I've sat down to write a blog several times in the past few days. Like everything else in my life, it too, has become more difficult.
It’s like I am running in slow motion while everyone and everything around me is going at high speeds. Each time I think that I feel ok I get blind-sided by the awfulness of SMA. It’s hard to describe but it’s like a wave flooding my mind, weighing it down and drowning out every other aspect of life. The life I lead and must face in the future seems blurry, water-logged, and out of focus. Nothing seems real anymore.
When we first learned of Ella’s disease, we made a promise to one another, Lindsay and I did. A promise to do everything we can to keep her alive until they find treatments and/or a cure. Each day that passes seems to grow longer and the tasks more difficult. Not only does the progression of SMA affect the physical well being of those who have it, the progression wears away at the family as well. It digs its claws into the fabric of everyday life and challenges us to move forward with the things we once took for granted as we raise our kids..
- eating, drinking & playing with them,
- toileting & bathing them
- moving with them
- cleaning with them and after them
- driving them
- watching TV with them
- sleeping when we can
- socializing with our friends/families
- working
- reading stories to them
- dressing them, exercising with them, brushing their teeth
- cooking for them
- talking on the phone & e-mailing when we get the chance;
...to name just a few.
All of these things have now taken on a new meaning.
All of these things have now taken on a new meaning.
Doing these things now takes more time, patience, energy, and forethought. It’s draining. Do these things we must, and I can find no better reason to continue doing them than my family of Lindsay, Ava, Henry, & Ella. Each day I am drawn closer to them and wrapped more lovingly around them.
As I witness what SMA does to a person I also experience the deep, penetrating love for that same person.
I want so badly to fix it…
