The reality of SMA never really escapes us.
The night before the FSMA Conference ended, a young child passed away (he and his family were at the conference). We were told the devastating news just moments before the closing workshop, which was to be about the research being conducted to find treatments and hopefully a cure for this disease.
Our thoughts and prayers go out to this family...
Our thoughts and prayers go out to this family...
The reality of SMA never really escapes us.
The FSMA Conference was an incredible experience, to say the least. It provided us the opportunity to meet other families who have, and are, experiencing the same life circumstances that we are experiencing. It provided an unprecedented opportunity for Ava, Henry, and Ella to grow.
The reality of SMA never really escapes us.
Before the Conference, Ella did not particulary like using her power wheelchair. While at the conference it was her only mode of transportation. Upon seeing so many other people in power chairs she quickly became attached to hers. Her skills, confidence, and self-esteem flourished as she was happier in this setting than we have ever seen her before.
The reality of SMA never really escapes us.
Ava and Henry were surrounded by kids with SMA as well as unaffected kids. They spent hours playing, talking, and interacting with kids that are going through the same things they are going through. They found comfort and a new appreciation for their position in the family.
The reality of SMA never really escapes us.
Lindsay and I learned much about SMA and ways we can better care for Ella. And while the reality of SMA never really escapes us...we have a rebirth of hope, a new found appreciation for our youngest child as well as our older two, and a rekindled sense of optimism.
We stepped into a world filled with SMA and all that it entails...lived amongst others, if only for a short while, who are feeling the same way we are; looked at our daughter Ella with new eyes--making the reality of SMA seem small, if not distant. And while we know the ultimate reality of SMA still lurks--it comes up against the force of those passed, those now present, and those who are to come. It comes up against the loving force of family, friends and strangers...all seeking to give people affected by SMA a chance.
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Disneyland provided an added experience that will go unmatched. Look soon, for a more detailed account of the entire trip complete with pictures...!
