Thursday, October 18, 2012

Spina Bifida Awareness Day 19 Carla's Story

Dear Life,

Carla's story is different.  Carla is a mother of a child with Spina Bifida, but Carla also HAS Spina Bifida.  I am so grateful to her for being willing to share her story.  I can't wait for you all to read it!

 "My story of life with SB:   My parents found out I had SB at birth.  I was born in 1977 my mother said that it was a surprise; they knew nothing about SB. I don’t think they had ever even heard of it.  My mother was still in the hospital in Tupelo, MS and I was transported to Memphis TN the next day.  My father went along with me while my mother recovered in the hospital.  She joined us after she was released and my spine was closed when I was 6 days old.  She never saw the lesion; she was told that she could see it but had also been told something about spinal meningitis so she didn't want to remove the bandage out of concern I might be exposed.  My mother is a very strong woman.  She said she just always assumed I would be ok.  I am not sure if it was a doctor or a family member who told her I had a 50% chance of surviving but someone did.  She said a 50% chance is still a chance.  I am sure she was concerned but when I asked her about it she said, “I always assumed you would be fine and you were” “ I trusted that the Lord would take care of you and He did.”


I have always known I had SB my family has always been very open about things and never treated it as if it were a bad thing or even a different thing.  It was just something I had and yeah I walk with crutches but that never made me any different from anyone else.  They are the reason I have the life I do now as an adult.  It was never treated like a disease;  I was taught to do everything for myself and was expected to live a normal life... to grow up, go to school, get a job, move out and have my own life.
I guess Spina Bifida has different meanings to different people.  To me it is little more than a fact about me.  A small fact in a much larger more complex picture of who I am.  I can’t walk but that really isn't a big deal.  I have never walked without crutches and this is normal to me.  It isn't something I wish for or even dream about but I am happy with the way things are.  The other problems that come along with SB I just deal with as they come and go on about my daily life.  I never gave it too much room in my life because I was never taught that it was a big issue just a detail.  No one else ever focused on it so I didn't.
My story as a mom:
My son’s name is Makain.  I found out he was going to have it the same day he was born.  He was born in 1996 so I had the blood work done it came back normal.  Since I had Spina Bifida myleo the doctors always checked his spine when they did a sonogram and they did them at every visit.  From the back view it looked good.  I had 3 amnio’s done during my pregnancy nothing showed up.  I was put under general anesthesia due to the fact an epidural wasn't possible because of the spinal fusion I had.  I remember my OBGYN standing by my bedside and saying he could tell something was wrong as soon as he took the baby out (I had a c section) other than the tears rolling down his face at that time I don’t remember much of that conversation.  The next thing I remember is the pediatrician saying that his neck pops and he did full x rays and he has small holes in his spine from the chest view and he has no tail bone at all.  He wasn’t sure what was going on so he was going to send him to someone who could figure it out.  Like me he was sent to Memphis the day after he was born.

My initial feeling when I was told was well...Ok who better than me to raise a child with this problem.  I have already been here and done it.  I did well he will be fine.  At this time I had no memory of ever seeing him... the one time I did I was so sedated I have only seen a picture of that moment.  After I woke up and my baby was gone my mother explained things to me that the doctors told her and it hit.  I was puzzled; he looked good, he could move his fingers and toes.  I have SB, I know it isn't bad and doesn't insure a bad life.  I knew he was going to be ok but there was this unfamiliar ache that was just tearing at my heart.  I now understand it is just part of being a parent.  You want to take it all away and when you are powerless to do so it hurts!  At that moment and many many moments throughout my son’s life I realized just what my parents felt like.  I understood them and everything they ever said or did in a way I don’t think I could have otherwise understood.  I had now been on both sides of the fence.  I have had SB and been through it and I now have a child with SB and even though his condition was much less severe than mine I would prefer to be the patient.  It is easier in my experience.  It is easier to go through it yourself than it is to watch your child do it.  The fear and heartache during his 2 surgeries were the worst I had ever felt in my life. 

I don’t know why my child has it.  I don’t know why any of us do.  Some people think everything happens for a reason and if that is so maybe it was to give me a better understanding and to share with others the vast difference between what it is like to be the patient and the parent.  I feel it is my duty being given this unique experience to share what I have learned with others and help parents understand.  I what it is like to grow up with it like their children.  But I also understand some of the things they are going through."

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