Wednesday, May 02, 2007

upwards swing

Eldest update:

Well, the kid is still driving me nuts, but I've got weapons in my armory, starting with...telling him so. But with a grin (and gritted teeth, but still a grin). Today, I put on a big straw hat and did a cackly midwestern voice, pretending to be Crazy Farmer Brown. Yer drivin' me nutsh, shonny, I told him. He laughed, and laid off.

I also remembered a long standing conversation with the Man, wherein I informed him that the best response to a cranky me is a hug. He said, but when you are in that mood, the last thing I want to do is hug you! This is probably true (and possibly wise), but physical, affectionate contact does so much to remind a person that they are loved and valued that I told him to suck it up and hug me already. And so I have done for the Eldest today, and while it was by no means a great day, it was an extremely acceptable one. Until he collapsed at bathtime. Oh, well. Onwards we go.

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The Toddles and I went for a playdate on Tuesday morning, an experience so delightful in the Toddles' eyes that he and his playmate both were unable to eat lunch. They hopped up, ran around the patio (we were outside, in the sunshine!), and the Toddles enagaged in a popular Imperfect child pasttime: collecting rocks.


Having hauled him back to the table for the nth time, beloved rocks in his fists, I asked, 'Oh, are the rocks going to have lunch?

Grinning, he held the rocks over his plate and said, 'Num, num, num!'



Apparently, the rocks enjoyed their meal. So did I.
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This has been a week of open doors. Sabbath lunch with friends, invitations to sabbath meals, and the playdate on Tuesday. During lunch at the playdate, the other mum leaned over the table to tell me that she'd gotten up that morning to find that her husband had carefully cleaned up the place, in preparation for our arrival. I spent several necessary moments staring at my plate, blinking hard.

The sea change that somehow happened is inescapable. Now a singalong veteran (of two whole sing-alongs), the Toddles walks around, singing to himself: ingle, ingle ingle ar. Ow I, ow I ow I are. Uppa bof, uppa high. Like a dimon inna sky. Ingle, ingle, ingle ar. Ow I, ow I, ow I are.
I have to smile each time I hear it.

The idea of a community of friends who make the extra effort is an astonishing one to me. The Man firmly believes that we should never ask anyone to accomodate us especially, but when people offer, well, that's different - that's not imposing on them, he says. I have a different perspective: I think that the mettle of a community shows in cases like ours. To welcome us, you need to value the connection between families enough to invite us and to take on the additional effort needed to make it work. (Translation: making it work = no ambulances. No pressure, ya know.) And you need to get past a hefty psychological barrier to do it. It's the difference between a casual stroll in the park and a week long camping trip. Socially speaking, that is.
Note: this is not an original thought, nor is it a new thought for this blog. This is just me, fumbling around to find a way to gracefully say, damn, but y'all rock - and we appreciate the heck out of you. Which is not something I tend to say gracefully (the diagnosis of hyperactive, paranoid immune system does not come with a lesson in allergy social graces. It should, but it don't). But back to the post.

My mother's panic over having us visit for Passover is a classic example - once the MIL invited us for Passover, my mother perked up. She's having you over? How? What is she feeding you? How is she managing it? Before the MIL's invitation, these were questions that couldn't even be asked. After the MIL's invitation, it was clear that someone, somewhere viewed this as a manageable effort, meaning that hosting us for Passover was a matter of details, rather than overwhelming impossibility.

In the bleeding disorder community, we trail along the edges, attending a select number of events (mostly food-free), including those that the New England Hemophilia Association makes allergy-friendly, such as their upcoming SpringFest. But we've never been to a big national meeting, never looked out at the crowds of people dealing with bleeding disorders - oh, woe wurra and woe. Or not.

It doesn't bother me much, actually, except as a point of principle that the NHF and HFA*should* accomodate us - allergic kids are 8 out of 100 children, and a community dealing with a rare disorder should be sensitive to the more common one, no? Maybe. But allergic or not, we seem to be going to a hemophilia conference - and one for a similarly marginal community, the inhibitor community.

Let's start with a quick definition of hemophilia: hemophilia is when the body fails to make one of a number of proteins needed to create a clot. Most commonly, people with hemophilia don't make any of this protein (severe hemophilia). The treatment is to replace the missing protein by injecting it into the blood. That wears off after a while, so you inject more, preventatively, or you inject it only when trying to manage a bleeding episode. End definition.

Inhibitors (briefly) are when the body makes antibodies to the clotting protein, trying to protect itself against this foreign object. Remember, most people with hemophilia make no clotting protein at all, so the body is unlikely to recognize the stuff when you squirt it in. The treatment for hemophilia is simple, and the magic bullet that is clotting factor (protein) is extremely reassuring.

