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Wheelerswife

Labor Day 2019

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!0 years ago on Labor Day, my husband Barry and I were at our customary Labor Day event – the (local) Jerry Lewis MDA Labor Day Telethon.  I realize that many people hated the telethons because (in their view) the telethon perpetuated destructive stereotypes.  My husband was never bothered by this – and he truly hoped that his participation in fundraising activities would continue to support clinics and research that would lead to a cure for his disease – Spinal Muscular Atrophy (SMA) and all the other diseases sponsored by the MDA as well.  The MDA no longer has a telethon on Labor Day.

 

Just 3 weeks later, Barry’s struggle with the effects of SMA ended when he died of respiratory failure at the age of 53.   Barry never saw that cure come, but in the last 10 years, there have been significant gains in finding treatments that can stave off the degenerative process occurring in genetically damaged anterior horn cells (spinal motor neurons) with an injectable spinal medication called Spinraza.  And…there is a new gene therapy that may make an even more significant impact on muscle function. 

 

So I sit here today…remembering that day 10 years ago when my medically fragile husband held onto hope that there would someday be a cure for the disease that had ruled a lot of the circumstances of his life – but did not rob him of his will to live and work and to make a difference in this world – and to love me with all of his being.

 

Maureen

Edited by Wheelerswife

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Hugs Maureen! It’s a bittersweet memory time for you. 

 

Today, I’m trying to keep a happy face. My youngest is turning 16 tomorrow and I’m having a gathering for her at our house. I know milestones tend to affect her so I’m trying to play to the positives and use distractive methods. Her birthday is always close to Labor Day as well as our wedding anniversary. I’ll probably go to the cemetery the morning of the day with some coffee and sit with him a bit. 

 

Labor Day is just not a day off, it seems...

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Yes labor day is a tough one , it would’ve been out 28 th wedding anniversary...ugh 

but I made sure it was filled with distractions and I also allowed myself a day to just feel whatever I needed to feel . Hugs to you all who found this weekend a little harder then most 

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