Joining the Journey

For new and expectant parents of babies diagnosed with SB.
We are so glad you found us.

It seems strange to "welcome" you to this journey. It's not the sort of journey anyone chooses to go on. It's not like a club or team you would sign-up or audition for. It's a shock - a surprise - nothing you could have prepared for. We remember how scared, heartbroken, and worried we were when we first heard the term "Spina Bifida." We remember how overwhelmed, lonely and uncertain the future looked when first faced with this unexpected challenge. We certainly never wished those feelings on anyone else, and never would have chosen to embark on this journey ourselves. But although it is not something we chose - it is something we find great blessings in daily. We cannot imagine our lives without these little miracle children we have been given, and we would never, ever go back to the way things were without them.

We have learned the true meaning of faith, strength, patience, perseverance, hope and love.
And perhaps the most beautiful lesson - we are not alone.
YOU are not alone!
 The following are letters written just for you! Just for the mommies and families who have found out about Spina Bifida for the first time. For the parents who are holding their tiny babies feeling scared and alone, learning words like hydrocephalus and wondering how you are ever going to keep everything straight and stay sane.

These letters are from mommies and daddies, who have walked the road you are walking, stood in your shoes, listened to countless medical terms and otherwise been scared out of their minds. We might be a little farther down that road than you, but we haven't "arrived" yet. We are all still moving along on this journey together. We hope that these words, these letters will help you build a foundation of hope, courage and strength. We hope that on the bad days, and even the good days, you will come back to read these words and feel like part of a family. 

That you will feel -

To a new friend, 
  Hi! My name is Karen. I am the mother of Carson who is an amazing little boy born with spina bifida on November 11, 2009. He is my first child whom I love beyond what words could ever express. He truly is a blessing, and I am so proud to be his mother. Having a child with spina bifida has changed my life. I see joy like I’ve never seen before. I see the Lord’s hand in everyday situations, and I am blessed. If you have just found out that your child has spina bifida I know you are scared, and terrified. I know you have a million questions, and I know your heart is heavy with hurt and grief. Dear Momma, I want you to know that you are not alone on your journey. Myself, and many others have been where you are today and I guarantee that each one of us, if we could, would place our arms around you and whisper in your ear these words (actually we might shout cause we’re pretty excited people) “It really is going to be ok. In fact, It is going to be great.” All of us agree that pregnancy is the hardest part to having a child with spina bifida because there is no much unknown. The second that you look at your precious child, I guarantee you will see perfection and you will only feel pride, love, and joy at the arrival of your child. You see, We have all learned in time that spina bifida does not define who are kids are. In fact, most days, I forget that Carson even has spina bifida. I encourage you to check out the blogs on this website. Our kiddos will redefine what spina bifida is to you…. Guaranteed. Please get to know us. We have an amazing group here, and we are more than happy to answer any questions that you may have.
Your friend,  Karen (

Dear Family,

I will never forget the time I was at the doctors having an ultrasound done on my twins. The doctor was too quiet and finally, he turned to look at me and asked, "Do you know what Spinda Bifida is?" My heart sunk. I didn't know what it was but I knew that it was something bad and something serious. I won't lie to you and tell you that having an abortion never crossed my mind. Of course it did but I knew that if I ever did that to my baby, then I would never forgive myself and I would regret it for the rest of my life. I found strength in my family and especially in my husband. My twins are now three months old and I love them with all my heart. I made the right choice. How could I have terminated my baby that now smiles when he sees me? I can make him laugh and giggle and he loves being tickled and held. He calls out for me when he's hungry and looks into my eyes when I'm feeding him. I am so lucky to have him as my son and I know that I can always hold my head up high knowing that I did the right thing.

But, beyond all the love that I have for him, what has amazed me is how much easier it is to deal with his issues than I thought it would be. It's not as scary now and I don't think about it or dwell on it like I used to. To me, he's just a regular kid. He looks like other babies, acts like other babies and is just as cute as other babies! Life has become routine! And I love it!

