I feel like I've lost my identity. I've lost the real "me".
Since Ella was diagnosed (almost a year ago), it seems that I have become someone other than Lindsay. I have become simply "a mother of a child with SMA."
It's hard to compete with that.
After all, being a mother of a child with SMA takes up a lot of time, energy, and strength. And with all of that, I feel like I've lost myself. I've forgotten who I am as a person. Most conversations revolve around SMA and Ella and how she's doing and how we're doing. I've been defined by this awful disease and had no control over it.
So I tried to take some control. Which led to weigh loss. And then I created a new definition for myself...a person who is thin. And I liked it. At first. But then obviously I started to lose control and spiraled into a full blown eating disorder.
Another new identity. Which I'd rather not have. So now in addition to SMA, the conversations are also about this new disease...Ed.
What Michael and I are working on now, is bringing some of our old interests back to life. We're going out on dates again, which has been amazing. We've gotten to the point where we feel comfortable leaving Ella with a few others who are familiar with her care, so we are able to get out for a couple hours at a time.
We realize that we need some individual time as well. I'm hoping to start walking again, as that used to be an activity that I looked forward to every evening. As soon as I get the "ok" from my dietitian, I'll resume my daily strolls.
I am also in the process of finding an outside therapist to help me with my eating disorder struggles, as I still have a ways to go. It's hard to let go of the one coping mechanism that provided such a distraction from SMA. I'm hoping that the therapy sessions will also help me to learn new coping skills.
The bottom line is, I need to find the old me. I know she's in there somewhere.
I know a big part of me has changed since Ella's diagnosis. I've become tougher. I don't have as much patience. I have a new appreciation for things in life. And there is a new darker side to me that didn't exist before (or maybe it did, but it never reached the surface until recently).
Yes, I understand that SMA is a huge part of our life and always will be. But it's not our entire life. It can't be.
I'm still Lindsay.
And I need to reach in and pull out some of those qualities that make me who I am. Because I miss her.
I just want to be me.
