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The three of them used to fit so easily into a picture. We could sit them side by side and still get the surrounding items in the picture if we wanted to.
They're getting bigger; they're getting taller; they're getting heavier; they're doing what kids do so naturally...they're growing.
While this is a welcomed phenomenon as we fully expected the children we had to grow, we didn't plan for one of them to require specialized equipment, let alone, specialized living arrangements.
We began our child rearing days with the idea that our current house would act as a stepping stone to a larger house that could accommodate the three children we planned on having. After Henry was born we were beginning to realize that maybe we might have to stay in this house, what with the economy the way it was heading and the fact that there was only one income paying the bills. We did, however, keep it in the backs of our minds that we might still move. Our third child was on her way and the prospect of finding a house with four bedrooms entered the scene again.
Fifteen months after Ella arrived the idea of moving was completely obliterated by SMA. When we received that diagnosis for Ella our worlds were thrown in so many directions, all pulling us with equal force.
One year has passed since the diagnosis. And as kids will do they have grown.
Normally this wouldn't present much concern. We have Ella in her own room and Ava and Henry share a room. If Ella didn't have SMA, Henry probably would've had the solo room and the girls would be sharing. Because of the equipment Ella needs the solo room must be hers.
The problem that faces us from the not too distant future is one of accessibility. While we can still carry Ella up and down the stairs, she is becoming heavier, longer, and most importantly, more fragile. As she grows she not only loses muscle function but her bones do not gain the density necessary to withstand normal pressure placed on them. Scoliosis has begun to set in and that causes pain, discomfort, and precarious situations while being moved. At some point she will have to be in her power chair for pretty much all her waking hours.
Our house, in its current state, will not be able to accommodate her needs.
We've always known our choices:
- Find a house that we can modify
- Build a whole new house
- Modify our current house
We're starting to have to think about this decision more seriously because we feel this is something that cannot wait until we "cross that bridge" to tackle; for by the time we get to that "bridge", we will need something in place for Ella.
We've had many people ask how they can donate money to help with the added expense associated with caring for Ella. In response, we have created a donation website that will allow anyone to make a monetary donation that will go towards Ella's immediate and long term needs.
Each day that we live with Ella we find out more about what it means to roll with the changes...as she grows we must constantly change how we parent. Knowing we have the love and support of so many people really helps us to be the best parents we can be to all three of our kids.
You may visit our donation site using the following link:
We've created a new "Helping Hands" page that also directs you to donation opportunities for SMA research as well as Ella's personal needs.
Thank you...
Michael, Lindsay, Ava, Henry & Ella