 ~ Annalia Ziller

To the new parents on this journey:

I know you feel so alone. Terrified of this diagnosis. Scared for what it means for your baby, what it means for you personally and for your family. The doctors try to prepare you but too often they only focus on the most negative information, many times outdated or just plain untrue information. The doctors diagnosing your baby on an ultrasound are NOT the same doctors who see or treat our babies AFTER they are here. So many doctors you will meet in these first terrifying days/weeks are only giving you information from a book, not from knowing or even meeting any one living and excelling in life that just also happens to have Spina Bifida. If you're like me, you are afraid you are not strong enough to be this new parent to this baby with extra needs. You feel overwhelmed and alone. 
Look around on this site. Look at the pictures and lives of our children. They are beautiful, intelligent, charismatic, fun loving, resilient, HAPPY children. I spent much of my pregnancy so worried for my son. The doctors try to prepare you for worst case scenarios. I have met so many wonderful families with children who also have SB. The "worst" case scenario is so seldomly true. I wish I could have had a looking glass into the future. I wish I could have seen my son Alex the way he is now. He is a beautiful child. He is the sweetest, happiest boy. He is getting into everything that his twin is. He makes us so unbelievably proud to be his parents and he is such an absolute blessing in our lives.  

To those joining the journey,
Gut wrenching fear....we were there four years ago.  Sometimes the fear is still's the nature of Spina Bifida...there are so many many things that we have to wait and see how things turn out.  But the reality is that almost four years ago, I gave birth to a wonderful miracle.  Kumaka was born in Los AngelesCalifornia, on December 20, 2006.  He had what looked like a HUGE hole in his back...we could see his spine.  He had two clubbed feet.  And he had hydrocephalus.  6 hours after birth, they closed his back, placed the shunt, and off he went to the NICU.  We were warned that he could stay up to a month.  It all depended on how quickly he recovered.  We fell in love with him immediately, and he was amazing from the beginning.  He started eating after the second day, and he got to leave six days after he was born.  THAT was the first miracle.  We have been told a myriad of things.....he wouldn't ever walk, he could be cognitively delayed, he may not ever make it.  We were told three times to terminate....when we first saw him, we knew that he was a miracle that God put down on earth and we have been allowed to keep watch over him while he teaches all of those around him every day.  He pushes himself naturally to work hard, to go beyond what the doctors tell him he will do.  When he was one, he started wheeling himself around.  He is working on walking right now, even though with his level of lesion he should be paralyzed from the waist down.  His level is T11 all the way down....but that is just a number.  He is amazingly strong....and is always surprising everyone.  He has four brothers, and he has to be int he middle of all the chaos.  He knows all of their friends, and makes everyone around him smile.  We are currently amazed at his learning capacity...he is learning letters and colors right now.  He knows that there are numbers on the clock and he recognizes some letters.  He knows that our Redefining Spina Bifida shirts say "Spina Bifida".....he makes us smile and he loves everyone.  He may have spina bifida, but he has the most amazing joy for life.  He  never complains....he's had three shunt revisions, three foot surgeries (on each foot) and multiple hospital stays.  He NEVER complains and has soooooo much love for even the doctors and nurses.  AMAZING is what we call him.  The one thing that you must know is that there is HOPE....because SPINA BIFIDA is just a part of who your child is.  Your child's spirit is so much more.  Love your baby....and love the new community you have joined.....and discover that babies unique abilities...there will be so much to rejoice over.  Congratulations on your sweet bundle of joy.....and know that there are so many parents that can rejoice with you and cry with you.  

