From A Girl Named Charlie: What I Know

Before I ever had kids, I used to walk past the severely and profoundly disabled class on the way to my room every day and think, Man!  It really takes a special person to be a special ed teacher for those kids.  I admired their dedication and never considered just how much physical work went in to caring for those students day in and day out.  I became friends with one of the severe and profound teachers and was enlightened at all the preparation that goes into the curriculum for students with major physical and mental disabilities.  It astounded me.  I was in awe.  I couldn't imagine what the parents of these students dealt with after hearing what the teachers did for them.  I remember thinking, There's no way I could ever do that!  It really takes a special person to care for such special children.  God bless them! Parents of special needs children are extra tough.  I can't even imagine how strong they must be to deal with their child's disability on a daily basis.  

I want to slap my former self across the face.  

Ten years later, I am the mother of a child with special needs.  I hate it when people tell me they don't know how I do it or they "couldn't do it" or "God only gives special children to special parents" because it's simply not true.  After two years of raising and caring for a child with non-typical medical needs, here's what I know about myself:

1.  I'm weak.  I realize this and I'm okay with it.  When Liv was first diagnosed, I thought it was so important that I appear strong and pulled together.  I managed to talk about Spina Bifida and all it entailed with clear eyes and a steady voice, but inside I was a shaky, crumbling, fragile mess.  I constantly heard people say that God won't give you more than you can handle, but I questioned whether or not I could handle her diagnosis.  I didn't feel equipped, emotionally or intellectually, and sometimes I still don't.  The prospect of an impending surgery or new care routine still makes my head spin and my heart race and the fight-or-flight instinct to kick in.  Sometimes I want to take my family and run away from Spina Bifida, and if there were aspects of it that weren't potentially life-threatening (like shunt and kidney issues), I think I would. 

Me that first night after diagnosis

  

2.  I'm more parts "normal" and "frazzled" and less parts "amazing" or "dedicated" or "(fill in the blank)."  I'm normal because I'm a married, working mother with two kids and a moody dog.  I'm frazzled because, well, I'm a married, working mother with two kids and a moody dog.  Thankfully, right now SB tends to take a back seat to everyday life, and for that, I'm extremely grateful.  If you consider being almost eight months pregnant and getting myself and two kids dressed and out the door every morning on time "amazing," I'd be okay with that.  Otherwise, I'm just a mom who loves her kids, SB or not, and does whatever it takes to ensure they are happy and healthy and taken care of.  That's the type of dedication required of every mother who cares.
   
3.  I'm pretty happy.  This was the scariest prospect for me when Liv was diagnosed, and something I'm so ashamed to admit.  October 6, 2011 was (and still is, if we're being honest) the saddest day of my entire life.  I have never, ever, ever felt a deeper despair.  I didn't know I could feel such crushing grief for someone I'd never even met.  When I pictured our lives with SB, I didn't see happiness.  I saw pity from others, endless medical problems, and struggle, struggle, struggle.  A time-machine would have been nice, or maybe a visit from the Ghost of Christmas Future, to show me that not only would we indeed laugh again, but that it would come much sooner than we thought, long before Liv was even born.

See?  She's happy.  I'm happy.  We're all so freakin' happy!

4.  Most of the time, I only get half of my stuff done.  This is kind of in reference to the whole "I don't know how you do it all" sentiment that I hear a lot.  It seems like I take Liv to the doctor all the time because she has so many specialists, which would be enough to boggle any busy person's mind.  Truthfully, the only doctors she sees are neuro, urology, and an orthopedic specialist.  Her pediatrician visits are growing fewer and farther between now that she's two and the developmental pediatrician is once every six months.  Most of the time, my house is half clean, my laundry less than half done, and the dishes are partly put away.  I justify this by referring to something I read on Facebook that said, "Cleaning house when you have kids is like trying to brush your teeth while eating Oreos." 

This is crap I did not get done.         

6.  Day to day life around here is pretty routine and boring.  And I'm okay with that.  Our days pretty much look exactly the same as the one before, with the occasional adventure sprinkled in.  I'd rather be living an uneventful life as far as SB is concerned than a colorful roller coaster ride that takes thrilling twists and turns, always leaving us guessing where we might end up next.  We're just doing life, raising our girls the best way we know how, learning along the way. 

