Day 920 – Grayson’s Journey

Dear family and friends,

Should we ever get complacent about the subtle risks surrounding our care of Grayson, a day like today can remind us we must always be vigilant.

As we have mentioned in the past, when we put Grayson to bed at night, we always set a perimeter alarm just outside his bedroom door. This way if he crosses his bedroom threshold we are alerted, no matter where we are in the house – even in the middle of the night. Depending on his cycle he either gets up several times in the first hour or not at all. An hour or so later one of us opens his door, peeks in on him, covers him up if necessary, and resets the alarm. Up cycle or down cycle, once he is asleep he never gets up and has to be encouraged to wake up and get out of bed in the morning.

Early this morning, about two hours before we usually get Grayson up, Brant passed by Grayson's room and heard him giggle. Brant went back to the bedroom door and was shocked that Grayson was not in his bed. Then he heard Grayson giggle again. Way over in a corner, on the other side of the room, Grayson was standing in the semi-darkness with a comic book giggling away. This was a first – to be awake so early and to be out of bed.

Then came minor shock number two. Grayson's face, mustache, arms, pillow and sheets were smeared with dried blood – obviously from a significant nose bleed sometime during the night.

Just a nose bleed - no big deal for you or me but it reminded us that Grayson can't ask for help. Even at nearly 27 years old, he isn't able to take care of this routine medical situation for himself. He doesn't have mastery of his faculties enough to devise and execute the simplest response to a need – even if he registers that something is wrong. What if the nose bleed had been serious and hadn't stopped on its own? What if he were choking or having trouble breathing? What if … fill in the blank with any number of other scenarios. We don't dwell on those what ifs, all our days are numbered and we choose not to live in fear. But it does remind us to be vigilant. Over the last two and a half years I have found myself frequently standing in his doorway, peering into the darkness of his room. I watch to see if his chest rises and falls with his breathing – just as I did when he was an infant.

Whoever said that once you are a parent, you are always a parent sure got it right. I just never imagined it this way 27 years later.

Grateful to be someone's mom.

Peace,

Regina