Wednesday, December 4, 2013

Heart? What heart?

In five and half years, I have never forgotten Simon's heart meds. Not once.
This morning in the hospital the boy blessed me with a 6:40 wake up; so much more civilized than yesterday's 5am wake up. We snuggled in bed for almost 20 minutes, played with the talking Hulk doll that he now can do a great imitation of  (Hulk smash! You want more? Hulk smash more!!!) and then got dressed in a leisurely fashion before heading down the hall for our first feeding session.

It wasn't until we came back from our post feeding session gym time that I realized that the child had not gotten his meds.  I only realized because the nurse came by to apologize for not bringing them before 8:00 like she's supposed to.

I couldn't believe it. I had completely forgotten his meds. This is the kind of shit that I am usually on top of. It's ingrained in my brain like knowing to put on clothes before walking out the door. It's been so automatic for the last five years that even when Jaime is on Simon for meals and meds I can't help but ask her if she's  given certain things at certain times because it's just part of my body clock now.

Today however, not only can't I tell you what day of the week it is but I didn't even notice that the nurse hadn't brought Simon's medications to him for over an hour and a half after she was supposed to.  I can't tell you the date except that I know there was a Disney sponsored holiday party from 5-7 and while it was happening where Turtle Talk usually happens, Crush would still be showing up to talk to Surfin' Simon without fail.

We have feeding sessions, we have playroom time. We have meltdowns and upswings and food scavenged off post therapy trays. Simon is amazing. He is testing and surprising and strong willed and willing to learn. He is attentive and takes breaks and loves his 'team'. His imagination is so rich and travels us to lands and adventures that simply make me smile- except when I have to be Captain America to his Hulk and really focus on the bad guys.

I feel more than a little exhausted but got some fresh air today as Simon and I walked the perimeter of the hospital campus searching for the green space that someone told us about. We couldn't find it but the quest was worth it for the vitamin D and non-recycled air.

Onward and inward (cuz that's where the food needs to go)

...and scene.

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