Sarah's Story the story of a young girl's continuing fight with Crohn's Disease

Irene was downgraded to a Tropical Storm before it even made landfall on Connecticut, so, that’s good. There has still been isolated severe flooding and tragically,lives were lost. Some through no fault of the victims,  and some foolishly, sadly. Everyone here is in one piece and accounted for, and that’s good.

Unfortunately our power went out at 4AM on Sunday morning, while the storm was still just a steady rain and there was hardly any wind to speak of. Our street is out, but the crossing street that we draw from is not. It’s pretty aggravating because Connecticut Light & Power came in last year and razed several dozens of trees on our road, put up new poles, lines, and transformers… basically all new infrastructure. So why, then, were we the first to go out? I called in an outage report on my cell phone at 4:30AM and we waited until the winds picked up to wake the kids and bring them downstairs. Izzy was pretty confused at being woken up by lantern light, but she took it all in stride until nap time, when we had no internet radio for her to go to sleep to. That was the last straw, and she was hysterical for an hour. Too much change all at once for a two year old kiddo.

Sarah is getting her first tough lesson in what life is really like without modern conveniences. Not only have we got no power, but we’ve got no running water because our well pump can’t be run. Her last big power outage was a handful of hours and most of it was during the night. We’re flushing toilets with buckets and warming washing water on a propane stove. It’s stressing her out a bit, and I’m really worried about the steroid wean staying stable this time. If it doesn’t, hospitalization in Boston is inevitable. If you have Crohn’s, you know that running to the bathroom several times a day with loud diarrhea is already stressful and embarrassing. You might imagine that the experience is only compounded by then flushing with a bucket of water, and then parading with the bucket down to the basement to refill it. We’re using salt water I had stored for the fish tank in order to conserve our drinking/washing water, but we’ve already used about 50% of what we had and it’s only been about 30 hours. Then there’s the issue of no running water and the hygeine problems of constantly having to use the bathroom, for both Sarah and me. Hopefully we’ll at least be able to find a nearby laundromat that has power and isn’t swamped with customers later in the week.

I checked the status of our outage report online this morning, fantasizing that there might be an ETA for restoration even if it’s seven days, which we’ve been warned is likely to be a minimum. No such luck, though. In fact, not only was there no ETA, but the online system informed me that no outage at my address had been reported. So, my report from 4:30AM yesterday was lost somehow, which is a little unnerving. It’s one thing to know that you’re at the end of a very long list. It’s another to know that you’ve been stricken from that list without so much as a “hello.” I re-entered an outage report and then tried to call CL&P to let them know what had happened, but of course getting through on the phone right now is impossible.

Later this morning, CL&P’s PR people posted a reminder on Facebook to call one of their two hotline numbers for questions, outage reports, or emergencies. I replied with, admittedly, a rather frazzled comment that I’ve been trying to do just that.  That I’ve got an infant and a sick child at home within a hair’s breadth of a hospitalization, no power, no water, and the database at CL&P seems to have it out for us. The Facebook poster was nice enough to offer me her direct email address and I gave her my address and phone number to be forwarded to “a supervisor in Customer Service”.  We’ll see how that goes. There are 650,000+ homes without power in Connecticut right now and there are no doubt more severe emergencies than ours.

Some friends and acquaintances on Facebook who still have power have been kind enough to offer up extra D-cell batteries for our lanterns and for the backup air-bubbler that’s keeping my fish alive for now. So far so good on both lanterns and fish. We had enough batteries for two days but it’s looking like we’ll need a bit more than that and no batteries are to be had in any store right now. I’m hoping to find water today and maybe some bread when I go out looking. Because we can’t keep milk for more than one day, we’ll be buying that daily, too.  It’s times like this that I wish the house weren’t a log house. The walls and ceiling are a dark, aged pine that sucks up sunlight quite efficiently, so it’s dark as a cave in our house even during the day. Izzy is doing OK with it so far, and at least there’s more sun today than during the storm. I was able to use my laptop last night to show her “Make Way for Noddy” on DVD before bed, which was quite a treat after having no television all day long, apparently. She danced and jigged all through the show and then settled down to sleep almost immediately.

Sarah’s bored, frustrated, and mopey. I wish I could come up with something to occupy her mind but at thirteen if it’s not the internet or a video game she doesn’t want anything to do with it. I’m still not sure what I’ll do. She knows that getting herself worked up is bad for her condition, but that just starts a vicious cycle of frustration followed by worry followed by more frustration. If Sarah fails this steroid course then that’s probably going to deny us our chance to get the 6MP working again. We’ll lose credibility with the docs in our argument against the colectomy.  It’s not good.

Screw you, Irene.