving Shea bracelets - and for each bracelet sold Shea's account gets $5!

So I'm asking you tonight - to do what you can to help Shea.

Together - we can save a little boy who shares a common bond with our children - but lacks the family to support, love and fight for him.

So let us fight for him.

Neighbors

2010-12-06T18:07:00.000-08:00

(Note: all links will open a new page.)

There have been so many times on this journey that I've wished I was an actual neighbor to one of you. Not a virtual neighbor--supporting through comments, prayers, and worry. But an ACTUAL neighbor. So I could bring you some chicken soup or a pie. So I could sit with your other kids while you tended to the one who needs critical care. So I could hold and spoil and sing to your adorable babies. So I could attend the fundraiser for Shea. Or share a cup of hot chocolate. Or just laugh and cry and hug.

I am so grateful for all of you.

I'm not sure I could have made it through some of the stuff we've been through this year without you. If you weren't on the other end of a computer screen sharing my fear and my tears. If you weren't sending me emails and leaving comments and just praying.

What comfort I had in knowing that you were there... understanding that it isn't just hair when you don't have a choice. Understanding that letting go is sometimes the hardest thing to do. Understanding that sometimes loving your child doesn't protect them from what is necessary for their survival. Knowing that some of you have been there-done that. And seeing that you are alright. Knowing that some of you read here for help and hope and inspiration. And seeing that what I say can make a difference--that you will be alright.

I don't know my actual neighbors very well. A couple of them--sure. But we live in a fairly transient neighborhood. We've been here 10 years. We've been here the longest.

But friends, let me tell you, my virtual neighbors are so vital to my life. Knowing that even though I can't actually feed you (because it is what I do), I can virtually feed you (which I'm getting better at). I am so glad to be your neighbor. So glad to call you friend. So glad to be wandering this Spina Bifida pathway with you.

Thanksgiving was tough for us. My dad--who left his home on Easter and hasn't been back yet--couldn't be with us. And my Tim with his broken foot. It was stressful. I didn't have a spare moment to think about what I am most thankful for. I was going through the motions.

But today, as I read about Shea. And as I looked at Cassie's SB party photos. As I made some new friends on facebook. Reading a piece by a mom who has SB, trying to determine if she is having a shunt malfunction. Reading about some of your own pain. And saying a prayer for you. Celebrating that Kingsley will be home for Christmas! Doing an actual dance in my kitchen when I read that Carson is going to be a big brother! And hundreds more... (check out the sidebar to read some AMAZING stories)

So, as I'm finding my way back from this year, thank you. For being my neighbors. And my friends.

Esther-Faith endures some allergy testing.
I had to keep her still.
While she screamed. And screamed.

Helping Esther-Faith add a leaf to the Jesse Tree.

Esther-Faith and my niece, Aurora, at Auri's birthday party.
I had a moment when Esther-Faith asked to wear this dress.
She hadn't worn it since her party in January.
Just days before she was hospitalized.

Watching "Elf"

2010-12-05T05:48:00.000-08:00

"Believe as a child believes...and the magic will find you!"
The face says it all.....

It has been a busy week at the Fields house. We have been busy decorating and finishing our preparations for a wonderful holiday season. A week ago I shared my thoughts about fretting over things I can not control....like the fact that Spina Bifida does not take a holiday.....EVER! But, as you can see from the picture above....Madilyn usually takes it all in stride.

This week is full of important appointments. We will be off to appointments that can not wait till after the holidays.....even if Madilyn would have it be otherwise.

Monday she will be having her 14th MRI and it will be the 21st time that she has been put asleep. Those numbers can be overwhelming to say out loud. But, this is just apart of Madilyn's journey. This MRI will be extensive. If we don't get out of Radiology in time....we will come back to Children's on Wednesday to see our Neurosurgeon. Thursday brings us to an appointment with our Orthopedic Surgeon and to see if he has come up with a plan for a broken foot that is not healing. As much as I would like to say that her foot is looking better...it is not.

Our goal is to keep the Christmas Spirit alive even if things are a little challenging right now. I am grateful for the blessings that fill our home. I am grateful for the opportunity to be Madilyn's Mom.

I will post an update next week. It is our wish that each of you have a wonderful Holiday Season!

