Good days, bad days

Some days are going to be harder than others. I"m going to have to accept that, and so are people around me. 

After the flurry of panic in the emergency part of this situation, we are easing uncomfortably into some type of routine. After my hysterical moment Friday night, I went to bed (I didn't post to Facebook, but did write up as an entry. It was tough to write and will be tough to read.) I was supposed to drive Corey to take his SAT the next morning real early, but I woke up startled an hour too late, and rushed into Corey's room. We stared at each other in disbelief, and I expected him to be upset, but instead he hugged ME to give me comfort and said "It's okay Mom, I can take it in June." When did he become so like his dad, and I didn't even realize it?

With the morning test taking off the table, I suggested we make a trip to Target to pick up household supplies. Friends and my parents have been really kind and generous with providing food in the house, but still, we needed to re-stock, and up until now I have been circling between hospital and work, mostly just coming home to sleep. I also wanted to pick up some comfortable clothes for Jon. Since he is the PT/OT/Speech unit, he can be out of hospital gowns.

I was odd to go to out on an errand with the boys. Since they are so independent now, mostly Jon and I run errands individually, or sometimes as a pair. The boys rarely join us, unless we are also including in dinner or lunch. I miss Jon being with us all the time, but it actually felt pretty good to be with the boys, talking and having them make choices with me. Each of us is exactly aware of what this feels like. They are cracked open too. 

Although I originally planned to give myself a break and not go to the hospital, driving around with clothes for Jon made me antsy, so I decided to go in the early afternoon. The boys wanted to come too, so we picked up sandwiches and headed to the hospital. Jon was drowsy, but chuckled a little to see we had brought him a Lego figure building kit of Chirrut Imwe, the Donnie Yen character from Star Wars. Jon is a big Kung fu movies fan, so yes, we probably would have bought this in any case, motor skills and dexterity practice aside!

The new routine in therapy is exhausting. It takes a lot of neural processing to lift, move, turn, anything for activities. So simple tasks like practicing taking stairs and walking for Jon are the equivalent of taking physics exams for me. Exhausting. This is his new routine, for three hours a day, for however long it takes.

It's hard to be at the beginning of this process, but I have to remind myself that he could hardly bring a spoon from bowl to mouth a week ago. And now we can take that action for granted. 

So I hope all of us—Jon, me, the boys—can refer back to this point in time, to remind ourselves of the progress that he's made, that we've all made, when we get frustrated or anxious (or have meltdowns in the car) in the days ahead.

Love you like crazy, Jon, you're doing so great. We love you so much and we're so proud of you honey!

Min