Living with Spinal Muscular Atrophy is more than a full time job. There is so much involved physically, mentally, emotionally and spiritually. It truly is 24/7…I even dream about it (during the nights where we actually get more than a few hours of sleep in one stretch).
I don't think there are any words that I can think of to describe the challenge. Words that would describe the intense difficulty of living with this disease. And it only continues to get harder.
From the physical challenge of actually caring for Ella (including helping her with almost every single task she wants to do), to the emotional challenges of feeling the sadness of what she is unable to do physically and the fear of losing her. It's a lot to feel.
But lately, I've been letting SMA take over my life. And I'm not okay with that. Yes, it is a HUGE part of our life (and will be forever). But it's not our ENTIRE life. It can't be.
We still have our other children, Ava and Henry. We still have our marriage. We still have our families, friends and other interests outside of SMA.
But sometimes it's hard to draw the line between some of these things. Nearly impossible is more like it.
But if SMA is all we ever think about…if it's all we ever LIVE…then we're going to have a really hard time truly living.
It's going to take time, I know.
Sometimes it's hard to adjust because Ella's status keeps changing. Many times I feel that when I finally start accepting and feeling somewhat confident with where Ella is physically, she gets worse. And then I have to start over. And it continues to happen. And will continue to happen.
At some point I will hopefully be better at accepting these changes. Or at least be better at handling them emotionally.
But I CAN'T let it be who I AM.
I am not SMA. WE are not SMA. ELLA is not SMA.
