Through a Glass Darkly

Dear Aaron,

I still go see you each night, although to be honest, I'm drawn more to your garden here than your grave. The other night as I went, I timed it just right for the sprinklers to be going over your spot, and I really couldn't see it.

Oh, I knew it was there. And there was a darker gray outline behind the gray curtains of the water spray. But I only knew it was there because I knew it was there. And in my mind, I could see it, hazy behind the droplets, still with your name, your smile, with the reminder that you are still Compatible With Joy. And those dates that bookended your life here that we crammed so much into. 

And I wondered...

I mean, I know you're still you. You couldn't possibly be anyone else.

A memory popped up from 15 years ago where your Jonny mused to me that perhaps you were the superhuman being and you needed that extra 18th chromosome to be able to tolerate living here among us typical mortals. Maybe...  

Your FIRST first day of school

School started again. You'd be in 10th grade if you were here. Your Linnaea started Kindergarten yesterday and she is loving it. Do you peek in on her? You loved school so much yourself. And you had your own ideas of what you wanted to do there.  

I went to the SOFT picnic on Saturday, only the second time I've gone without you. I remember last year it was windy and hazy, and I didn't worry about your asthma and breathing 'cause, well, you weren't here. And this year it would sprinkle and stop, and then start again. And I didn't worry about electronic medical equipment getting wet. But oh, I wish I still had to. I miss you so much.

My cousin sent me an article from the New York Times called, "Noah is Still Here." I read it and it brought back so many memories. Trached, vented, g-tube dependent. Funny, friendly, outgoing. Playing with siblings and staying up all night. His bed even looks just like yours. It was beautiful, and poignant, and in a way, cathartic. 

Dr. Carey brought me a copy of the AAP News, the monthly magazine put out by the American Academy of Pediatrics. You, my son, are in there.  Back in the 70's, T18 and T13 were lumped together and declared "incompatible with life." That has now officially changed. Routine care, examinations, treatments etc should now be offered to all parents whose babies come with this extra bit. Care should not be denied based on that extra chromosome, and treatment should not vary between institutions. If a hospital cannot provide the level of care needed, the child should be transfered to a higher level of care. And so on. 

And you are part of this. Your baby picture is on the postcards that are being distributed to prenatal centers across the country. 

You touched and continue to touch so many lives, improving outcomes, giving hope, being "Compatible with Joy."

And yet, I still feel the darkness, the cloud, the lack of clarity and I miss your physical presence. 

I guess that's what happens when you love deeply. Those paths you carved in my brain are still there, waiting for something, waiting for you. 

And you're not here.

I know the day will come when I see clearly again, probably even in this life (although I still won't see you). Right now, I'm trying to trust the process. 

I guess that's all I really can do.

I love you, Aaron.

I miss you.

Love,
Mama

"For now we see through a glass, darkly; but then face to face:
now I know in part; but then shall I know even as also I am known."

1 Corinthians 13:12