Kumaka's story can be found on

To the new parents ~
Let me start by saying "welcome to this new adventure." I always say "motherhood is a roller coaster, and sometimes that ride starts from day one!" I wish I could ease the pain and worry in your heart as you process this new life. It is ok to be sad and worried and heart broken. But try and not let it consume you as there are so many more joys than heart ache. Every day that I hear my daughter laugh and see her smile reminds me that she is happy and full of life. I wish I could have seen a snapshot of what our life is with her now and it would have washed ALL those worries and tears away. I won't say it is easy or glamorous, because there are hard days but it makes the good days better. This life is one I would never trade as it helped to mold our family and make us better people. I believe service brings joy. To be able to serve and help our child every day brings our family joy. It also brings other people around her joy.
Advice I always give to new SB moms, is to get organized during your pregnancy. Get a binder where you keep all your information including doctors cards and numbers. Keep a list of your doctors apt's and procedures. It helps SO much to just have it all on one page so you don't have to go back and try and find dates of things. Staying organized helps you to feel more in control. Also, if you don't feel good about a doctor or don't agree with what they are saying, go with that feeling. YOU are your child advocate. I always say "I want the jaguar not the kia" when it comes to my children. I want the best doctors, the best surgeons, the best therapists, the best leg braces, the best equipment. These children deserve the best and sometimes doctors and therapists need to be reminded of that.
I wish you well and hope that you will try and enjoy the journey and this new life. You will see that living with a miracle is a beautiful experience and a wonderful new life.
Much Love,
Sarah Hull (mother to Katie, 7 -year -old happy second grader with SB, L5-S2, hydro shunted at 18 months)

Dear family,
It's a strange surge of emotions when someone new joins the journey. As a mother my heart breaks for you - for I know the fear, confusion, heartache, and worry all too well. But as a mommy to my precious little boy - born with SB - my heart is full of joy, hope, peace, and confidence that you will feel the same happiness I do someday. When the doctor first told us of our son's "neuro-tube defect" we were 5 months pregnant. Like most people, we were told the worst. He would be severely handicapped. Unable to walk, talk, eat, drink or even breathe without assistance. We were told he would likely die at birth - but if he survived he would still have a host of health issues that were unimaginable to consider.  The doctors pushed for termination. I felt as if they were killing me right then and there. The anger, loss, devastation and desperation we felt that day was suffocating. It literally hurt to breath. We couldn't let them take our baby - God had given us this baby - but even with that conviction and faith - we felt so hopeless. Even after we talked to more doctors and got a much better prognosis - we were still terrified. As the months passed we saw our baby growing stronger- and with him our hope grew. One of the biggest sources of comfort were the families of this blogging community. Their children, their lives, their happiness gave us something to hold on to - to aspire to. 
On May 26th 2009 our little miracle baby was born. All precious 7lbs 10z of him! Beautiful chubby cheeks and the most kissable, pouty lips. He was perfect. The baby of our dreams. Everything to follow was made easier by the fact that we could touch his sweet little hands and see his angel face. There was nothing to compare to holding him for the first time. And every time we chase him around the yard, hear his musical laughter, share a snack with him or tuck him into bed we thank GOD for our son. Has it been easy. No. Has it been wonderful. Yes. Every surgery, sickness, hospital stay, evaluation, MRI, therapy session and antibiotic  is difficult - none of us want our babies to go through that. But they are buffered by bedtime stories, swinging at the playground, kissing boo-boos, and lots and lots of hugs. <3 We are a family. A happy family. A healthy family.
We have extra stresses, worries, and unknowns.
But we also have an extra dose of love, perspective, hope, perseverance, and gratitude for what we've got.
There are rainbows through the rain.
Calms after the storm.
Laughter through the tears.
And a light at the end of each tunnel.
So while "welcome" may not be quite the right word...we, none of us, would regret this journey for anything. We are here for you. We are walking with you. We are just like you.
God bless you. :)
Much love,
The Penny Family
Dear Friend,
You must be so afraid of the future and there may be tears too. But hold strong as you will find the strength to go on. My daughter is Faith and she was born in 2010, what an amazing blessing she is to us!  She might have spina bifida and Arnold Chiari ii but she feels life so deeply and expresses her love for us with the kindest touch and little words of expression that would melt your heart. I know some days will feel like a month or even a year and your heart will be heavy with sorrow some days and others with grief. But it is ok to grieve and cry but there is also time to rejoice in a life that is created and waiting to be embraced. Joy, happiness and fun times are there. They are appreciated so much more. Sometimes it might take a little while but there is light in the darkness. The moment I saw my little blessing there was nothing but the greatest love there. 
Your friend, 
** If you would like to contribute a letter of your own to those joining this journey- we'd love to have it! Your words might just be an answered prayer to someone else. You never know how your story may touch someone's life. Please email Joanna Penny at to contribute. **