Day 585 – Grayson’s Journey

Dear family and friends,

Keep Watch.

Today Grayson and I spent many hours together that looked nearly identical to hours on other days. The routines of waking, washing, brushing, dressing, room straightening, meal preparation, eating, and clean up are intentionally quite similar. The mantra of repetition, repetition, repetition plays constantly in the background of our lives now.

The days are also, as you can imagine in our family, broken up with lots of laughter and affection. Today was no different as we "chatted" and "sang" and worked. This afternoon while Grayson and I drove to Costco, I had him practice shouting. His voice is now quite soft so this was an exercise in breathing deeply and supporting his tone better. We walked a great deal and had plenty of up and down stairs practice. Grayson is so woven into the routine of our lives that we are firmly settling into "new normal".

This new normal is not, however, without a heightened sense of vigilance. Grayson must constantly be monitored for his safety. For example, we cut food into small pieces since he has little or no impulse control. He invariably loads his mouth to overfull and risks choking. Even turning away to engage another family member in conversation is a little unsettling to me. I have no confidence that if he took a misstep on a stair he would be able to catch himself. We don't leave medications in sight, leave him by a hot stove, or serve him overly hot food. Even when we remind him to check the temperature of his food, he tests the first bite and then starts shoving in the food anyway – immediately followed by the wide-eyed look of panic that his mouth is burning.

Just as with a toddler, we can't turn our backs. Yet there are times when it is easy to look at this nearly 26 year old and make false assumptions. Today I had a moment of panic.

As I mentioned Grayson and I were at Costco. We pushed an overloaded cart of jumbo sized everything to the van and managed to load it all in the back. I walked Grayson to the passenger side door, saw him safely inside, strapped in his seat belt with the windows down. I told him to stay put, walked the mere 20 feet to the cart return and walked back to the van (which was clearly in my sight). When I opened the van door, my heart froze. There was Grayson with an opened package of a sample that had been handed to him while we walked around Costco. I knew it had been dropped into the bag he always carries whenever we go out. This was not a chocolate, a cup of chips or an energy bar sample. No, this was an automatic dishwasher detergent Powerball tablet – and here it was completely unwrapped like an after dinner mint, crumbling in his hands. How many samples were in the package? "DO NOT ingest. DO NOT get in eyes. Call Poison Control Center immediately." After a quick, thorough check of his mouth, face, hands and the packaging, and a second and third check of his mouth, I started to breathe again. All four tablets were still there. I cleaned the residue from hands and said a prayer of thanks. Keep Watch has additional meanings in our family these days.

"Therefore keep watch, because you do not know on what day your Lord will come." Matthew 24:42

Grace and peace (and vigilance) to each of you,

Regina