T-26?? (T stands for Target Day the World of Opportunity May Get Handed to Us) Musing 1

earthtargetSince I don’t know what day this month the results of the NNZ trial are coming out, I have to do a vague count down and just to keep my sanity I am going to assume it’s the very last day of the month. đŸ™‚

So, not dwelling on the past trial, I am going to look forward and hope.

Katelin and I are possibly facing a future completely different than I have envisioned for the last 19 years since she was diagnosed. On the one hand (the major dominate one) I can hope that she WILL have a longer life than I could have hoped for before. Against all odds, maybe just maybe she’ll be able to tell me “where it hurts” and a major complication can be averted. She may, with good fortune, tell me all the wonderful things she’s ever thought. She may be able to tell me what makes her sad, frightened, happy, what she wants to wear-all the mundane things people take for granted, that I never will, if she’s ever able to tell me.

But, on the other hand, I’m a bit scared. What if I’ve been feeding something she hates all these years. What if she doesn’t really like it when I snuggle with her, what if EVERYTHING changes??? There are quite a few things I like. I like playing games, and coloring and making her laugh with funny noises. I like snuggling with her at night and telling her The Three Little Pigs, using Fox as a stand-in Big Bad Wolf. We are in a comforting routine. I’m pretty confident in what she likes, how she likes things done, where she wants to go or not. But, facing a possible complete turning around of all that we know together is reallybedtime book scary.

I hope I do it right if that time comes. I hope that we have the chance to evolve into something more profound. But, I hope and hope that not EVERYTHING changes and she still wants to snuggle at night, but maybe, just maybe she’ll be the one telling the story.

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2 Responses to T-26?? (T stands for Target Day the World of Opportunity May Get Handed to Us) Musing 1

  1. emilyjosmom says:

    Hurry up and wait…I’ve just tried not to think about it for so long, just holding my breath that they would get enough participants and be able to finish this trial. I am pretty sure my girl will some day tell me that I am always “in her face” and touching her :). Hoping that soon we will be able to compare notes because our daughters are in the next stage of longer term testing!

  2. melelllan says:

    Ah, true, Hurry up and Wait…just like in the Military, ha ha. Yes, I wonder what Katelin will say is my most annoying thing I do, lol. Fingers are crossed!

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