Wednesday, December 11, 2013

Telemarking & Tanking

Telemark skiing is intense with deep lunges and a sharp curve (thank you Wikipedia). It's a great metaphor for about half the meals taking place in the last 24 hours. I have seen Simon take more bites himself in a shorter amount time, with greater chewing and drinking skills, in the last day than ever before. It's truly wonder-full to sit with him and eat some food myself as he works his fork and spoon from plate to mouth. We've come so far in just a week and a half and the therapists keep telling me that his progress is so palpable and my work with him, "just amazing".  It feels good. It's important to remember that every single one of them has been doing this for years and has seen so many kids come through the program.

Those are the good moments.

Then, and unfortunately, the day ends with Simon and I doing dinner and then last snack on our own in the hospital room. Tonight ended with a dinner of less than five bites of food and a tantrum of epic proportions when he flat out refused anything for last snack, thereby losing his chance to go to the playroom for 30 minutes of play. We had four fucking bites of Frosted Mini Wheats left. Instead he had to ask over and over again if he could give me a check up complete with echocardiogram.

I DON'T NEED AN ECHOCARDIOGRAM!!!

I fully admit I don't understand the 5-year old mind. Especially one with a history of medical trauma and pragmatic/expressive speech delays. I know that there has been so much done 'to' him in his short  but full life. Control is important. It is essential for my little man to feel it given how much has been wrested from him with blood draws and IVs, tubes and therapies, schedules and dr visits, not to mention surgeries and hospitalizations and of course being hooked up several times a day to a tube and pump administering food directly to his stomach. My heart gets all achey and breaky thinking about how much control has been taken away from this little being when just being a little being means that you struggle with the whole autonomy and dependence thing to begin with.  I've heard more than my fair share of typical 5 year olds shout "I do it myself!!!"

So here we are trying to get Simon to this place of independence but to do it, the walls have to close in tighter than they ever have before. We are doing this to open up his world. It's a little mind-fuck for me, so it's even more so for him. Except that he's not quite as cerebral as I am (and I'm not even that cerebral to start with).

So my questions is...why can't the little f**ker understand when I say "Simon, when you finish your Frosted Mini Wheats, then we can go to the playroom/watch a video/go to the radio station/whatever the fuck you've identified to me that you want to do after we're done with breakfast/lunch/dinner/snack".

We go round and round with:
"No! Never!"
"That's fine but then we won't go to the play room."
"I want to go to the playroom!!!"
"Ok, that sounds great. We can go to the playroom as soon as you've finished your meh meh meh."
"I won't!"
...and repeat.

The team keeps telling me that it will sink it. He will get it.

But it's breaking my heart to watch the process. Simon will come out of this feeling more in control of his life and his world, but to watch him go through the process of understanding how to do that himself, to go through this transformation and become truly different than he's ever been, is heart breaking.

I know that most parents go through this at some point. Watching your child head off to college or move into their own place. Seeing them fall in love only to have it not work out and then realize that it wasn't right for a reason. Not getting that job, internship, award. Or even, have a few near fatal accidents and critically ill child and come through those moments with a greater appreciation for each breath this life affords.

Simon is five, not twenty-five. I would have liked one, if not two more decades, before having to watch him have to go through this. I think those two decades might better prepare him for the pain that often comes along with transformation. Maybe not...but c'mon, as the boy child of two mommies, he probably would have been pretty good at talking about his feelings and sharing. It's what we're known for.

Breakthrough can come at any time. I know I'm ready for it. I suspect that without having the words for it, the Little Man is too. (It's really hard to hear him talk in his sleep about being "so sad.")

Not to end on that note, Simon was given a superman cape today by Epic Eric, who runs the Turtle Talk program here as well as being a music therapist. After playing drums with him for a solid 45 minutes, Simon took off down the hall, arms raised, shouting,

 "I am the superhero for the whole world!"

Yup.



video

1 comment:

Nate's Mom @ Nate is Great said...

I hear you on the not connecting one + one. Nate potty trained for nine months. We were told that he'd connect the exclusive reward to the potty. NO DICE. Now he's nearing five and we're still in diapers....we're about to start round 2 over the winter break.... xxoo