Tuesday, May 1, 2012

Editor's Note: I Guess I'll Just Have To Get a Ladder

Normally Cooper writes in his voice about the events of his life but there is a larger topic that I want to explore that might be too much for an eight month old to understand.  Today, on Facebook, there has been a conversation among parents of children with Down syndrome about our birth stories and what we would have liked to have happened differently.  I haven't shared mine with the blogosphere yet and thought that since it's been on my mind a lot lately and since I've been sharing with a smaller group, now might be a good time to take a stab at it.

Everything about Cooper wasn't planned.  From conception to birth, he was a surprise.  I was thirty seven when I got pregnant and was very shocked.  Being a mom was not on my radar.  I know now that it was the best thing I ever did without thinking but then...I was kind of a wreck about it.  It took me most of my pregnancy to come to terms with it.  I will share with you the daydream that I had that finally got me over the shock and into being excited.  It was simply this tall young man reaching for something off the top shelf for me and handing it to me with a smile.  It was the smile of a soon to be grown up young man that is beginning to realize his place in the world.  He was confident and attractive and he was ready to help his old Momma out.  That's it.  Something about that made it ok for me.  

I had just started to get excited about being a mom when I went into labor a few weeks early.  It was the opening night of the 2011/12 NFL football season. I watched the Packers play some team I can't remember and fell asleep on the couch after eating too much Hudsonville Double Chocolate Almond ice cream.  

At about 1 am, my water broke.  Off to the hospital!

After way too long, my Dr. finally figured out that Cooper was breech and that they would have to do a C-section.  Since his heartbeat was really strong and regular they made me wait until after 5 pm before taking me in.  There are pictures from those few minutes leading up to the surgery that I still can't look at.  It's as if they are from another life.  It's life before Down syndrome and before my Mom passed away.  It truly is another life.  I can only explain it as what it might be like if you were able to peek at your life in another dimension.  I recognize the people and I remember the events but there is a foreign-ness to it that is a little heartbreaking.

I saw it immediately when they showed him to me above the blue curtain that separated me from seeing my insides.  There was something about his eyes.  I kept asking if he was ok and everyone in the room reassured me that he was fine.  There was something in their voices that I didn't believe and I couldn't shake those eyes.

I don't know what happened in the nursery when the Dr. told Bob and my Mom.  I've heard Bob's story about it but that's for him to tell.  I was in my room waiting for Cooper to be cleaned up and brought in, hoping that I was wrong and just a paranoid new Momma.  Bob told me how beautiful he was.  That was it.  I knew it.   He told me that they thought he had Down syndrome but I already knew.

I'm still trying to forgive myself for how I responded.  I am deeply ashamed of my reaction.  I sobbed.  I have never cried so hard in my life.  No, no, no!  This was not happening.  I desperately wanted the baby that I had finally come to love.  Who was going to reach things off the top shelf for me?  I didn't want this.  I wanted what I imagined.

What I know now is that what I imagined was never what I was going to have, Down syndrome or not.  I had created this whole person without ever giving my son a chance to show me who he was.  Cooper has taught me so many things in his very short life but the first thing he taught me was that I had placed my expectations on him and it wasn't fair.  Down syndrome or not, he deserved a chance to be whoever he was without all my baggage to carry.  It wasn't for him to make it ok for me to be a mom.  That was up to me.

Those first few days were pretty rough.  I grieved for the loss of the boy who could reach the top shelf.  I still do sometimes when I get overwhelmed.  But mostly I don't even see the Down syndrome any more.  He's just a little boy who I wish I would have celebrated from the instant I saw him rather than wasting so much time in fear.  Don't get me wrong, I loved him immediately but I didn't celebrate him and I deeply regret that.  I didn't celebrate learning of his conception and I didn't celebrate his arrival.  I think that might be why I bombard the internet with every photo, video and quirk of him.  This Momma has a lot of missed celebration to make up for.  You just wait for those birthday parties!

Cooper is amazing.  He has his own timeline.  He has therapists and a little cavity in his chest that freaks everyone out but the Dr.'s say is purely cosmetic.  Really,  everything that is "wrong" with Cooper is cosmetic.  He is a perfectly normal baby.  Who cares if it takes him longer to do stuff?   He laughs.  He reaches out for me.  He smiles.  He gets scared.  He's growing.  He's sitting by himself.  He can do raspberries for hours (no lie!) .  You can tell when he's proud of himself and you can see how hard he tries.  He's already got an amazing sense of humor...raspberries FOR HOURS!  I couldn't ask for anything better.  I wouldn't change a single thing about him.  OK.  That's a lie.  If he would consistently sleep through the night and it didn't alter anything else about him, I would maybe change his sleep patterns :)

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