There are days when this disease is manageable and I take it all in stride.
There are other days when it’s all too much and I just want it to go away.
Today is the second type of day.
I only have the letter left to write for our appeal. It’s done (in my head) but putting it down on paper makes the battle all too real.
I am fighting for a technology that would greatly improve Sáin’s quality of life and could even save her life. I shouldn’t have to fight for something so proven, so safe.
No one should have to justify on paper why their child’s life is worth protecting but that is what Premera is making me do. Shouldn't that fall under the "cruel and unusual punishment" part of the 8th amendment?
I will put the letter on paper tonight – somehow it’s easier to do at night and tomorrow I will submit the appeal and pray.
As for this evening – I think I will take the kids out to buy new Super Soakers. That ought to take our minds of the D word for a while!
There are days when this disease is manageable and I take it all in stride. There are other days when it’s all too much and I just want it to go away. 
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