From A Girl Named Charlie: Upon Diagnosis

If you've somehow stumbled upon this blog after doing a Google search, welcome!  

You may have just been told that your child has a neural tube defect called Spina Bifida. Or maybe you're the family member or friend of someone who has just received this devastating news.  Either way, I'm so glad you're here, even if it had to be under these circumstances.

When my doctor said, "There were some abnormalities on the ultrasound that are consistent with Spina Bifida," I felt like I was going to die.  I wanted to.  I quite literally felt like the whole world had stopped and thrown me into a raging whirlwind of fear, grief, and uncertainty.  For two days, I wept, prayed, mourned and wept some more.  I grieved the loss of the baby I thought I was carrying and instead felt pregnant with a diagnosis rather than a tiny, little person.  I craved the days of my pregnancy before the diagnosis with an unimaginable desperation.  For the first time in my life, I cried out in my sleep, waking myself up multiple times that first night sobbing.  I went to bed with a headache and woke up with a migraine.  

Liv
20 Weeks
October 6, 2011

And then my husband, to whom I will forever and ever credit with pulling me up out of my funk, said this to me:

"Cheer up, Charlie.  This isn't the end of the world."  

That was all I needed to hear.  I slowly began putting on my game face and quickly determined that knowledge is indeed powerful.  With that being said, here is what we did in the immediate days, weeks, and months following Liv's diagnosis that were integral in shaping our positive attitudes and inspiring confidence in our ability to be parents to this precious little person:

  

1.  Immediately upon diagnosis, we went to Maternal Fetal Medicine where the presence of SB was confirmed by a perinatologist.  This is just a fancy name for Specialist OBGYN.  Don't be intimidated.  

2.  After getting a confirmation diagnosis, we then asked to be referred to a Pediatric NEUROSURGEON.  This is important because many times people are mistakenly referred to a Pediatric Neurologist, which is totally different.  They know nothing about outcomes with SB.  Trust me.

3.  Once we spoke to the Pediatric Neurosurgeon, I began researching and reading, absorbing everything I possibly could about Spina Bifida.  I bought two books on Amazon: Children with Spina Bifida: A Parent's Guide and another memoir written in the early 90's by a father of a son wtih SB.  It wasn't nearly as helpful, so I'm not going to bother sharing the title.  Here are some other invaluable resources to check out:

• Spina Bifida Kids (A group hosted on Babycenter.com)
• The Spina Bifida Association of America (You can find the website for your local SB chapter on this site as well)
• Spina Bifida Connection (This group is geared more towards adults with SB but also contains some valuable threads regarding kids and SB)

Spina Bifida Kids on Babycenter's website was by far the most useful resource for me.  Many of the parents who post have blogs and usually you can find them in the signature lines of each person when they post a message or comment.  This is where I ultimately found hope and confidence that life with SB wasn't going to be the awful, sad experience I initially thought.  

4.  Ask questions.  Write them down.  You'll forget them if you don't.  You'll wake up in the middle of the night and kick yourself because there was something you wanted to know that you forgot to inquire about.  

5.  Put together a binder.  Inside it, you'll want to keep any information, handouts, confirmations, reports, anything the doctors give you.  Eventually, you'll see a multitude of specialists and you'll want to keep all that stuff straight.  Plus, you can put your questions in here and carry it all with you to your appointments.  Did I mention you need to write down your questions as you think of them?

6.  Don't be afraid to kindly ask your doctors, especially the neurosurgeon, to explain things to you in a different way.  Sometimes they forget that not everyone is familiar with terms like "corpus callosum" and "myelomeningocele."  I've found that they are always happy to re-explain things to me if needed.  (Which it probably won't be since you'll be a researchin', technical-jargon usin' fool in no time.)

There were other things we could have done that, in hindsight, would have given us even more reassurance about the future of our sweet little Liv.  We didn't contact any other parents of little ones with SB.  At the time, it was just too overwhelming.  I wasn't ready to face an actual person with this defect when I didn't quite feel capable of dealing with it myself.  Nineteen months into this journey, I wish I would have.  I really think it would have helped.  Reaching out to other members in our immediate community through our local Spina Bifida chapter would have also given usa good support network on which to lean during my pregnancy.    

