My burning question as I woke up. Mazie was singing a nonsense song about school, very happy with her new TSS support at school. I began my day by loading the dishwasher, cleaning the table, putting in a load of laundry as I got the Gremlins off to school…
Then the spin cycle began… Benjamin runs down the steps, gives me a little hug, “Good mornung, Muuummmy.” And makes a beeline for the machine and places both hands, arms extended onto the machine to feel the spin, then, shuts it off. My mind stops, rewinds, and begins another day in the Ben zone.
We had an evaluation on Tuesday. He screamed the entire visit. I had to put on his vest to prevent him escaping the exam room. He kicked over the Legos ® and screamed “NO” when anyone said anything to him. He was not in his element to be sure.
We had a BSC but had been put off forever for his TSS. Amazing, the next day, we got a TSS!! And so did Mazie!! Whoo hoo. But in the same breath, Benjamin is losing his Access card so I have to appeal the decision.
“Imaashehse” Ben just said to me. But he looked me in the eye!! Back to the question, “will I be OK if things stay exactly as they are right now?” Ben has had vERY LITTLE improvement over the past few months. Mazie has had tremendous improvement. Something breaks inside when you look at this little boy who looks so normal, but acts far outside the normal range. Can I see myself when he is 10 in the store as he throws a fit? How about when he is 20?
When my family sang together, there was a family that faithfully came to all the local concerts. They were Bill and Phyllis. They had an adult daughter in age named Nancy, who was probably about 5 or so in developmental age. She LOVED to hug us all. She clapped and loved music. I often wondered why they came to EVERY concert. The songs were almost all the same over a period of a few months. I get it…Nancy enjoyed it , so they came.
The bending without breaking that happens when you have a special one. There is a lot of bending, accommodating, and loss of choices for the parents. But if you have HOPE that is easy. But when HOPE is gone, then the reason must be LOVE; the unconditional love that you have for your child. As I woke up with that question, that was one of the answers.
But the other is deeper. I do it because I love the Savior. If I cannot do it for me or for Ben, I do it for HIM. And he is the God who sees. He sees me as I try to hold it together, as I give up even more of myself to serve this little buddy who Needs the environment to move for him. But I do mourn Me… that is my humanity.