This weekend was filled with quite a bit of sadness. Holden slept all but a couple of hours on Saturday and Sunday. We can tell he wants to feel better when he asks for things that make him feel normal, but he's just too tired and weak to enjoy anything. He asked for his McDonalds several times, but fell back asleep each time, before I could bring it home. He wanted cupcakes tonight, but fell asleep before they arrived.
He had a few special moments where we could see and hear the Holden we know best. Earlier tonight, when I was laying next to him he looked at me and called me a "big shit-head." He smiled and we joked around for 5 minutes or so. It felt good, but it didn't last long enough.
He's finally enjoying some cuddle time in the rocking chair that he asked us to bring into the family room. It's the chair that Alex used to nurse him in as a baby. The gray rocking chair has been in the basement and he hasn't mentioned it for over 2 years, but last weekend, to our surprise, he asked for it, so of course we brought it up. Since he started sleeping on the family room floor, we haven't been able to cuddle him like we could when he slept in our bed. This weekend, and for a good chunk of today, he wanted Alex to hold him on the chair. Lucky her. This made her so happy. So far, Holden has only wanted Alex to hold him, but sooner or later, he will let me have some of that precious time.
It hit me this weekend that I've spent two and a half years worrying about this stage of Holden's disease. Even on his best days, the dark cloud of "worry" was omnipresent. If I could do it over, I would live everyday as if a miracle was being granted and enjoy every moment without this fear. We lived that way some days, especially over the last year, but not all. It's hard not to worry, but I shed many tears over the last two years, almost always alone when nobody was watching, and many of them were strangely on Holden's better days. Had I known then, what I know now, I would have saved them all, for now. These are our darkest days, and it's hard to see any light. Already I am deeply missing our "good old days" and there is nothing that can ease this pain right now. What makes it worse is that we were living the "good old days" just a couple of weeks ago.