I'm driving home, the start of a long, 3+ hour journey, and he is in the passenger seat trying to eat the breakfast I just bought him from a drive-through. His hands aren't working well because of the weakness, and he struggles to bring the breakfast sandwich to his lips. I watch him from the corner of my eye, and though I'm wearing sunglasses, I fight like hell to keep the tears that have welled up in my eyes from streaming down my face. I can't add to the way he already feels.
******
Last night I cried so hard that I thought I'd be sick. I worried the neighbors would hear me through the cracks in the window. I mean, I was wailing. I wrote in my paper journal that I didn't want to wake up today. I couldn't do anything about that because a) I was chicken and b) I couldn't bear for any of my kids to think it was because of them.
Nobody was home but me and the dog, and I'd closed the door with her in the hall. I needed to be Alone alone.
Earlier that evening, our scoutmaster had called me. Aaron was not doing well at summer camp, where I'd dropped him off the day before. He had a seizure when we got there, and scraped up his knee (in addition to dealing with an already-sprained ankle). But he bravely wanted to try. His summer has been nothing but seizures and hospitals and doctors so far. We both wanted him to have fun and hoped so hard I thought my heart would break. So I let him stay, knowing I might get a call to retrieve him.
Our scoutmaster let Aaron's big brother (who was also at camp with him) borrow a car so that he could bring Aaron to me halfway, so that I wouldn't have to make the whole 5 hour drive up there. When he arrived at our meeting point and parked, I helped Aaron out of the car. He could barely walk. The entire ride home, even after a rescue med, his right hand was twitching. He was clearly miserable.
I'm at my wit's end, and desperate. I know we go in two weeks to get surgery recommendations from the doctors in Colorado, but it feels so far away. Treatment feels even further, especially when school starts in 1 month and I have no idea what to do about it. I am nearly certain he won't want to try regular school again but I cannot do online school again - my work is just too much now.
I feel so tired and yet, I can't rest because I am also so incredibly anxious.
Because today I watched my child struggle mightily just to feed himself a damn egg sandwich.
