I would not last very long if I were a moth. I would see the pretty blue light in the distance, do a few fly-bys and then I’d just have to touch it. ZAP! Fried bug.
I have a tendency to do just that, I become attracted to (or obsessed with) a topic or issue and then throw myself into it so much that I end up a little crispy around the edges.
Our Prader-Willi support group met for the first time last Saturday. The meeting went really well, it lasted about three hours and there were four other families besides us with children ranging in age from 14 months to 25 years. Since the meeting I have been contacted by two other families, plus there were two other families who RSVP’d but didn’t make it on Saturday. The endocrinology clinic at Children’s Hospital sent out our flyers last week thanks to the quick thinking of the local Pfizer rep. I spent a couple of hours tonight tracking down email addresses for the special education coordinators at the local county offices of education and the larger school districts in our area. I’ll do the little districts later and I’ve also got to get our information to some other social service agencies, foster care groups, etc… Next week.
The support group meeting was good, a little draining. Oddly enough, though I was bracing myself against the stories of the future, it was the diagnosis stories of the various moms that really got to me. We are so unbelievably lucky to have gotten our diagnosis so quickly and decisively. Because Prader-Willi is so unusual it is often overlooked early on and many parents go through weeks or months of dead-end tests and miserable prognosis projections before they have the resolution of a firm diagnosis. Lucky or not, revisiting those days — not so long ago, was taxing.
There was a bit of a reality check for all of us in our meeting. The use of growth hormone has certainly changed the landscape of life with Prader-Willi syndrome, it is vastly improved — no doubt. There are some very heartening stories out there of people living completely typical lives in spite of the syndrome and while I don’t wish to rain on anybody’s parade, there are still issues to contend with. I tend to be more maudlin in my outlook about everything, not just PWS, while Tammy tends to be much more optimistic–though I am working hard to only be realistic.
I think that Saturday kind of reminded us of where we are–there are going to be challenges–there will be food-seeking, there will be weight issues, there may be scoliosis, there might be mental retardation. To what degree, who knows? But what do you prepare and plan for so that whatever comes, Hope is taken care of? We’re going to need to add a special needs trust to our estate, we’re going to have to learn about group homes and sheltered work environments, SSI disability, Medicare, to name a few. Sure these things are a long way off, but there are gaps and holes in them now that need fixing so that if/when we do use them they work for us–for Hope the way we’d want them to. The opportunities for zappings are abundant, but the pull to learn, to contribute is strong. It’s the same pull that brings me to the rail of Hope’s crib in the middle of the night, that covers her feet with a blanket, that places a hand on her chest to feel the rise and fall of her breathing.
It’s love, but it can be exhausting.
So within 24 hours of our meeting I was sick with a nasty cold. Tammy had to stay home on Monday so I could go to the doctor. I never go to the doctor for everyday illnesses but I am so worried about Hope getting something that I went. I was tested for strep and mono, negative on both, but I have a chronic case of “two-year-old-in-daycare.” Grace has been a faucet of mucus for two weeks, which probably explains why she’s been so ornery lately. Poor thing, I don’t know why I’m always so out of touch with her when she’s sick, I’m always the last to know–if she’s not blowing chunks I’m just clueless. This all has me kind of rethinking the whole daycare thing. Grace loves it, no doubt, but it’s so expensive and the viruses…the whole point of being a stay-at-home mom was to avoid those things. And with Hope…after I read that abstract on premature deaths in kids with PWS and the relation to respiratory issues I slept on the couch with Hope in my arms for two nights then moved her back into our bed for another three (until I got sick). I’m terrible at detecting illness in Grace, who can at least emote if not perfectly explain what her problem is (she’s getting close though), I can’t imagine how I’m going to be able to tell if something’s wrong with Hope. I’m just plain terrified that we’re going to end up in the ER with some nothing-little-bug that she just can’t handle and I didn’t pick up on in time.
So, paranoid, protective, or perfectly reasonable?