the wonders of speech

Thanks to Zina, I spent bits of this past week, test-driving an Ergo carrier. Once I realized that a chest strap was, in fact, a shoulder strap (manual, need manual - ah), things went extremely well.

The Toddles and I walked with the Ergo (he fell asleep), we weeded in the Ergo (he still slept), and we went to the playground with the Ergo (he woke up), where I improvised a hat for the kid out of a bandana I had stuffed in my diaper bag.

As you can see, he found the experience one of profound gender-confusion. Or maybe he had fun.

I have been curiously reluctant to take the Toddles to playgrounds, not because of allergies (he does tend to find all sorts of food wrappers), but because I have this strong feeling that I actually don't enjoy going to playgrounds. Still, on this warm, sunny day, ripe with Ergo-nomic triumph (sorry, couldn't resist the pun), off we went.

We were doing really well for a while: I pushed him in the swing, and taught him to say 'Weee!' Then, I chased him around a climbing structure, making admiring noises as he clambered handily up and down things, and extravagantly shocked noises when he went head-first down a tiny slide.

I was laughing at my own anti-park stance as the Toddles and I bounced on this trampoline-ish web, when he turned to me.

Aauwwff! he said, firmly, and pointed an imperious finger.
Off? Me? I said, astonished.
Auwff! he repeated, and jabbed his finger at me, sternly.

Humbly, I got off the trampoline-ish thing, and stood by as he played. Oh. That's why it's not so much fun.
****************************
Making my morning coffee, I heard a loud, determined rattling sound. Eventually, I tracked it down: it was coming from the family room (aka the dining room, but who cares?), where the Toddles was trying to open a cupboard. Feeling unequal to the task, I stood in the doorway, holding my mug in front of me, protectively.

Can I help you? I asked, politely.
Tain! Tain! he shouted, pointing at the cabinet.

I opened the cabinet, and pulled out the box of train tracks. Vaguely, I was certain that he is too young for them, for the fine motor skills nedeed to assemble them, the patterning skills needed to make an effective track, but what the hell, I hadn't had my coffee yet and there wasn't a choking hazard in the box. I pulled it out.

Damn. Who knew he could do that?
*************************

Later that day, shortly before dinner, I'm flat on my back with both boys lying on top of me, laughing. From this position, I decide it's time to continue the conversation with the recently stressed-out Eldest.

Okay, kid - you have power here. (You're sitting on my solar plexus...) What do you choose?

He looked thoughtful.

If you want, you have the power to read to your brother, letting me cook dinner as quickly as possible. Or, you could play by yourself while he hangs out with me, which will slow things down a little, but dinner will get made - though probably not as quickly as you might want. Or, you could also hang out in here with me (and my -aghh- diaphragm), and dinner will probably not get cooked at all.

What do you want to do?

The Eldest barely paused.


Later, however, Mum, is dinner ready? I've discussed this with my stomach, and it says I'm starving!

Almost there, hon. I'm finishing the salad. It's got watercress and pears and roasted sweet potatoes. Now, I know that pears and roasted sweet potatoes sounds odd, but the balance of -
(cutting me off)
Oh, no! It's the 'no, not that - oh wait I like it' game. (rolls eyes and stalks off, theatrically)

Looks like my fiendish non-plan is working...hug the kid a lot, remind him of his power, as opposed to my obvious ability to rain down punishments - er, consequences - is working fine. Oh, yes, and there's one more thing I'm trying - but that's for a future post.

****************************

The Oh, No, Not That Salad

watercress/baby arugula
1-2 ripe pears
scallions (optional)
leftover roasted sweet potatoes (I like to toss mine in olive oil, with paprika, garlic powder and chili powder, roast at 425F for about 40 odd minutes. I serve it as a side dish, but it's a a great salad addition!)
green lettuce (romaine is fine, red/green-leaf better)
Optional: blue cheese, radiccio, endive, napa cabbage

dressing:
3 cloves garlic, 1 tsp salt, 1 tsp sugar, 2 Tb fresh dill, 1/4 c red wine vinegar, 2/3rds c olive oil, 2 Tb water.
Whirl all but liquids in food processor until minced. Add liquids, whirl until frothy. Keeps in plastic container for 1-2 weeks, keeps just under a week in anything metal (you can put a plastic sandwich bag under a metal lid - the dressing gets a metallic tang after a while).

