Tuesday, October 27, 2015

What the doctor didn't say about having a child with Spina Bifida

Doctors tend to have a lot of things to say when they tell expecting parents that their baby has Spina Bifida. Most of it is bad. Real bad. I've heard story after story from fellow SB moms and dads that were told truly awful things about SB. Inaccurate things. And don't even think about googling Spina Bifida...that will result in even more terrifying words and images.

I wanted to put together a post with all the things the doctor DIDN'T say about having a child with Spina Bifida. I asked all my SB friends to share the good things, all of those unexpected blessings that come with having a child with SB.

The doctor didn't say that I would find a vast online family that would support and encourage me, cry with me and rejoice with me. The doctor didn't say that I would love these people, many that I have never met, with my whole heart. The doctor didn't say that I wouldn't walk this journey alone, that I would have hundreds of dear friends walking the road with me. The doctor didn't say that my life would be enriched and better because of my SB family. -Cassie

The doctor didn't say how much joy this child would bring!! -Megan

The doctors did not say how much Micah would inspire everyone around him with his love for his life. -Sharon

Dr's didn't tell us how much we would come to learn about resilience, patience, fear, trust, understanding, obstacles, hurdles, pain, JOY and laughter that our neural tube defect babies would teach us.... their parents and caregivers...., siblings and all those that encounter these precious beings. -Jennifer

The doctors didn't say how much determination our son would have! -Tiffany

Doctors never told me how my child would defy the odds. How he would stare SB in the face everyday and say, "You do not define me, I define me." Doctors never told me how he would have such a love for sports and play them. Not just play them, but master them. They also never said how our family and community would support and encourage us. He inspires everyone he meets simply because he lives a life full of joy because all he knows is happiness and joy. -Kerri

Doctors never told me how smart my son would be. That he would be considered intellectually gifted. That he would be kind, caring, and a great big brother. They didn't tell me how much courage and strength he would have, that he would never give up on his dreams. -Star

How smart, kind and loving Joshua would be. -Heather

They didn't say how normal our lives would be, for one thing, or how amazing, smart, sweet, kind and engaging my child would be. -Jennifer

Doctor didn't tell me how AMAZING my boy would be, or how many lives he would touch, how magnetic he would be. Doctor didn't tell me what JOY he would bring. That God would deliver us from it all...and life is normal...it's our normal! -Allison

They didn't say how determined Eddie would be or how much personality he would share with the world! They didn't say that I would get to meet people that have the same struggles & are willing to help me through similar situations! Most importantly they didn't say what a blessing he would be! -Adrienne

That we would smile everyday! Because just like our daughter, our son is an amazing gift that brings us an abundance of joy even on the saddest, frustrating or most difficult of days. -Gretchen

They didn't say how wonderful and blessed our lives would be. He is the happiest and determined young man. His life has opened so many unexpected doors and met so many great, supportive people. -Susan

The doctors did not tell me how head over heels in love I would fall with this girl! They didn't tell me that everyday spent with her is an absolute joy and that I need to breathe in every precious second. They did not tell me how determined, stubborn and ready to prove you wrong if you tell her she cannot do something. They did not tell me that I would blink my eyes and she would be a teenager. Why don't they tell how fast they grow? -Carrie

The doctors didn't tell us that our daughter would be just like any other child. That she would make us laugh, make us cry and bring so much love into our house. They didn't tell us that through the bad moments or every days, that our daughter would show us the rainbow of life. They didn't tell us to not worry because we will love our child no matter how she is....and we do, more than we could ever love anyone!! -Ali

The doctors didn't tell me we would find a lifeline in a group of strangers -- people you have never met in person who knew exactly how you were feeling and would pull you from that edge after diagnosis day. You would lean on them in a way you couldn't even lean on your closest family and friends at that time because you were too afraid to put your fears into words. Strangely enough this group would become an extension, your new family of sorts, the ones who you didn't even have to articulate all your thoughts and fears , they knew them already, intimately. They hugged you with their stories of their children, shared their pictures and blessings of "real life", reassured you that you could absolutely be the parent that your child would require, and deserve. They promised much more love than uncertainty would rule our days. They were absolutely right !!!!!! -Holli

