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I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.
Ronan has Tay-Sachs disease, a rare genetic disorder that causes the body to slowly regress into a vegetative state. He's expected to die before his 3rd birthday. Emily's strength is something I can't even begin to fathom.
Everyone needs to take the time to read this, you can find the entire piece at The New York Times. To read more of Emily words, you can find her blog at Little Seal.
1 comment:
oh wow. that was beautiful. and just so sad. she's incredible.
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