Trying again

2010-12-04T00:06:00.000-08:00

Something that has been a great burden on my heart lately is each of you mothers that has had a child with spina bifida and may be thinking about trying for another child. This post is for you.

After Carson was born several people had made mention to me in regards to the fact that Carson would be my only child. Their lack of knowledge and understanding somehow led them to believe.
1- I couldn't have more children
2- I wouldn't be wanting more children.

Well, they were very wrong in their thinking. I definitely wanted more children, and as we all know having a child with spina bifida in no way affects your ability to have more children.

It does make things a little scarier and it does change your perspective of having a child.

After having Carson I decided not to return to birth control.... I am not opposed to it I just personally could not. So we decided that we would like to wait about 2 years before the next baby and we were going to be careful. :) LOL I found out I was expecting again when Carson was just nine months old.

OOPS...

Well I was regularly taking a prenantal vitamin and extra OTC folic acid. I was terrified to see my OB since he had very sternly instructed me to wait 2-5 years before trying again. When I did see him, I was shocked to find him super excited. I was scared for all the instructions I anticipated I would receive, but rather I left bewildered as everything was routine from my first pregnancy. He did give me a new prenatal Neevo ( which has something to help your body absorb folic acid) and a prescription folic acid. Then it was see you in 4 weeks.

I thought .... but the neural tube will be closed by then, and ..... what no extra precautions, instructions, testing... just see you in four weeks. Puzzled, and frightened I asked if I could return back in two weeks just for an update. He chuckled and said that would be fine.

I knew the days that would involve closure of the neural tube and I was scared beyond words... One of those days I forgot to take my prescriptions.... I cried because I just knew that now something would be wrong. I prayed because I knew the Lord was ultimately in control.

I went back for my next checkup and my OB obliged and took a look at the nothing that had changed sinced my last visit.

He then scheduled me for routine checkup in four weeks. I asked him about the perinatologist because I figured I would visit him often and be watched closely. No, We will set you up around 18 weeks.

Pregnancy has been pretty much just like Carson's. I've been sick, I've been tired, I've been scatterbrained, and I've been cranky.

On Wednesday, We saw the perinatologist. I was scared/excited. I could tell that my peri. felt the same way. He began the ultrasound and within a minute told us there were no defects involving the spine... definitely no spina bifida. Then he spent what seemed like 5 minutes looking over the heart/ tummy area. He was quiet and he let out a soft moan at least once. All I could do was pray and stare at the screen. Then he finally moved to the feet and said, "I am happy to tell you this baby is completely fine, and has no known defects."

At this news for some reason my heart stopped... very similiar to how I felt when I heard that Carson had his defect. It was surreal and it was amazing at the same time. After having a child with spina bifida I am carrying a child with no defects.

I have said all this ladies to encourage you... I know that if the choice had been left to me I may never had taken this leap of faith... rather postponed or excused myself into waiting just a little longer for our next child. But then, you know what, it would not have been God's perfect plan, and then we wouldn't be having this next baby __________ ( announcement of gender will be posted on our blog tomorrow 5pm PST)

Ladies, please know that you are not alone in your fears, nor are you less because of them. I want to encourage you, and I hope that is what I have done.

Crunches

2010-11-29T14:26:00.000-08:00

Sometimes, we can all use a little help...

And as it turns out, any crunches will do...

I'm still trying to catch up with housework, appointments, cooking, Christmas preparations, etc... as one of the grownups at the HennHouse is down for the count. Two weeks ago Tim broke four metatarsals (one of them shattered) and his big toe during a soccer game. Last week, he had surgery. The surgery was supposed to last 45 minutes. It lasted two hours and 15 minutes instead. He has a job that requires driving. Per doctor's orders, he isn't to drive for six weeks. Unfortunately he has already exhausted his sick leave due to Esther-Faith's hospitalization (and recovery) earlier this year.

It might be a light Christmas at the HennHouse.

BUT....

As Esther-Faith watches her daddy use his crunches, she is much more willing to try her crunches. She watches him get up, and she tries it. She watches him navigate small spaces, and she is more confident in her ability to get where she needs to go.

In fact, when he first got his crunches, she insisted on showing him how to use them.

It's adorable.

And magnificent.

And hopeful.

Even if having Tim down for the count is stressful, it may be worth it if she gains the confidence she needs to continue developing her crunch skills.

by Karin.

