Trisomy 18

Dear Aaron,

Today is St Patrick's Day; you do actually have Irish in you. 

And tomorrow, tomorrow is Trisomy 18 Awareness Day.  March 18, 3/18, three of the 18th chromosome, that "love" chromosome.  I'll be wearing blue for you. 

And I have no idea what to say about it. It almost feels like I've already said everything. Each year on this date (or around it) I've written. 

I'm struggling, kiddo. Right now I mostly feel numb. Or I hurt. I'm assuming it's temporary, but I don't really know what "temporary" means here. I'm going through motions, not really wanting to "do" anything, maybe in part because a lot of the things I needed to "do" have already been done.

Your equipment is all gone, well except the suction and pulse ox machines I'm keeping for the time being.

Your van, your bed, your gait trainer, your bath chair, your wheelchairs, your car seat, your lift; not to mention all the supplies we used monthly; all gone. The equipment company came and took your ventilators, feeding pump, extra pulse/ox, humidifier, and all the many, many oxygen tanks we had. 

I've cleaned your room and reset it as a living area again. I'm nowhere close to being ready to go through your closet with all your blankets, stuffed animals, clothes and go bag. 

All these "things" that were so necessary but only because they supported you, and I guess I don't really miss them.

But I do miss you. And it hurts.

So is it worth it? Worth having known you, fought for you, loved you?

YES!!

It absolutely is. Even knowing the soul-crushing, mind-numbing, physical heart and lung aching pain I feel, I would do it all again for the privilege of being your mom. 

You, my son, are amazing, wonderful, such an incredible teacher.

And maybe that's what I want to say about Trisomy 18. 

It gave me a gift there was no other way to receive. 

Sometimes a parent is asked (it's always a hypothetical question when it's posed) if they would give their life for their child. And of course, they always say, yes.  But here's the thing, Aaron, I did that. Special needs moms of medically complex children do exactly that. We give up sleep, we learn, research, and study. We fight for care. We teach others. We give our lives to keep you alive. 

And then when your life is over, when your heart and lungs stop and ours keep going, it's a surreal, strange experience. 

There's the feeling, the sense, that we have that if we can just learn enough, work hard enough, fight long enough, we can stave off the inevitable. We can't. We can postpone it. We can create time to build more memories we can cherish. But we cannot stop death. 

And then, we have to reinvent ourselves again, missing a crucial part of our souls. But maybe, maybe that's where the growth comes, because I am still here, still learning. And I hope, Aaron, you're proud of me. I don't want to do a lot of things, but I still try to do them. I'm trying to put myself in the places I know I should be so that I can. Often, it's a struggle, but I'm trying. I have faith that if I will continue, good will come, and those postive emotions, feelings, that are so very absent now will return.   

Yesterday I went to your grave. As I sat on the grass, I could smell spring, new life, maybe even a glimmer of hope. Easter is coming. Someday we'll be together again.  

Love you, my little leprechaun. 

My heart may be broken, but it will never stop loving.

~Jessica Garay