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 -
Hi! My name is Karen. I am the mother of
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
BUT YOU CAN DO THIS AND YOU ARE NOT 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.
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.
Sarah Hull (mother to Katie, 7 -year -old happy second grader with SB, L5-S2, hydro shunted at 18 months)
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. :)
The Penny Family
** 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 firstname.lastname@example.org to contribute. **