I hope you've somehow been given some measure of comfort by reading this, no matter who you are or where you're at on your SB journey.  If this is all just starting for you, please remember:

 Everything is going to be okay.  I promise.  It will.

Love,

Charlie

Pets With Spina Bifida

My daughter was diagnosed with spina bifida when I was 30 weeks pregnant and had an extra ultrasound to check her growth. There hadn't been anything unusual noted on her 20 week anatomy scan, so I felt blindsided. I didn't have any sense of what spina bifida was or what it would involve. Now five years later, I have become a pro at explaining spina bifida to family, friends, and teams of therapists and teachers at IEP meetings.

A couple years ago, I came across the Facebook page of a little cat who has spina bifida. I was surprised that cats could have spina bifida, because I never really considered it. None of my research into how spina bifida would impact my daughter even mentioned that it wasn't a condition that is unique to humans. Further googling revealed that dogs can also be born with spina bifida, and some of them had their own Facebook pages too. My daughter was delighted to see animals wearing diapers and scooting around in carts, because they had spina bifida just like her!

Now we have a new member of our family! 

This little sweetheart is Soot. My daughter named her Soot Gremlin after the little soot gremlins from Totoro, because like her namesakes, Soot is tiny, black, sneaky, and can blend in wherever she hides. My daughter finds these qualities admirable. In Totoro, the soot gremlins live in the shadows in an abandoned house and move away when they decide the new family that moves in is nice. Soot has decided that we are nice, but rather than moving away, she is spending far less time hiding.

Soot is a manx, and she has spina bifida too! The mutation that leads to the shortened or absent tails in manx cats can also cause spina bifida or other spinal abnormalities. In dogs, spina bifida is most common in bulldogs. Dogs and cats of any breed can be born with spina bifida, but it is very rare. Just like humans, the severity varies with each case depending on the amount of nerve involvement.

Soot has spina bifida occulta, which is the least severe form of spina bifida. She can use the litter box and walk independently, but her back legs are weak so sometimes she hops and wobbles, especially when she is tired. Even pets with more extensive special needs can live wonderful lives too!

We are so happy to have Soot as part of our family. My daughter loves having a pet who shares having spina bifida. 

I set up a page Soot the Kitty With Spina Bifida to help raise awareness of spina bifida in humans and in pets. Neither Soot nor my daughter let spina bifida stop them!

Though sometimes everyone needs a good nap!

(A shorter version of this post was originally posted on my personal blog.)

My Open Letter To Expectant Parents:

Greetings !


I spent so many days trying to think of a way to introduce myself to this blog. I wanted to be entertaining yet, informative and reassuring yet, not sugar coating anything. But then I realized no one out there in internet land really knows me or my story. So it doesn't really matter how I start off! Because if you are reading this blog you don't really care about me, you are here because at one point in your life, you heard those two little words that forever changed everything: Spina Bifida.

Allow me to start with an excerpt from my own blog that I would use to keep my long distance family up to date with my Baby #1 while I was pregnant with twins - aptly dubbed Thing 1 and Thing 2:

Dear Thing 1 and Thing 2,

I hope you know how much we love you out here and can't wait to hold you in our arms. YOur big brother gives you a kisses everyday - and even smeared his oatmeal all over Mommy's shirt yesterday giving you some of his breakfast! He is such a good sharer! As for September 12, well that is just another day on our  growing list of days that we will never forget. THat is the day we found out that Our little THing 1 is already a fighter - even on the inside. At a routine ultrasound  we heard the words you never want to hear as an expecting new parent - "something doesn't look right". Our minds raced with fear and the tears began to flow. "What does that mean?" "What could possibly not be right with our perfect little angels?"As the doctors and nurses did their best to act like this was an everyday occurrence, I held your daddy's hand and knew - something was drastically wrong. The next day we went for further tests and vacantly listened as the doctors explained the words "Spina Bifida" to us over and over again. As I listened to their calm and comforting explanation of what was taking place under my own skin I couldn't help but just sit their and silently freak out - QUIT TALKING AND SOMEONE HELP MY BABY!!! How could you be so close - and still we could do nothing to help?? Nothing but wait. It didnt seem fair.

