Wednesday, April 14, 2010

Hey Masto? Kindly Fuck Off.

Masto has been sort of a non-issue in our house for a few months now, which I credit largely to cool weather and careful food choices for Rohan.

But nothing is perfect and the extra challenge with a disease that is there from birth is that it manifests itself in ways we can't always detect. And may I be honest and just admit right here and now that this pisses me off?? Because not only is it not really fair to him to have been born with this fate, but it's also not fair to him to suffer and not be able to tell us why and how.

So after a few months with no need to medicate Rohan, I was starting to feel like maybe I had overblown the whole damn thing. I do this: I freak a bit about something (or a lot, in this case) and then in retrospect I laugh and duck my head in embarassment because I can see (hindsight is amazing, no?) that perhaps my knee jerk reaction aimed too high. I started to think that maybe all those worries and stresses and sorrows I felt for the adjustments we'd have to make in his life were really just me being in Mommy Mode and overthinking things. Most of the worries involved the little things, because the little things become the big things in labors of love. As a mom I worry what will happen if he ever needs surgery given he may not tolerate anesthetics well or even at all. But I also worry how we will answer the questions about "What happened to his arm?" and whether he will have trouble playing sports and even if he will ever be able to enjoy a carton of fresh, plump blueberries in the middle of a summer afternoon.

But, like I said, he was doing really well. It has not been uncommon in the months since he was diagnosed at 5 weeks for us to need to medicate him at least once or twice a month. But this weekend brought us a perfect storm of happenings in his little body, primarily a fever and 4 molars working their way through the gums. And with all that not feeling good happening, I really didn't overthink it when I picked him up early from daycare yesterday only to battle his mood the entire evening while he fought his midday nap, his late day nap, and his bedtime. Finally we gave him some Tylenol for the lingering raised body temperature (it was barely elevated at this point) and the teething, and my husband was able to get him to sleep.

Fast forward to this evening, when he fit and fussed and cried and argued with my every attempt to get him to go to bed. If I could read his mind, I'm sure his thoughts would have read:

Pick me up! NO NO NO...Put me down!!! I need water! Get that sippy cup away from me right now! I am Highly Offended! I need a hug. HUG ME! Pick me UP! I'm so tired. Soooooo tired. Hold me. Don't hold me like that!! NO! Not like that!!! Ok, yes, like that. Where is my BOP?!?!?!That's better. Now put me down. No, down. On the FLOOR! Not in my crib. I said NOT IN MY CRIB! Yes, in your arms. No, I am not going to sleep. Take me downstairs. Now hold and rock me. NO no NOT sit while you hold me. Stand. I said Stand!!! Why are you setting me down?!?!? I love you. Go away.

After half a dose of Tylenol didn't seem to take the teething edge off, I erecognized the telltale signs that maybe it wasn't his teeth bothering him. He was hot and sweaty. He seemed uncomfortable. He was clenching his fists and curling into his belly and manically kicking his legs.

But you know what he was not doing? He was not talking, and telling me how he felt. And damn if I don't always doubt my Mama instincts. So I tried to rock and cuddle and coo and love...all to no avail. And finally I looked into his extremely red and tired eyes and saw that this was not working.

0.10 mL of Doxepin, a few verses of his Mama singing 'Piano Man', and some butt pats, and he was sound asleep.

So I guess we're not free of the Masto grasp just yet. It makes me sad knowing this summer we're probably in for a battle like we didn't have to face last summer, since he's going to want to be outside playing more and heat is a top trigger. But I know we'll make it through. Now I just wish he could learn how to tell me what he's feeling. The guessing game sucks.

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