Thursday, October 6, 2016

31 Days of Down syndrome Awareness - Day 6

Facebook reminded me of this post I made a year ago today.  A year ago I had the honor of delivering a basket from our local Down syndrome group to a family that had a baby all squishy and fresh in the NICU.  They were raw with the discovery that there newborn has Down syndrome.  It was amazing and emotional to travel right back to the the start of our journey.  The yummy new baby is taking his parents on their own amazing journey.  I feel like I've read the next chapter in the book they just started.

October 6, 2015
Often I think that unless you have had complications or a child with special needs you really don't understand what a parent goes through when trouble arises at birth.  When people ask about it I openly say I was scared to death learning that Riley had Down syndrome but I don't really talk about why.  What in the world is so scary?  Especially when people see Riley today.  He's a pretty amazing kiddo (ya I'm bragging again) and if you know him now you really wouldn't find anything scary about it.  You'd probably just think I was the mom who needed to get over it already and celebrate my amazing kiddo.  

The truth can be ugly and  uncomfortable so prepare to get really uncomfortable for a few minutes because I had some ugly things running through my mind 9 years ago.  Before Riley was born I was afraid of the health conditions he might have.   We had a few concerns in addition to just Down syndrome and honestly our biggest concern before Riley was born was how his brain was going to develop. I'm not talking about if he'd be good student I mean I pictured a person not only with multiple physical disabilities but a person that couldn't control their own body, couldn't communicate and didn't appear to be able to understand or participate in the simple day to day life going on around them. A person who required 24 hour care and that wouldn't be able to join in our family activities even in the simplest form.  Now I know that that scenario  is very very unrealistic and honestly I've learned more about how to appreciate life differently.  The people that back then (Before Riley) I didn't think found enjoyment in life I now fully believe  find joy and love in life.  It is amazing how when we don't know about something we become scared of it.  My brain especially likes to run with the worst case scenario.    I should remind you all that I knew prenatally that Riley would have Down syndrome.  I had several months to conjure up the worse possible mental picture  before I had a sweet baby to snuggle.  I like to think that for every snuggle you get your brain cells line back up in a way that allows you see more clearly.  I spent those months before Riley arrived as a neurotic mess.  I had a picture of a child that that couldn't walk, talk or feed himself.  How in the world was I ever going to care for this baby?   I wasn't qualified to take care of this new life that would need so much.   I was angry at God and most everyone else for a while.  Seriously if one more person told me God only gives special babies to special people I might have landed in jail for assault.   I still  need to apologize to the person that said that to me and I asked them what I did that was so f'n special.  I didn't feel special I just felt overwhelmed and inadequate.  

When I was told that Riley had Down syndrome it was like a rug being yanked out from under me.  I was suddenly not allowed to live in that naive world where you think that growing and birthing a baby is the simply most natural thing on earth to do.  In theory it is super simple.  In practice it is nothing short of a miracle every time a baby is conceived, carried to term and arrives in this world healthy. I had rolled those dice once and had Rex.  I had the miracle.  A healthy pregnancy that led to a healthy baby and with that miracle I took all of it for granted.  I didn't know that the fact that Rex arrived in this world with the ability to suck and swallow while at the same time continue breathing was a miracle all its own.  Riley spent 2 weeks in the NCIU learning just that seemingly simple skill. 

I was also very specifically scared of Riley not being accepted and valued as a person.  If his own mother was scared how could I expect others to react to him.  What would his relationship with his brother be like.  If he can't talk how will he ever be independent.  Will everyone always assume he isn't smart because he doesn't speak clearly.  The list goes on and on.  And on and on some more.  

When you have no real experience or knowledge of people with disabilities and specifically Down syndrome your mind can run with the unknown.  What if my child can't____ .  You can fill in that blank with almost anything when you don't have a frame of reference.  That is why year after year I continue to write about Down syndrome and Riley and our life.  I don't want people to pity me or to feel sorry for our family that we have a child with Down syndrome.  I want people to understand that having your emotions run wild is completely typical and you need to allow your self to have all of those emotions.  You are not alone!  If by chance by knowing Riley or even reading about our family your panic is a minute less than mine that sharing the ugly truth is completely worth it.  
I'm not really sure when things got to be less scary.  There wasn't a magical moment when the clouds parted and the heavens sang.  I did find my faith and it helped.   I found strength in my family and friends that have loved me through all the ugly moments.  There have been some ugly ugly moments. I made new friends that are walking a similar path and have found strength in numbers.  I found my sense of humor and my new friends have a sense of humor too.
Most importantly I let Riley be the guide.  I stopped thinking about Down syndrome and focused on Riley.  I don't need to be an expert on Down syndrome I only need to be an expert on Riley.   
In case I was too wordy here is the picture version of this post.  

Don't be scared mom.  (he's even telling you in sign language)
How can you doubt these eyes mom. 

I told you mom.  I've got this.  It's cool.

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