5 mos as a mom with a child with downsyndrome

Last month I was in the grocery store with G-man.  Just the 2 of us.  He was in his stroller, hooked up to his feeding and O2 tubes.  I just had to grab a couple of things.

We were in line in front of a lady with 4 kids.  They were all close in age and super well behaved.  She still looked disheveled.  I guess the totally "hands on" moms look worked.  This is no job for the prissy!!  ;)

She noticed G-man and asked me what was up. 

It floors me that I am now the mom of a child who gets "the looks" from strangers.  Floors me.  F.L.O.O.R.S  M.E.  I totally see what it's like now to be on this side of the fence.  And I can say, in all honestly, that I WANT people to ask me.  Because I KNOW they see him.  He has tubes.  He looks a bit different.  A bit gorgeously different, but different all the same.  I want to tell the world about him, not have him be some curiosity fodder.

So she asked me. 

And I told her. 

All about his heart I told her.  How he has a handful of things wrong but seeing doctors who will operate on him etc.  Come to find out her oldest son also had open heart surgery.  Come to find out, we share cardiologists!

And that's as far as the conversation went.  Just his heart.

Nothing about his having downs.

I couldn't.

Because I knew if told her he had downs, I'd start crying.  I knew that if she saw me crying, she'd think that I was sad that he had downs.  I knew that she'd think that maybe I felt I was cheated.  That life sucked to be a mom with a child with downs.  That I was stuck with a burden for the rest of my life or his. 

And quite frankly, I didn't have time to explain my tears.

I had time to explain my tears though to a teller at our bank.  I've gotten to be good friends with her actually.  I was at the bank a few days later and we got to talking.  She knew all about G-man and I knew all about her youngest brother who is now 52.  Both have that extra chromosome.  I told her about my experience at the grocery store.  And to her I explained my tears as they came pouring out, right at her desk.

"I couldn't tell her because I knew I'd cry.  And I knew she'd think I was sad.  But I'd have cried because having a child with downs is so special."

We both started crying actually.  She shared with me the intense bond her own mom had with her baby brother.  How they had such a special connection.  How when she passed away, he KNEW even before anyone told him.  How during her last days, only he could bring her out of her lucidness, how she would always ask for him and only him.

Having G-man as my son is the most special thing that has happened to me.  It's a constant spiritual experience.  It's an awareness that he did some pretty amazing things in the pre-life that granted him protection here on Earth.  When I hold G-man, every fiber of my being tells me that he's older than I am, that he's more advanced than I am.  I can already tell he's more patient.  I can already tell that he's more accepting and loving of others than I am.  I can already tell just as he took me by the hand in the pre-life and helped me do who knows what, he will continue to take me by the hand in this life and help me to do who knows what.

It's such a special privilege, blessing, to have him.  Which explains why it's so hard for me to tell people about him, about the REAL him, because it's so special.  It's almost sacred.

And this further explains my complete and absolute mental and emotional condition as we hit the 10 day countdown to his surgery.   Be it known, I'll be a complete mess.  I know how I'll handle it.  I'll go into survival mode more than ever before.  I won't visit friends, talk on the phone, nothing.  Cuz it's how I deal.  I'll escape to my quiet place in my mind as I try and distance myself from my reality.  The reality that I could possibly lose G-man and not have him with me.  I know this is a complete lack of faith.  It is.  It's also how I try and protect myself from what could be the greatest pain I'd ever feel. 

I'm too afraid of thinking of hoping for a future with him because a future with Gideon, a heart healthy Gideon, would be like having an angel accompany me here on Earth.  It would be just so awesome!

If you're reading this and if you've been given the news that you are pregnant with a baby with downs, please don't take this as bad news.  If you've been given the "opportunity" to choose between keeping the baby or aborting, believe me when I say, you are carrying a literal angel and you will know this the minute you hold your baby.

Shame on our health care system to address these pregnancies as "oh, I'm sorry, but ..."  Health care providers should hand golden tickets to moms carrying babies with Trisomy 21.  These moms should be applauded, should even be admired.  Because we get to raise angels.  And we get to experience a bond with these special babies that no other knows.  I have a close and special bond with all my kids.  But with Gideon, it's different.  It's beyond an "intense desire to protect."  It's more like, ... he completes me like no other.  We are each others.  I am his and he is mine.  It's like the most intense love story ever. 

He lets me soothe him like no other.  He cries and when I hold him, his calming down is practically immediate.  When I'm angry, all it takes is a few seconds with him, holding him, and my anger ebbs.  A tiny smile elicits a belly laugh from me.  Gideon and I have a connection.  It's a heavenly connection. 

Moms who have kids with downs will understand this connection.  Don't abort.  You will lose out on so much.

It's only been 5 months and I've learned this much about Gideon.  I pray and pray and pray that I get to keep him for so much longer. 

He's my buddy.