Now, imagine that you were told that your kid could be temporarily normal (heh) with an injection. Feels okay, but fragile, right? Now imagine that you've had even that fragile rug pulled out from under you. Look down: do you see the black hole that is under your feet?

The Eldest had an inhibitor when he was a wee little person. His bleeding pattern was pretty aggressive, and he'd get bleeds at the sites where we'd inject the clotting factor. Imagine it: the same spot where he got the meds that were supposed to stop bleeding, and it would be inflated with blood - like little golfballs under the skin. Obviously, the factor wasn't working, and I started a six month long argument with our doctors about it. The argument ended with the Eldest having surgery (to insert something that would make it easy to give factor regularly), being diagnosed with inhibitors during surgery - not the best moment, hm? - and me swearing steadily and inventively while the hemophilia nurse practitioner sat patiently.

We got a new hematologist. And a pile of contradictory, speculatory articles from Medline and webMD that essentially said that inhibitors are under-researched and under-understood. Yay. Eighteen determined months later, the Eldest had been tolerized to accept and use the clotting protein, and we were back in business. With a quirk as a parting shot from the inhibitors, but quirks are okay.
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In 2006? 2005? Novo Nordisk, the company who makes the (brutally expensive) stuff you use when you've got inhibitors, announced funding for research into inhibitors. They also held their first inhibitor summits. I tried to sign up, but was mistakenly told we didn't qualify. This year, I tried again.

Last week, I got a call from a nice lady who took our information, and told us that we'd be flown to the summit, picked up at the airport, and hosted at a hotel. Day care and food would be provided, and...reeling at the idea of this largesse, I interrupted politely. My boys have a lot of nasty food allergies, I explained. We thought that at best, my husband would watch them and I'd go to sessions, or most likely, just I would go and the boys would stay home. There was only the faintest pause on the other end of the phone. Well, we'd need to teach the staff to use EpiPens - do you have those? And as for food, well, could you bring some for them? Yes, I really could. I can also train your staff to use the Epis, I told the nice lady, and if you want, I can do a hemophilia 101 for them, too, while I'm at it. Without missing a beat, sure! I was told, and we were all set.

The next day, I got a call. My boss said, why are we making this woman haul food across the country? We've got a chef at the hotel, just give me your list of allergies, honey, and some foods the boys like to eat and we'll make this work for you. I gulped, and told her, you have no idea what this means to us. She laughed. These summits are all about including people who've been left out, or feel isolated. Making it work for you guys is what it is all about.

And how did she know about allergies? Well, of course I asked. Honey, recently my brother in law pulled into my driveway, having been stung by a bee. He was having the anaphylactic shock, and could only point to his leg, where the Epi Pen was. I had to figure out what that pen was and what to do with it...and wouldn't you know, he was just fine 30 seconds later? Yes, I would know.

But thank you anyway.
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A brief thought for the MIL, who is now at a rehabilitation hospital, having been diagnosed with a neurological issue that badly affected her balance and certain fine motor skills. After a frightening 7-10 days, she is now relearning to walk and write, and grumps abou tthe institutional food and beds with such verve as to give me hope. She has energy and force of character, and is directing all of that, powerfully, on her recovery.

Wishing her a fierce and steady upswing...

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4 comments:

Lois Grebowski said...

Enjoy the conference. You'll get lots of good info there!

Also keeping MIL in my thoughts and prayers.

LOVE toddles' sing-song!

dykewife said...

i hope you enjoy every single moment of the conference and that the family loves it too. were you to come up here, i'd do my best to make sure that you and your boy's allergy issues were taken care of...of course, i'd have to learn about kosher cooking, but i'm sure you could help with that :) in fact, i think the allergies are easier to work with because i have no idea where to buy kosher meats here, whereas i know where to get the gluten free flours and such like.

Zina said...

B-Diddy drives me crazy too. I think Eldest and B speak very much alike. They have similar personalities.

O-Dawg still won't even talk. Okay, he says bye-bye, cow, and mama. But that's it. And no singing. *boo hoo*

I hope you enjoy your conference.

And of course you are always welcome at my home. We know all about epipens and extreme food allergies. Our kids pretty much are aligned in the allergy department so I think it is fine. And we know a little bit about kosher food - at least what the little symbols look like. ;-) And I will even break out the really nice tea!

mama o' the matrices said...

d.w., zina, and everyone else who emailed me privately, thank you.

Thanks especially to the two families who invited us to dinner and lunch this past shabbat (no ambulances, baby!). We feel increasingly welcome and relaxed in our community of friends - present and otherwise.

oh, and Zina? I had a cup today. It *is* good tea. Ahhh.