Monday, April 4, 2011

The Road to Acceptance- By Cary from "About the Small Stuff"

Today I want you to meet my friend Cary. Cary has two adorable twin boys, Ben and Daniel. Ben has Cerebral Palsy, the same type that Nina has. I first found Cary's blog as I searched for other blogs writen by mom's of children with CP. I began e-maiing with Cary and asking her many questions about CP and what worked with Ben and what didn't. Although Cary helped me much in that area, I never expected that her friendship would push me to deal with Nina's diagnosis. Because even when you knowingly adopt a child with special needs, you still have to grieve their diagnosis at some point. And Cary was someone that God used to open my eyes and my heart.

For this reason, I asked Cary to write a post about dealing with the diagnosis of Cerebal Palsy. Enjoy her words!


The Road to Acceptance

I never really believed that I would get to this point.  I think back to those first months after hearing those fateful words…the words that made me feel like our family would never be the same again.  The words that I still hear sometimes…”you know Ben has CP?”  I remember reading blogs by Moms who had older children with CP.  They would write about the joys in their life.  About how they had stopped crying.  About how much they were enjoying life and their child.  And I thought that they were lying to the world or that they were so deep in denial that they were never going to get back out.

But you know what?  I’m one of those Moms now.  Two and a half years later, I’m writing similar things.  And feeling similar things.  Truly.  And no, I’m not lying and I firmly believe that I’m not in denial either.

But it was a long road to here.  A road filled with many, many evenings of Google searches and heart-wrenching sobs as I thought of our future.  Of Ben’s future.  Of Daniel’s future.  Yes, Daniel’s future.  I mourned the “normal” twin brother that he wouldn’t have.  The brother who wouldn’t be able to climb trees and ride a bike and play football with him.

There were fights with my husband when I didn’t see him doing endless Google searches too and trying to find out just about every single thing about CP.  I didn’t understand why he didn’t feel the overwhelming need to know.  While he sat there wondering why I was putting myself through such agony every single night after Ben went to bed.

And there was jealousy.  So much jealousy.  Not of regular families with regular kids.  But of families with regular twins.  Seeing twin boys running around and playing together was like putting a knife through my heart.  It was the death of all my dreams.  My dreams of a life with twins.

But slowly, ever so slowly, I started looking up from my computer screen and looked at my son.  My Ben.  My perfect Ben.  I could never cry or feel sad when I saw him.  He is so joyful.  So happy.  You should hear this boy’s laugh.  There is nothing in the world quite like his laugh.

And I started coping with this hand we had been dealt.  And yes, in some ways that I’m not particularly proud of.  I started looking around and saw how good we really have it.  And yes, this meant reading lots more blogs by Moms of children with special needs and comparing situations.  That may sound horrible, but I believe we all do this at some point.  We need to… in order to see that life isn’t quite as horrible as we thought it was.  And I began to see Ben for what he COULD do and not what he COULDN’T do. 

I started to feel gratitude.  Real gratitude that we had been given so much.  Gorgeous and healthy twin boys.  Yes, one can’t walk, but how important is that when you consider all that he can do?  He talks.  And laughs.  And eats with his own hands and mouth.  And breathes all on his own.  And with help, he can walk.  And run.  And jump.  And even ride a bike. 

And then, after many, many months, I decided to change my mindset.  I decided to stop thinking that something “happened” to Ben.  This may seem silly to some of you.  But for me, this was the biggest thing that I did in order to come to peace with this diagnosis of CP.   For so long, I kept thinking about what “happened”.  When did it “happen”?  Before birth?  During birth?  After birth when he was on a ventilator for 4 days after his lungs collapsed?  Was any of it my fault?  Was it the doctor’s fault?  Why did this happen to us? 

So when I stop thinking that it was something that “happened” to him.  And that this was just how Ben is.  That I found real peace.  Because Ben is wonderful.  And perfect.  And mine.  Thank the universe that he is mine.  No one else gets to experience that joy that is being his Mom, but me.  And I’m the luckiest mom on the planet.


2 comments:

  1. As a mom of twins with a little boy with CP, acceptance is my goal. Sometimes I think I'm almost there, but then something happens and I'm sucked back in. Thanks for the great post!

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  2. I've met a lot of parents of children with CP. Thank you, Cary. You are showing the way to mothers like Ellen. Seems to me that 'acceptance' is not something that can be pushed along. A parent must live it, in their own time.

    Barbara

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