Trisomy 18

Aaron's 4 Seasons prints behind me.

Dear Aaron,

I've been trying to do my own grief work and found some notes from a lecture I attended. And while what I wrote rings true (oh so very true!) I believe it also misses out on the growth, the love, the strength you brought to me and to our family. (I'll write about those ideas another time.)

I remember when we first learned, or maybe when I first learned about Trisomy 18. I've written before about that 20 week ultrasound where we learned there were a LOT of things going on. I went home and immediately started researching the different findings. Okay, okay, okay... But then I put them all into the search engine at once and it spit out: Trisomy 18. I knew in my heart that day, I knew and oh, how it hurt!!

But time passed (often with a lot of tears) and then you arrived mid-June. Tears continued, especially until we got you home on June 29th, but there were glimpses of joy, of smiles. Like how once they clipped your tied tongue, the binkie you had sucked on so well was now in the way and you would "pop" it out (literally) so you could play with your tongue and your cleft. 

Trisomy 18 was a gift I never realized I needed. I'm a very different person than I was 15 years ago, more forgiving, more understanding, more open, less quick to judge (okay, about most things). Our family is closer, more resilient and stronger too. I have learned to lean in and feel my feelings, and be okay with them even when they're hard.  

I went by your grave yesterday and reached out to touch you in the only way I can now.  Someone else has been coming by as well, leaving visitation stones. I don't know who, but I'm grateful you have visitors. My facebook memories have so many pictures of family and friends wearing blue last year, more than any other year, but I don't think there will be many today. Most people have moved on, and I guess that's okay. You're not forgotten, but the daily fabric of their lives really didn't change much with your passing. 

Mine did, both with your. birth and with your death. I fundamentally changed, and change is good, but it also really hurts. I have to grieve fully in order to live fully.

And for you, Aaron, I want to live fully, like you did, being present in the moment, finding joy in the small things, loving freely.

You have taught my soul.

Love,
Mama 

"Grief and resilience live together." 

– Michelle Obama