9 Years and We Know Nothing and Everything

My oldest son Grayson turned 9 this year. On Thanksgiving Day. It wasn't exactly a smooth day, so we ended up having a do-over the next day. We had a great time celebrating our boy.

As my kids' birthdays tend to do, I was swept up in nostalgia about those first milestone moments throughout pregnancy and then finally getting to hold him in my arms after 27 hours of grueling labor and then an emergency c-section. I remember when they wheeled him into my room for the very first time in his little bassinet, and I couldn't believe he was mine! Mine to love! What a gift! What a feeling!

I tried to remember if I ever envisioned Grayson as a 9 year old during my pregnancy. I can't remember, but I am sure I had visions of a little blond haired boy running around, playing soccer, following in his dad's footsteps.

Of course our story has unfolded very differently than I ever imagined. 

I was just telling Mike the other night thought that I don't really feel like I know who Grayson is.

Oh I know a lot about him. I know he still needs changed multiple times a day. I know I still need to bathe him and wash his hair. I know I need to stand on the edge of the tub in order to use the showerhead sprayer so it has enough clearance to rinse him. (He's gaining on me in height.)

I know he needs me to hold the toothbrush hand over hand as he doesn't tolerate it in his mouth, but we practice it anyway. I know I need to buckle his seatbelt and to hold on to him so he doesn't run off into traffic. I know what to do in order to attempt to keep him from hitting himself. I know his obsessive compulsive impulses mean no ice cream or Oreos in the house, and what doors and appliances need to be locked. 

I know the difference between his happy noise and a noise that indicates distress. I know when he makes his mean face, trouble is coming.

I know that he likes school, and he generally does better there. I know when he needs a hug and tight squeeze around the shoulder, when he wants pressure on his head and face, that he means the Pistachio Veggie Tale movies when he says "Stash-O?"

See. I know a lot. I have been studying my son since the first day I saw his tiny form via ultrasound.

But I don't know him. I don't know his personality because autism clouds so much of who he really is. He is not his diagnosis. He is so much more than that. He's a living, breathing, loving, playing, laughing and sometimes screaming human being. But I just wish I knew more. I wish I knew what he felt about everything, what his heart looks like, what he truly loves. What he sees when he looks up to the sky and wiggles his fingers in front of his eyes. 

I do know a lot of these things about Grayson's siblings, but Grayson is an engima to me.

What I don't know about Grayson, I think, could fill volumes. 

We don't know what it means when he is okay one minute and the next he's engaged in self injury. Or why he slams his fists into walls. We don't know anything at all, and it's so frustrating to me. 

We have A LOT of educated guesses. We have had a dozen people in our home trying to figure out what he is trying to tell us. We have filled out reams of paper worth of evaluations. We have had more consultations than I can count. But...what I wouldn't give to hear Grayson's voice telling me what he wants and needs and how he feels.

So to avoid the downward spiral I feel myself heading into as I type this out, I will pause and remember that first moment when I held him in my arms. He is still very much that little baby but in a growing body. Soon he will be a young man and I won't be able to hold him as easily as I can now. But I will always remember that's he's mine to love. What a gift. What a feeling! <3

Somehow it's been 9 years and we know nothing and everything all at once.