My mind raced with fears and worst case scenarios. How could this happen? What did I do wrong? Were you in pain? What was your future going to be like?  Then suddenly amongst all my panic of doom and gloom I realized something I must never lose sight of again - You are my babies. Both of you. You are my little miracles - and it is not my job, but my absolute honor to love you both no matter what. I suddenly felt so ungrateful and selfish for all my negative thinking. Who was I to limit you before I even laid on eyes on you? Who was I to question what God has in store for us? From that moment on I promised you that I would stay positive while we sit and wait. I promised you  I would not let this diagnosis define you nor will I let it overshadow your arrival Thing 2. I realized Spina Bifida was not the end of the world and we would happily adjust to whatever 'new normal' our life would be like once you two arrived.
Well My Thing 1 and THing 2, no one ever said parenthood was going to be easy. A week ago, I thought the hardest thing I would have to deal with was having not 1 but 2 (ok, 3) colicky babies. It's funny how things can change in the blink of an eye. Just know that you two have a whole team out here pulling for you guys and praying for your safe arrival. You have a whole, big, loud, obnoxious family ready to love you and spoil you and secretly fill you up on candy when mommy is not looking. You two, along with your big brudder Isaac, are our precious, little perfect snowflakes and your Mommy and Daddy love you very much  - today - tomorrow  - and everyday after that.
So rest up in there Little ones and enjoy your final months of peace and quiet. I can promise you wont get much of that out here. :) Thing 2, keep an eye on your Buddy in there for us. Thing 1, get ready to be grounded for all the worry you put your Mommy and Daddy thru the past few days.
As for you Isaac, You just continue being the amazing little creature you are.

Odds are if you are reading this, you may be pregnant with a little one diagnosed with SB and you slightly freaking out right now. This entry is for you!  Also like myself, you probably googled Spina bifida  - against everyone's advice to stay off of the computer - and happened upon this blog. Perhaps someone referred you here to see all the beautiful babies and smiling faces of Spina Bifida. And maybe, just perhaps, you are still on the fence of whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with SB has had parents who stand exactly where you are today. We all freaked out, we all cried, we all doubted our capabilities - yet for every person living with SPina Bifida today - we all got over OUR fears and became a stronger parent for it. You can do this too!

The greatest advice I ever received when I was pregnant with my twins (now renamed Jake and Lucy)- and Lord knows I got A LOT of advice! - was that one day I would wake up and SB wouldn't be such a big deal. Back then, I remember thinking the CHOP nurse who told me that was crazy! And then one day it happened: I ran out of diapers. Keep in mind I now had 3 babies under 3 years old and we go through A LOT of diapers!!  I thought "Oh Crap! We are out of diapers, I have to run to the store!" I never thought Oh Crap! Thing 1 has SB and now we are out of diapers!  or  Oh Crap! Thing 1 has SB, how can I go to the store? It was just the simple realization that life was going on anyway - regardless of Jake's SB or not. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly I realized I was still a mom - and those babies needed me to be the best mother I could be.

I always said if I could have met my Jakers when I was pregnant with him I would have never cried a single second over his diagnosis. So he has some issues - his crazy-temper tantrum-screaming all- the- time-hides-food-in-her-toy-box twin sister is on track to have plenty too :) To know him is to love him. His smile, His crystal blue eyes, His belly laugh, his ridiculous Sean Cassidy-esque hair - he is completely perfect in every way. Sure his feet are a bit funky and he constantly has a stinky diaper, but I wouldn't  change a thing about this lovable creature…well, other than his ability to fight off a sleep like it is his job!

So Mama or Daddy if you are reading this and wondering how in the world life is going to go on - or how can this happen to you - I am here to tell you YOU CAN DO THIS.
So get up, strap on your big girl (or big boy) pants and get ready! Because this baby  - YOUR BABY - isn't going to take any mercy on you! He or she will be here in no time and your heart will be stolen the second you meet! And very, very shortly after you will be wondering what the heck you were so worried about…Just don't forget to buy plenty of diapers! <3

Up and Running

This blog has been dormant for the most part for the last little while.

But not for much longer!!!!!  

Get ready blog readers. We are getting up and running again!! We added some new writers and still have some old writers.

We are looking forward to using this as a great resource again!


We apologize for the long lag in updating. Life gets in the way sometimes.

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