I honestly don't know how I'm doing these days.
I've come to the realization that SMA is not a reality for me. Not even close.
I haven't been an emotional wreck lately. In fact, I haven't thought much about SMA at all. And it's intentional.
I've realized that I'm doing everything I can to create things to keep myself busy so that I don't have to think about the reality of this awful disease. And it's working.
One way I keep busy is by doing the many extra things that we have to do for Ella (make phone calls, research online, look into car/home modifications, etc.). It's weird, because I would have thought that these tasks would cause me to continuously think about SMA, but surprisingly, they don't.
But every now and then it starts to creep it's way in… I see Ella struggle with tasks that should be very simple for a 16-month-old. But then she'll move on to something else and forget about it. She's starting to have little tantrums like any other 1 1/2-year-old, so it's easy to pretend that her frustrations are typical.
I haven't allowed myself to stop and think about what's going on inside our baby's body.
I'm terrified to.
How in the world can a mother possibly go about her day-to-day activities knowing what SMA is doing to her sweet little baby?
I don't think I'm in denial. I know SMA is there, I'm just choosing not to think about it (emotionally, that is). I'm not sad or upset right now. I actually feel pretty numb.
The other day we were at the playground and there was a moment when Ella was sitting off to the side with me, watching Ava and Henry play. I could see (and feel) the longing in her heart to play with them, the way they play. I could almost feel her start to understand that something isn't right. But I quickly pushed it far away from my mind (and heart), because honestly, who would be able to recover from this simple, yet powerfully emotional experience?
Then this morning, we were driving in the car and Ella wanted so badly to play with this little toy camera that we have. The problem is, she's not strong enough to hold it. She can grasp it for a few seconds, then it slips from her weak fingers. I kept trying to give it back to her when we'd stop at red lights, but every time it would fall after a few very brief moments. I've never heard Ella cry out of frustration like she did this morning. She was sobbing, gasping for breaths in between. I almost lost it in the car with her. But once again, I forced myself to push the emotional aspect of it out of my mind.
While I know my feelings (and choices) are a defense mechanism, deep down I know that it's probably not the healthiest way to "deal" with what's going on in hopes of moving forward.
I feel like I look and act like I'm handling things pretty well, but who am I kidding?
I've barely even begun to let it in…
