This HAS to Get Easier (by Lindsay)

Every day I think to myself, "This HAS to get easier."

But it hasn't. In fact, it seems to continue to get harder.

Typically, as kids get older they become more independent.  But not Ella.  

As Ella gets older, her mind wants to do more. But she's also getting bigger so her body is becoming harder to move.

If we're at a place where she can't use her little wheelchair, we're finding that she's getting very difficult to hold for longer than 5 to 10 minutes. And we've already started to have a hard time supporting her the way she needs to be supported. There have been several occasions recently when Michael and I have passed her to the other person and her head falls back unintentionally. We're usually very good about supporting her weak body, but it continues to get weaker (as she continues to get heavier).

It's hard for her to play with anything for more than a few minutes without help. If she wants to play with something else, she needs someone to get it for her. Even when playing with things right in front of her, many times she can't reach all of the parts.

Michael and I constantly find ourselves letting out a huge sigh, followed by an eye roll, whenever we attempt to sit on the couch. Because as soon as we hit the couch, Ella needs something. Water. Her paci. A toy. Something that fell to the ground. Something she can't reach. Her wheelchair gets stuck to the point that she can't maneuver herself out. And the list goes on, and on, and on.

I used to take the kids to all sorts of places during the week... museums, "moon bounce" places, friends houses, etc. But now, it's so much harder. I always have to think, will Ella be able to do anything there? Will she be able to use her wheelchair? Is there carpet or hard floors? Will I be able to sit her on the floor to play with things? And what about the other two? Will Ava and Henry be able to explore without going out of my line of sight while I help Ella with whatever she is doing? It has almost become not worth it.

This SMA has made her completely dependent on us. Like a newborn. No, more so than a newborn. Because when she was little, she could lie in one place and be perfectly content watching things going on around her or playing with dangling toys. But now, her mind wants more than that. It NEEDS more than that.

And her only means is through us. She will ALWAYS need us to do these simple things for her. And we have to remember that we still have two other children who also need our love and care. Two children who don't always understand that Ella will naturally receive more attention with things than they do, simply because she can't do things the way they do.

So I guess in that respect, this will never get easier. And I have to learn to accept that.