I've been wanting to write a blog post for the past few days, but honestly, I haven't had the strength. I've started writing a couple times and then had to stop. Usually writing out my thoughts helps me feel better, but I think I was in such a dark place that it didn't matter.
A dark place.
I visit there quite often these days. Each time is a little darker than the last. I keep thinking, "Why isn't this getting easier? It's supposed to get easier as time goes on!"
But I guess it doesn't work that way with SMA (or any other progressive disease for that matter).
Right after Ella was diagnosed, I knew it would take some time to get used to the idea that she has this disease. What I didn't know (or realize at the time) is that we'd be watching her get worse. Day after day. Week after week. Month after month.
It's been over two months since Ella was diagnosed. The decrease in her abilities since then is incomprehensible.
She saw her dietician yesterday and Ella has lost weight in the past month. Not much, but enough to prove that she sure isn't gaining weight.
At aqua therapy today, her PT told us that she's noticing that Ella's fingers are becoming hyperextended. I asked what the implications were, as I had no idea, and she told me it means that Ella's hands are getting weak.
I just don't know how much more of this I can take. We thought we had time. Time for the researches to find a cure. But now I'm not so sure. We have no idea what we will be dealing with because it changes so quickly.
Up until this past weekend, I've been able to prevent myself from becoming completely emotionally consumed with what's going on. I'd feel myself going to that dark place, and I'd take every ounce of strength I had to push through the day, knowing that if I didn't, if I let myself sink into that place, I might not be able to get out.
On Tuesday, I couldn't get out. I had been sinking since Saturday, and after a few days, I was unable force myself to keep going. I've never felt anything like it before in my life.
I wish I could cry. Crying is so much easier. Instead, I have this enormous lump in my throat and a dark cloud surrounding me, following me everywhere I go. Every so often, the clouds part and a little ray of sunshine comes in, but it's always short lived. And those rays of sunshine are becoming few and far between. No, I take that back, the rays of sunshine are always there, they're just having a harder time getting through the dark clouds.
I was talking to Michael about it and he insightfully told me that I've been pushing the reality of SMA away, any time it tried to get near. I would force myself to keep busy, which I thought was helping, when in reality, I was just avoiding my feelings. He told me that my feelings became too strong and I couldn't fight them any more. But I NEED to let the feelings in, even when they're bad. It's OKAY to feel sad. Trying to avoid those feelings is only going to make it harder the next time I start going to that dark place. Avoiding my true feelings will make it impossible to move forward.
And I think he's right. I hate it when he's right.
I don't know what I would do without Michael. I've never known anyone in my life to be so in-tune with his (and others') feelings. We've heard so many stories about how having a child with special needs (especially a terminal disease) can rip families apart. Michael and I have only gotten closer. He is my rock and there is no way I'd survive this without him.
This road has only just begun. It's going to continue to get worse. I can only hope and pray that someday it will start to get better. But until then, I have to stop fighting my feelings. I have to allow myself to experience them full-force if I ever want to be able to come to terms with this awful disease. And I have to stop hiding. I'm always afraid to put myself out there, making myself vulnerable. Letting others see me weak.
But as awkward as it is, and as much as I hate being such a downer (and want people to think that I'm doing great), putting it out there really helps.
