Every day, he makes me laugh. A dozen times a day he says something to make me laugh and I think…I don’t want to forget this, I should blog this. Yet, I’m too busy soaking up his awesomeness…filling up my tank…just in case. Just in case…
We haven’t started titrating down yet. We may be the last…our appointment was on Friday but I had to cancel it. When people ask, and I tell them…I get this look of pity. Even my husband gently asked me what I thought was going to happen. Nothing. I get it. Nothing will stop this, nothing.
But…
It is asking too much. That we take him from school early, when all the fun end of the year stuff is happening. That Eric’s sister has to give up hours of her very little free time/time off to come and sit with Grampy. Grampy who is home from rehab, but who needs lots of attention. It was asking too much.
And now that I sit here, pondering making another appointment…it is still asking too much.
To ask me to go there and hand back the medication that has opened up the world to my boy, the medication that has taken that sparkle in his eye and brought it forth so it can be shared with the world, the medication that has enabled him to learn more easily…it is asking too damn much.
I feel so helpless and furious and sad…it’s all too much…I have a mother’s heart, one that is immeasurably strong in many ways but also so, so fragile. Asking me to break my own heart. It’s just too much.
<3 :-(
You and Holly need to contact Oprah and Ellen. You both articulate your feelings and the hell that is occurring so well.
RT @BasicallyFX: Every day…: http://t.co/mX3rm5GR5y #fragileX #stx209 @Roche
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It is too much to ask!! http://t.co/32I3stXdPT
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Heartbreaking…
I already contacted Oprah! I also gave her links to Holly and Melissa’s blog. It’s kind of nuts, but it doesn’t hurt.
RT @STX209_Stories: It is too much to ask…”@BasicallyFX: Every day…: http://t.co/vJphzGZ0Rj #fragileX #stx209 @Roche”
🙁
RT @BasicallyFX: Every day…: http://t.co/mX3rm5GR5y #fragileX #stx209 @Roche
RT @BasicallyFX: Every day…: http://t.co/mX3rm5GR5y #fragileX #stx209 @Roche