A New Perspective

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)

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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

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Study

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

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

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

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

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!!**

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

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!

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

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!

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

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

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

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!

~Lisa (@ Heaven Sent)

Sick?

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...

...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

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

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

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

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!