Slice pears, combine until satisfied with balance between fresh pear, sharp arugula/watercress and mild lettuce, any optional additions. Toss with a bit of dressing (a light hand on the dressing is good here). Serve!

*****************************
Update: the MIL continues to improve, and today the Man is visiting her. I'm glad she's now ready for her children to be with her, it says much for her state of mind. Meanwhile, the head of our home care nursing company (the employees are all amazing IV nurses, and they specialize in infusions) told me today that they see some patients dealing with neuropathy, who get infusions at home. She assured me that for many, the MIL's diagnosis is one of maintenance and care, not of steady debilitation.

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.

***************



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.
*****************
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.
***
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.
**************************

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...

*****************

dancing on the edge: conflict and (some) resolution

I write a lot about the Eldest, usually under the mental heading of maternal pride and advocacy (by him or by me). But, I have to admit, right now the kid is driving me nuts.

Stark raving nutters. Up a frigging wall. Round the bend? Ha. The bend was a few kilometers and grey hairs back, my friends - it be getting ugly around here. But, being the intelligent, thoughtful person that I am (when I'm not shrieking at the child), I have analyzed the situation and come up with a few thoughts.

**************
In retrospect, it all began to surface here:

One night, at about 5 pm, I was making dinner while the boys amused themselves. Inevitably, such amusements are supervised mostly by me peeking through the pass-through and saying things like, 'okay, boys, let's calm our bodies down! It's getting a little wild in there,' and going back to whatever steaming pot/beeping timer demands my attention. Eventually, I'm hollering 'okay, guys, let's not play rough! Get off your brother's neck, please, he can't breathe!' and ultimately, stomping in to a room and calling a child by every single one of his names.

Ah, good times.

That day was typical, and the boys were scaling up the activity, frenicity (is that a word? it should be) levels. I said, calmly (okay, mostly calmly), 'Okay, kiddos, please remember that you guys tend to play pretty rough at this time of the day, and this is also exactly the time of day when you are most likely to have one of you get hurt, or end up wailing. So please be mindful of that, and play quiet games.'

We ended up in the ER, the Eldest having whacked his head on the hardwood frame of the futon while playing some game. Naturally, he was at the end of the lifespan of his dose of clotting factor, and the combination of low clotting levels plus whacking his skull that hard meant that he needed a neurological exam and probably a head CT scan.

Every single doctor who walked into our room had to stop, gulp slightly with laughter, and then sternly told the Eldest, 'no more monkeys jumping on the futon!' No, really, every single one - and some who know us, came to visit. Or maybe to deliver what they thought was an original and funny line. Couldn't say which.

Certainly, the Eldest thought this a funny line, because he laughed and wiggled and squiggled so hard that he fell off an examining table, hurting his foot and needing an icepack. Being a resilient fellow, he bounced back from this and soon invented Whizz, a game played by lying on one's stomach on the low, rolling examining stool and pushing off into open space at high speeds.

This game must, of course, be played where there are swathes of open space - the corridors of the ER? At first pass, he nearly hit a patient towing an IV pole. His second pass, he nearly knocked over his nurse. His third pass, he fell off and landed hard on his bum...and got another ice pack. I laughed with him - and then off we went to the CT scan.

The Eldest took absolute charge of the scan, and I was immensely, explosively proud. He hopped right up on the gurney, explained to the tech that he'd done this before, and picked out my lead apron. He told the tech to start the machine, me to be quiet, and lay still the entire time. In retrospect, this was a major clue.