(from the HennHouse)

Finding Gratitude

2010-11-27T14:39:00.000-08:00

Time seems to slip through my hands sometimes. I missed my post last Saturday and couldn't figure out where the day went. I do that sometimes....especially when I am feeling stressed. When I am in this mode, its all about survival in a way. Sometimes it is just making it from sun up to sun down.

When I realized that days were getting by me, I had to stop myself. I literally had to say out loud....STOP....BREATH....and RE-EVALUATE. Kinda like the stop, drop and roll saying we all learned in Kindergarten from the fire man who came to teach us about fire safety. I have learned this week that there is power in those words.

Spina Bifida does not take a Holiday. I hope that my thoughts do not come across as "complaining" in any way as I attempt to express my feelings.

On Thanksgiving morning, I was still at work. I was on my run and was scheduled to arrive home at around 7:30 am. My husband was going to put the Turkey in the oven for me around 7:00 am. I had spent two days prior preparing as much as I could because I knew that I would be really tired on Thanksgiving Day. My mind was filled with all kinds of thoughts as I was driving. I was thinking of the baby I had lost on Thanksgiving morning several years ago. I was thinking about Madilyn. I was hoping she was sleeping peacefully. When I left for work around 11:00 pm the night before she was not feeling well. I was thinking about her broken foot and the conversation I had to have with her Neurosurgeon. I was reviewing her upcoming appointments for her MRI on Dec 6th and her next appointment with our Orthopedic Surgeon on Dec 9th. Then I was troubled that she would miss all the fun stuff at school in the month of December. I had promised her that she would not miss a thing this year...... I was thinking about how frustrated I was with Urology. Then.....all my thoughts stopped.

Me and my car were up on its right side in a ditch. The wheels on the left side where up in the air. I am not sure what actually happened. I was perfectly fine. My car just neatly slide in the ditch and it was fine. Without boring you with all those details, I will say this. I was only delayed about an hour and a half getting home and I was sooo embarrassed by the entire event.

Now, what did I learn......

STOP, BREATH and RE-EVALUATE. The entire night I was so consumed with everything that was going wrong. I was also fretting that it is the Holidays and why does Madilyn have to deal with this stuff right now. I was probably just overly tired because this in not my normal train of thought but my experience of hanging in the air in my car brought me back to my center.

As I sat, waiting for the wrecker, my boss and a surprise visit from a firetruck and 4 police cars, I started counting blessings.

I am grateful for those who love and care from my Madilyn. I am grateful for phone calls that get returned and appointments that get scheduled quickly when things arise. I am grateful for the skillful hands of her surgeons that have been able to preserve function and have been able to make her life better when function has been damaged.

I am grateful for Madilyn's smile. I am grateful for my two older children, Berkley and Tyler, who patiently endure the up and downs of Madilyn's medical challenges.

I am grateful for my husband...who quietly stands by my side and holds me up when I get so rattled. I am grateful for him putting my turkey in the oven on Thanksgiving morning when I was in a ditch. I am grateful for his faith when mine is weak.

My list goes on and on..... By the time everyone arrived on the scene I was smiling and grateful for the blessing of my life.

No Spina Bifida does not take a vacation during the holidays. But, after I stopped and took a deep breath, I realized that we can have a wonderful holiday season not matter what comes our way. This was something I already new. But, I somehow I had lost sight of.

We had the most wonderful Thanksgiving ever. Our family arrived from out of town and our home was filled with love. I found my center and thanked the Lord above for his safe keeping.

May the blessing of gratitude fill your home during this most wonderful time of the year!
Best Wishes,
Jill aka....Madilyn's Mom

And the winner is...

2010-11-24T11:30:00.000-08:00

AND THE WINNER OF THE BEAUTIFUL HEADWRAP BY LITTLE PENELOPE LANE

COLLEEN (from choo choos and TuTus)

Thank you all for entering!! Remember even if you dont win You are supporting a fellow friend/mommy. Putting yourself and your business out there is a big step and its wonderful to see posts and compliments and whatnot out there on the web! Thank you for supporting the blog, and Little Penelope Lane. Make sure you go check her site out on facebook!!

One day at a time

2010-11-22T00:01:00.000-08:00

It's been a super busy week at the HennHouse.

