home

 

Rico is home.

Everyone tells us how great it must feel to have him home, but the reality is that everything before this was the easy part.  When he was in the hospital, we assumed there was progress. We knew things were improving.

But now?

Now our lives are not made of the same stuff. We are not pushing him to stretch his muscles or hold a pencil. We aren't worried if he can get his own arm through his shirt, we just do it for him. If he wants five helpings of ribs washed down with a Dr. Pepper, that's what we have for dinner, because I'll tell you this: according to 27 years of his independent research -  daily servings of antioxidant rich berries and a diet high in vitamin C - does not, in fact, seem to prevent cancer. So it's just straight up cheeseburgers and ice cream and we don't even feel bad about it.

He is awake and alert a lot in the morning and late afternoon, with a looong nap after lunch. Morning and late afternoon are the best times for phone calls. 

We celebrated Noah's birthday this week with Jason, Chelsea and the boys. Noah's friend Matthew joined us for dinner and a trip to Nickelodeon Universe - so the day was full-on chaos, just the way Noah likes it.

We still look for the good each day - Rico calls it his droplets - drops of beauty filling his bucket list. Yesterday it was sitting in the living room eating banana pudding and opening gifts with Noah, snuggling his grandkids, and laughing.

Completely tangent note - in case you're naive like I was - did you know that even with insurance/medicare/whatever you may have, some seizure medications are $500 for a 30 day supply? I didn't know this. I only found out when the pharmacist asked me if I wanted it. My response was "Hell no, I don't want any of this, but we need it - why would you ask?"

"Well," she says, pointing to the price tag, "This is the cost for four week's supply - $478.00"

"But we have insurance."

"Yeeeeaaah, that's with insurance. The cost without is more like $1,300."

"OK, I'm still going to buy this, we need it, but can I ask what happens to people who can't buy this? What if they needed it just to get through tonight without a seizure? Is there some kind of funding or program to help them?"

"Not really."

"What if they will literally die without it?"

She looked at me, bit her lip and held her hands out.

Just so you understand what that shrug meant - they die.

They just die.

I get that scientific innovations need funding - but what the actual  F? 

What is this $#!+ made of? I feel like people could be swallowing gold dust for roughly the same price. 

She asked me if any had any questions about the meds. I told her I had plenty, but probably none she could answer. I have questions for the universe and humanity and whomever thinks it's ok for a kid to die from a seizure for $1,200.