Afterwards, he was a hero. But he was also a hero who couldn't sit still, jumping up and prowling, climbing cabinets, getting underfoot and into trouble. I watched him be unable to sit still and started to worry. Just then, the ER doc walked by. The Eldest darted out into the hall. Do you have the pictures, he asked? Yup, said the doctor, and we followed him to the staff station. There, we looked at pictures of the Eldest's brain, courtesy of the scan. The radiologist says it looks fine, the doctor told me. I'd expected as much, he continued, given how good this kid looks. Well, we're a borderline case, I said absently, absorbed in the computer screen. And those scans only catch about 5% of microbleeds, anyway. We'll give factor for the next few days, regardless. The doc paused. Oh, he said. Well, why don't I write up some discharge forms, and I'll be by to talk to you about them.

Half an hour later, the Eldest was dancing in place (having been forbidden to climb the cabinetry), and I was worried. Something was setting the kid off, and he was going to do himself some real damage. So, I wrote a note: Dear Dr. X and Dr. Attending Y. Thank you for your care. We will follow up with our hematologists tomorrow. We have no questions or concerns. Sincerely, the Imperfects.

And we left. The Eldest bounced all the way home, drumming on the balloon he'd been given, chattering a mile a minute while, exhausted, I tried not to shriek at him about shutting up.
**************************



So, what's wrong with the story? It's a good one, no? Kid has incident, parent advocates, medical system flawed, parent knows her stuff, gets them out. Okay, not before the kid gets a nice dollop of radiation, but still, not a bad story. Okay, so try this photo on the right:


Awesome, no? It was the Great Tower, which reached far, far into the heavens about the heads of its builders. Now, try this next one:

Naturally, the tower came down. Natch, it was fun. But I ask you: where do you see the Toddles in these photos?

In the photo, as in real life, the Toddles faded into the background. He became a mere peon, fetching and carrying the exact block desired by the architect/general contractor in charge of the job. Subordination was not appreciated, and a lot of shrieking at the help ensued. The help, being small and frustrated, shrieked right back and clouted the self-appointed boss on the ear. Not surprisingly, I was not terribly sympathetic. I tried, though. A little.

Two days later, I gave the kid his factor at school. The other children, familiar with the routine, gathered around us, fascinated. The Eldest took them on a tour (this is the syringe, these are the gauze - don't touch them, they're sterile! - those are the alcohol wipes, and this is the needle. It's sharp, but it doesn't hurt much). He was effusive, generous, carefully making sure everyone got a turn, and completely in possession of the moment.

It got a little wierd when I asked him to take off his sweatshirt. He did, and passed it to a nearby classmate. This is my sweatshirt, he told them. You can hold it. The kid did. It's soft, the kid said, awed.

Oh, jeez. It was the Eldest Show, comments appreciated, participation required. Argh.

**************************

This all comes together in a massive control freak-out. The Eldest started showing defiance (No, you shush now, Mum!), lousy listening (this is the third time I'm asking you to - fill in the blank-), a quick anger and a general inability to pull himself out of a downwards spiral.

Putting it together, I could see the nervous energy that was driving a series of attempts to understand and manage his world. And make him look like he had to pee a lot, and make him collapse when it failed. Something - probably several somethings - was stressing him out, and he was (is!) trying to respond. His dirving need or concern was making him absolutely self-centered, unable to focus properly on other people, barring when he's shutting us out in self-defense.

Here'e my short list of suspects:

• kindergarten is coming
• the Toddles can now reach the top of the dining room table, and even do a cutely terrifying dance on it. The Eldest has lost this place of non-sibling refuge.
• the MIL has been in the hospital (she is now, thankfully, improving - but more on that later). The Eldest is worried, and is responding by not wanting to talk to her, or even write/draw her a card. He doesn't like this situation, at all.
• we are preparing to go to Australia, and the Eldest does not like big changes, even potentially fun ones
• all of the above.

According to the handout given to me by the director of the preschool, a lady who mercifully did not laugh at my collapsed and relieved face when she said that this was normal (oh, thank heavens), six year olds typically have a power struggle phase, much as they did when half the age. The Eldest may have been catalyzed into starting his early, is all.

Poor kid. Watching him struggle, I can see that this is no fun at all. From my perspective, though, it's like early training for teenager parenting. Did you hear what I said? Oh, good. What did I say? Are the ears turned on? Are you sure? What did I say? You don't know? This is the last time that I'm telling you....