More busy than usual... as the husband had a "mishap" at soccer this week.

That "mishap" resulted in a night-long ER visit and three broken bones in his foot.

Those three little broken bones have kept him off his feet. Literally. He's not been able bear weight, drive, or do any of the routine medical care for Esther-Faith.

Umm... I was feeling a little overwhelmed.

One thing we do at the HennHouse though, is try to see the humor in each adventure. Or FIND the humor.

For example, I find it HILARIOUS that Tim was in so much pain the second night of this adventure that he LITERALLY pushed me off the bed. As in, onto the floor.

Yeah.

I've been sleeping on Esther-Faith's floor the last few nights. Not well. But at least, I remain in the same place where I went to sleep.

And, I find it HYSTERICAL that even though she is not remiss to remind us how tired she is of soccer, we find her in her brother's old cleats shouting out the front door at the other brother who is practicing his skills, or sleeping snuggled up with a stuffed soccer ball.

So, we'll see the surgeon this morning about Tim's foot. And in the meantime, we will take it one day at a time. And we'll try to laugh through the added stress and see the humor through the pain.

by Karin (at the HennHouse)

A letter from you

2010-11-17T20:46:00.000-08:00

Picture something with me.

You are sitting in your living room drinking your morning coffee, relaxing on your couch. (I know we are dreaming arent we!!) All of a sudden you hear a knock at your door. (do you hear the knock?) You open the door to see a woman with fear, uncertainty and every other emotion you can imagine in her eyes. You look down and notice her very pregnant belly. You welcome her into your home and she sits across from you in your living room on your couch. Her story begins. She has just found out that her baby that she is carrying has Spina Bifida. She doesnt know the details, the level or really any of the medical terms. But she knows the fear. She is a stranger to you, but she's just become your friend.

What would you say to her? If you had this moment with every mommy who came across the diagnosis of Spina Bifida what would you want to say? What would you share?

If you noticed on the top of our page Joanna has done an amazing job with different tabs. There is one tab called, "Joining the Journey." This tab is for that mommy. The mommy who might not be able to sit in your living room, but she's on her computer googling and trying to find anything she can possibly find. Maybe she'll find us. What would you want to say to her? If you are willing please write a brief letter 1 - 3 paragraphs long of what you would say. It doesnt have to eloquent, It doesnt even have to be spell checked. : ) But Id love for this tab to be filled with your personal words. If you are willing please send me a message on facebook with your letter or email it to me at kari.leann@hotmail.com

We are a message of hope. I want our message to be clear. I want it to be OUR message not just mine!

Thank you to all of you who I know will undoubtly poor your heart into this.

Kari

ps dont forget to scroll down and support by joining in on the giveaway!

GIVEAWAY TIME!!!!

2010-11-17T09:06:00.000-08:00

SO its that time of year where we all stress about what to get for who. How to pay for what we got for who?And if the who will actually like what we got. STRESS!!

So why not get an amazing gift for FREE!!

As someone who handmakes things I totally understand the work and beauty behind things that arent created in wal-mart facilities and whatnot.

This amazingly beautiful headwrap is created by our very own friend Sarah Hull from Little Penelope Lane

I love them!! I love all of her stuff and want to order a little of everything! The great thing is that these can be for mommy's, daughters, aunts, cousins, therapists. You name it!! You could finish half your Christmas shopping!

Here's a basic description of the product

These easy to wear hair wraps by Penelope Lane are perfect for all ages! One size fits all, as comfortable cotton fabric adorned with two flowers simply tie at the end to fit your comfort level!

So I know you are all dying to know How do I enter!!?? Well the same way you usually enter on here!

There are a couple different ways.

1. Post a link to the giveaway on your blog

2. post a link to the giveaway on your facebook

then after you do that leave a comment about why you'd like to win this hairwrap!

YOU HAVE FROM RIGHT NOW TO 24 of November to ENTER!

A special thanks to Sarah hull for offering her handcrafted talents to us for this giveaway!

a little challenge

2010-11-15T16:33:00.000-08:00

Frequently while I am checking out at a store, or eating in a restaurant I am asked about Carson ( guess he's cute not to get attention) Always, you get the typical baby questions. Age, weight, diet, and then milestones. Oh the milestone part. Here are a few examples....

"Oh, he must just be getting into everything then as he crawls around"

" When did he start crawling?"

