United by Spina Bifida

If you don't already know about United by Spina Bifida, look us up on Facebook! We have a discussion group & resource page!

Group: United by Spina Bifida

Resource Page:

Online Q & A with Dr. Mark Levitt

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

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)

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

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

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!