I can remember sitting on our deck just a few days after we found out that Ella indeed had Spinal Muscular Atrophy. It felt temporary. It felt like if we worked hard enough it would go away. It seemed that we would only have to live with it for a short while then everything would get back to normal; it would be a distant memory. I remember thinking about having our daughter in a wheelchair. I had seen many kids with SMA in their wheelchairs as I researched the disease before the diagnosis confirmation. I wondered if our house would accommodate such a chair. Upon talking with Lindsay about it we thought not; simply because of the size of these power wheelchairs but more importantly the age of Ella. Having a toddler maneuver a 300+ lb. wheelchair in tight spaces and around tight corners is a recipe for banged up walls and broken corners!
Fortunately Ella uses a small 7 lb. manual wheelchair in our house. Through the generosity of a fundraiser we were able to lay down laminate wood flooring on the first floor to make the entire area accessible for her.
Ella eventually received her 311 lb. power wheelchair and uses it outside and in public areas. She is quite adept at using it and often elicits comments of amazement from people.
Our car is modified for the power chair through the generosity of a community of people and a non-for-profit organization. The chair is housed in the back of the van, charged and always ready to take Ella where she needs to go in this big world.
The kids are growing. In fact, someone recently told me that they were sure Ella was going to be the tallest of the three! They are growing but the space they use is not. Our first floor has now become a maze of equipment, toys, people, and the dog. Having three kids all about the same age, the place becomes a "wreck" rather quickly.
The end of the holiday season brought with it the blues...it also brought a renewed sense of a fresh start as we decided to fix up our basement and make it the kids' play room; completely accessible for Ella.
As I sit with the screen in front of me I feel the reality of SMA. It's not temporary. It's not something that will just "get better" or "go away". Often times it's hard to believe it's even there. As I bathe her I can see what it is doing to her physically...a pit resides deep in my stomach and my head shakes slightly as I silently sigh and close my eyes briefly, several times. Ella continues with her bath-time play and she quickly draws my attention away from the cruel realities of SMA. She has a way of doing that.
We place our youngest in bed after dressing her in her jammies, outfitting her with the braces (AFO's) she needs for sleeping and tending to her g-tube site. After stories we hook her up to the bipap, the pulsoximeter, and insert her tubing for the overnight feed. We lie with our children, speaking softly in their ears, rubbing their backs, holding their hands ("charging" with Ella), or simply lie in silence with them.
The night just begins and sleep comes over the house...not too long after and throughout the night, we are awaken by calls for turning, alarms that need silencing, or dreams that need quelling.
By the grace of God we are given another day to face.
SMA is still there.