They told us NOTHING good! Everything bad she will never walk talk speak! She will spend a life time of pain suffering. They did not tell me how much a beautiful, adorible kind loving little girl she would become! Did not say how brave she would be and how much of a fighter she woud be!
She plays wheelchair basketball, wheelchair tennis! They did not say how independent she would be and how much she would overcome! She amazes me everyday and inspires me every single day! I love when she proves them wrong every single day! Everyone so focused on walking, Olivia does not walk but that does not stop her from doing anything, she just does it a little different in her wheelchair or crawling on the ground. -Alex

Doctors did not tell me how much joy Casey would bring to everyone around him. Or how much of a blessing he would be. He has changed our lives for the better, not the worse. He is not the burden on our older children I was told he would be, but instead their inspiration. They would do anything for him because he has softened their heart and given them a compassion for others they would not have had without him as their brother. He has made me into the strong, faith-filled and resilient woman I am. I was meek and mild before him. I have a voice now and am not afraid to speak up for what I believe. I have been able to share my faith in God with others who are struggling in their own lives and I am credible because they have seen my struggles and Casey's and the way I have been able to handle what comes our way because of God's mercy and grace. Doctors did not tell me how thankful I would be if I chose not to follow their advice to abort my precious boy and follow my own heart's desire. -Dawn

They didn't say that having a child with special needs would somehow create a sibling that has such a caring, thoughtful, and open perspective on diversity and the things that make each of us special and unique. Mason is maddie's big brother, best buddy, protector, And her biggest supporter... Having special needs in our life has created a sibling bond that I believe only comes through special circumstances. If only doctors could measure that kind of statistics... -Selina

The doctors did not say our son would have all the same opportunities as any other child. He would be able to do anything and everything he wants, it just may look a little different. When we were pregnant with our little guy I could not see he would be able to run, play baseball or soccer, climb a rock wall, ride a bike and the list goes on. As a family they did not say how close it would make us. It also makes us all enjoy each day to the fullest and don't sweat the small stuff. -Christy

A lot of people talked about the kids and I agree with all of them! So I'll add that it was the biggest challenge our marriage has ever faced and our husband and I have become closer, more united, and more appreciative of each other than we ever would have. -Becca

The doctor didn't tell me about the way I would find gratefulness for even the smallest things I had taken for granted with my other kids. Things like zip up Pjs, hearing your child's voice for the first time, watching your child wheel his first chair, or even or chase baby food when your baby is 16 months old. He didn't tell me about the friends I would make or that I would be so proud of a kid who has overcome so much in his short life. -Carrie

The doctors didn't tell me how happy my child would be! They didn't tell me how I'd gain a new perspective and appreciation for life. -Casey

Doctors didn't tell what amazing life experience it is to raise Abel and his extraordinary life.


Deinnaann said...

Love this!!! I have a 6 year old daughter with sb level L3-L5.... And she has been the biggest blessing! God brings good out of anything!

LifeAsAConvert said...

All of these are so true. I have a 10 year old with spina bifida. I just recently posted a little of his spina bifida story on my blog. Despite all the complications and issues he has faced, he is pure joy and happiness. I love being his Mom.

Bill Andrews said...

The doctor did not tell me what a total and complete blessing and inspiration my 13 year old bundle of love and determination would be. He did tell me that my unborn daughter would be mentally retarded and paralyzed from the waist down and oh .....by the way....did we wish to terminate the pregnancy? I answered clearly and firmly - Termination is not an option. And as she now runs around with ankle braces and attends middle school with an IQ of 130ish after leaving her elementary school as one of the top 4 5th graders in a 5th grade group of 150 students, I look back and thank GOD again and again for the total blessing of my daughter Mary - an absolutely amazing gift.

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