That's how I feel most of the time.
A constant knot of unease in my stomach.
The kind of sick you feel when you can't stop worrying about the future, both near and far.
The kind of sick that prevents you from falling asleep at night.
The kind of sick that causes you to lose more than 30 pounds in a matter of months without trying.
Now that the reality of SMA is starting to sink in, we're faced with not only the innumerable medical hardships Ella will face as well as the thought of losing her, but we're beginning to feel the stress of drastically changing our life as we know it to meet her needs.
Among other things, a wheelchair...
Not just any wheelchair, but a 300 pound power wheelchair. It will be an incredible piece of equipment for Ella. We can't wait to see the joy in her face the first time she tries it.
Her physical therapist has stressed to us how important it is for Ella to be able to move around independently, both for her emotional and cognitive development. Just because she can't walk (and won't be able to), doesn't mean she shouldn't be able to get around like every other 1 1/2-year-old can. She needs to be able to explore her environment. She needs to have as much independence as she possibly can. Her PT would like her in a power wheelchair between the age of 18 months and 2 years old.
Easy enough, right?
A 300 pound wheelchair. Not something you can lift in and out of the car. Not something you can lift up the two small steps into our house. Not something that will easily maneuver around the tight corners of our first floor. Not something that will fit in any bathroom in our house. Not something that will be able to go to the second floor or the basement.
That's ok, she's still a baby, we can just carry her around for a couple more years. But as time goes by, we're finding that it's becoming harder and harder to carry her for any long stretch of time.
Because of her lack of muscle tone, she can't help us while we're carrying her. When you pick her up, her arms can't push down to help, making her body slide right through your grasp if you're not applying enough force. When you try to hold her, she can't wrap her legs around your waist to help hold on, instead, they just dangle. Her trunk muscles aren't strong enough to hold herself upright all the time, so we're using our free hand placed behind her to catch her if she starts falling backward.
It's not the same as carrying a healthy toddler.
We're also finding that when we go places, there's not a whole lot for Ella to do. She basically has two options: be carried or sit on the floor in one place.
Ella has figured out that being put down on the floor means she's stuck there. And believe me, it is one of the hardest things in the world to see your 15-month-old daughter throw her head on the floor, crying in frustration, because she can't move where she wants to. It kills me every time.
So we can't wait for her to get a wheelchair. It will be the most wonderful thing for her.
But our car and house will not work for Ella in a power wheelchair.
I wonder if my stomach will ever feel the same again.
