Connection and Accomplishments

What have I accomplished today?

Trying to keep my hand elevated. Watching the redness return that my rheumatologist had said must be gone before I inject again, my cuticle slowly draw up away from my nail, more of it with each passing day, I was going to be honest about how I feel today.

I’d had a serious question on my mind earlier on when I lay down in agony after only managing to clean two rooms -a bathroom and a bedroom. And having already begun my AS exercises in excruciating pain by 6:13am, unable to continue.

It was off putting. All these “Merry Xmas” messages from people I wouldn’t expect them to come from. People who didn’t care to think that it would be possible that I was feeling anything but happy as I contemplated the question I allude to above. People who didn’t have the courtesy to ask, “Hey, what kind of a day is it for you? How’s the AS treating you today?”

“For me, is there even a difference between quality of life and quantity of life?” was what I asked myself as I soaked my throbbing finger. It’s usually a question asked when treatment impacts the dying patient even worse than the disease being treated, but knowing that the treatment is keeping them alive for a just a bit longer. But what about me? I have no real quality of life. I am in pain, I can’t use my hands, I can’t iron the mountains of ironing (Ironing Lady is shut, for obvious reasons.) I probably shouldn’t have even hung the many loads yesterday. I don’t have any AS treatment going on, so I can’t say if the impacts are affecting my quality of life.

It was going to be a post along those lines. But it won’t be. There’s no point.

Instead, I’ll post about how during quiet time, I went to my usually non-speaking girl’s room and just lay down next to her. She hugged my face, smiled, grinned…I took her leg and did some deep compressions around her joints, counting to ten as I moved up to the next joint. Then she said, “Eleven…” and looked at me out of the corner of one eye.

I said, “Twelve.” She continued onto 13..and so we took turns till she eventually shouted “Twenny!” Then she covered me with her sleep sack. As she lined her book and puzzle next to each other, she went to the wardrobe and took another puzzle out and lined it up next to the first puzzle, and said, “THREE!”

Unlike her bigger brother, there was no need to count one at a time. She just shouted the correct number. Then she added two more items and shouted, “Five!”

I hasten to add something I’ve seen in one person. Speech production isn’t a sign that autism is “going away” or that she’s “getting better” and soon all will be perfectly ‘normal.’ It shows that she’s growing up, much like when a baby goes from crawling to walking. It’s a developmental milestone. But given how she recently spent a few days saying NOTHING, it’s not a sign of ‘progress’ in the sense of knowing that tomorrow she will repeat the counting.

But it was LOVELY when she called me “Mommy shark” yesterday. I hope she does so again one day.

And that’s what I’ll end on. Loving my children, being a good example, wishing I could care for them properly, but thankful for our moments of connection.