Right now I'm angry.
I'm finding that the first half of each week is becoming really hard.
We used to be motivated by her therapies (on Tuesdays). Now we're just discouraged.
Ella has been doing PT and OT every week through Early Intervention (EI) for a couple of months now (PT is Tuesday mornings, OT is Tuesday afternoons - with lunch and nap in between). In the beginning, we were learning about great skills to work on with her and tools (such as orthotics and sensory toys) to help her achieve goals more efficiently.
But it seems that for the past month or so, similar phrases have been coming out of our mouths (both Michael's and mine as well as Ella's therapists)...
"Sometimes she can have bad days."
"Maybe she's tired today."
"I wonder if she's getting new teeth."
"Perhaps she's not feeling well."
"Maybe the new wheelchair is using up too much of her strength."
"I don't understand why she can't do that anymore..."
And the excuses we've come up with go on and on and on.
And that's what they are. Excuses. The fact is, she can't do the things she used to be able to do a month ago.
That's why Dr. Silver wants Ella to come to the MDA Clinic this Monday (rather than wait until her original appointment in February).
That's why Ella's therapists are having a hard time coming up with exercises that will help her, that she can actually do. Yesterday her OT said she was going to have to think and get back to us regarding things we can do to try to improve her lost range of motion of her arms (and to let her know what the doctors say on Monday because she is open to anything they suggest).
That's why we're struggling so hard to decide whether or not we should try to come up with $4,000 to buy that little wheelchair, as she may not have the strength to use it for very long.
I find myself asking, "What's the point?"
So right now, I'm angry. Ella has SMA, Type 2. Type 2!! The progression of the disease shouldn't be so noticeable in such a short amount of time, should it?
I'm angry because I can't stand seeing Ella struggle and get more and more frustrated every single day because she can't do the things that her mind wants her to do. Her cry breaks my heart into more and more pieces every time.
I'm trying so hard to come to terms with the fact that Ella has this devastating disease, so that I can move forward in the grieving process. But it feels impossible to do so because it continues to get worse right in front of our very eyes. Every time I start to feel a little acceptance, it changes.
And not for the better.