" Is'nt so much nicer now that he can crawl around."

And now that he has turned the big one, the questions are going towards walking.

Today, while at Target the clerk who also had a near one year old boy asked me if he had started walking... hers was close.

I quickly answered her "No. not yet, he has spina bifida so were just not quite there." She was obviously curious about it, and wanted to know more.... the door was wide open... and I changed the subject. I had the perfect opportunity and I didn't and grrr am I dissapointed with myself. Now she may go home and google it and become misinformed.

Sometimes these questions and moments are hard. They strike chords in our heart that can bring tears. But ladies, we have an opportunity in our children to help others. To spread awareness. To encourage. Our kids are miracles... Our kids are blessings... Our kids have spina bifida. Let's not hide that, let's not pass up opportunities.

I challenge you this week to somehow tell at least one person what spina bifida is. The truth about it.

Remember we are REDEFINING.

Taking care of YOU

2010-11-14T18:52:00.000-08:00

Kari used to write a regular series called "Taking care of YOU" where she gives advice and tips about taking care of yourself.

You can see some past posts here and here and here.

I thought of Kari and the "Taking care of YOU" series today as I was cathing my daughter in a too small bathroom stall at the outlet malls. We had been waiting for the lone disability access stall for more than 15 minutes as patrons who had too many packages for a small stall used the disability stall, and then I decided we would try a smaller stall.

Esther-Faith was a trooper in the truest sense of the word. She transferred out of her wheelchair--clinging to me--and into the bathroom because there was no space in a small stall for a wheelchair. We wrestled out of one KAFO and half of the other, tucked her dress up so it wouldn't fall into the toilet, tugged and pulled at her pull-up and tights, and balanced her over the pot.

Just as I squated in front of her to provide assistance, I realized, I really had to use the bathroom myself. I mean I REALLY had to go. I should have gone first.

It was a really uncomfortable five minutes as she cathed, tugged and pulled the clothes back on, wrestled back into the KAFOs and shoes with no space to do so, and switched places so mama could do what she should have done first.

There is merit in what the airline flight attendant says about getting your own air mask on first so you can be the best help to your child. The same goes with toileting. Take care of your own needs. Go first.

By Karin

(from the HennHouse)

Spina Bifida Kids

Online Q & A with Dr. Mark Levitt

Courage in sports: Wheels

A New Perspective

Study

Q & A with Dr. Levitt

My favorite part of a "holiday" that I don't like

Celebrate

An Easy Spina Bifida Awareness Project

**Calling All Spina Bifida Friends/Family!!**

Long (and promising) day at clinic

Take THAT Spina Bifida!

First place

Take THAT Spina Bifida!

True Beauty

For you all with love

An apology

Take THAT Spina Bifida!

Sick?

Sometimes...

Scoliosis after Spina Bifida

Insights and MIA

Things have changed

Decisions, decisions

sailboat

Anxiety and cheer

Catcher's Mitt 101

Dear Mommy....oh wait....

Happy Mother’s Day (from a special needs perspective) - By Misty Boyd

Just Stay Calm

Blessings

Egg Hunt

*Heaven's Very Special Child*

So this is life...

Rolling

So Blessed

Clinic day

WE AMAZE AGAIN!

Common Ground

Incentive

Take THAT Spina Bifida!

Trusting through the Grey

Madilyn's Recovery

A Brag Moment for the Thomas Family!

Walker-Free Wednesday

Give Love

Take THAT, Spina Bifida!

Who wants to be a star

Dinner

When Things Don't Go As Planned

Take THAT Spina Bifida!

Taking the scenic route

You Will Never Walk Alone

How do you Redefine!?

Cake-tastrophe

Its that time again

Pre-OP.....done!

Guest Post

Dealing with Disappointment

The Flyer

INFORMATION

Redefining

Watch the Project E.L.I. Documentary

A New Year.....renewed HOPE!

Another talent to share!!

From my family to yours...

For the better

Surgery for Bear

Confession

Friendships can be hard

A Labor of Love

Neighbors

Trying again

Crunches

Finding Gratitude

And the winner is...

One day at a time

A letter from you

GIVEAWAY TIME!!!!

a little challenge

Calling All Spina Bifida Friends/Family!!

Heaven's Very Special Child