Saturday, October 26, 2013


We dropped off my daughter's blood test today and we're doing a 24 hour urine test - the same one that diagnosed me with MCAD.

I'm so torn. I want to have answers, finally, to what is hurting my baby girl. But I don't want it to be THIS answer. I want a different one. I want an answer that has a super pill that will cure her pain, or a magic medical wand that can be waved and make it all better.

I don't want an answer that will mean a challenging and difficult life. But that may be what I get, what SHE gets.

She knows it, too, and I know it scares her. She can't help but know, because she's being tested for what I have, and she sees what I go through and knows this could be her future IF she has MCAD as well.  I don't want her to have this; I don't want this for her.

How horrible is it that while I say that, I still have part of me desperately hoping that this is the answer, because she's so defeated right now. She's in so much pain that all of us just want AN answer, any answer, as much as we don't want the wrong answer.

I vacillate between looking at her symptoms and thinking - this sounds SO much like this disease - and thinking - this is so rare, there's no way it could be this disease.  How will I look back at this moment, when deep down, the one thing I'm NOT thinking is: these symptoms don't match at all.

Because this disorder was so rare that it couldn't really be my disease either, I was just hoping to talk to a doctor who tested for this, 'just in case.' I asked to be tested for Celiac Disease 'just in case,' too. I think perhaps I should know better by now. My 'just in cases' tend to come to fruition.

I don't want my daughter's 'just in case' to be right, though. Please, let this test show us something, give us a direction to look in, give us hope that we can figure out what's going on...but please be something else.

I know we don't have a say in this, that my hoping and worrying are really rather pointless in the end, but I keep thinking of that touching article, 'Welcome to Holland.' This test feels like that moment for my daughter. 'You were expecting to spend the rest of your life in Italy, sweetie; Welcome to Holland!'  And I know that if this happens, if we find out that she's destined to spend her life in Holland, as it were, then "the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."

I will grieve for her every day for the rest of my damn life, and feel guilty that my freaking genes gave her this, and try not to let her know because I want her to ENJOY Holland as much as she can. We can cry together over missing Italy, and then I am going to encourage her to find out everything wonderful about Holland that there is to discover, even if I'm periodically hiding in the bathroom to bawl that I can never make Italy possible for her.

Except of course...maybe she'll get Italy. The tests will be negative, or they'll find some little known parasite that has an easy fix and bam, it's done. She's all better. I have the dream held close, just as close as my fear that this 'just in case' test is as positive as my own. Neither of these two states of mind is winning right now; they are constantly battling so I'm in a state of unending tension until it's resolved.

I hope we get the tests back soon.

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