Wrestlemania

One of the things that makes Maggie’s social/communication…whatever this is so hard to diagnostically pin down is her emotional acumen. Whatever else she may be, that child is a born caretaker–loving, generous, empathetic. She spends a lot of time with her dollhouse and in her kitchen, making sure everyone’s needs are attended. At our in-home interview last week, Maggie fixed a plate of (wood) cookies and a (toy) cup of coffee (air with pretend milk and sugar) for the education advocate. She had not the slightest idea of how to answer a direct question, but gosh, she wanted to try. Maggie desperately wanted to make this friendly, grandmotherly woman comfortable and give her what she wanted. It was as heartwarming as it was heartbreaking.

Maggie is calm, quiet, and gentle, especially with people and animals she’s familiar with. Dogs…no. Much too boisterous. Kitties? Approachable. Guinea pigs, like the ones from preschool? Oh, yes please. Let’s pat and snuggle. Overall, adults are much easier for her to deal with than children her own age. Toddlers and young kids are fast-paced and noisy, constantly transitioning. I mentioned Maggie’s preference for the calmness of adults to the interviewer, noting “I can’t tell if she’s on the spectrum or a super-introvert or just a three-year-old trapped in a Victorian-era 40-year-old’s body or all three.” There are times when I think if we got Maggie a rocking chair by a woodstove and a proper teapot, her obstacles would dissolve away.

And in the midst of all this…is Moira.

Moira is, without a doubt, one of the best “therapy tools” we have for Maggie; Maggie is the type of kid who NEEDS a sibling to force her out of her comfort zone. Moira does not care about your personal space issues. Moira, frankly, thinks your idea of personal space is bullshit and you should reevaluate, because Moira wants to LOVE YOU and your ISSUES are impeding her ability to freely bestow her loving. She is, in the most flattering sense I can muster, just like a puppy. Moira follows Maggie around with body language that simply begs “Oh please! Tickle me! Rub my belly! Hug me and put me in a headlock and wrestle me to the floor! Give me kisses! Let me kiss you back! Wait where are you going LET ME DROOL ON YOUR FACE.”

At first, Maggie was horrified by such a display of exuberance. To her credit, she never got physical with Moira (or any child unwelcome in her space). She never hit or pushed to get away; she simply relocated. Then Maggie started to realize that Moira was pretty good at playing, especially because she’s not quite walking yet–when Maggie is done, Maggie just walks away and seeks the high ground. I have no idea what will happen when Moira can walk and climb, but that’s Maggie’s problem.

Yesterday, the girls spent quite a bit of time playing peek-a-boo around the coffee table. Maggie gave constant, affectionate hugs and Moira reciprocated with gleeful shrieks. Moira snatched up fascinating toys and packed them up her nose and into her mouth; Maggie gently removed them and gave her more appropriate toys.

And finally…she wrestled. As only Maggie can.

She put Moira in a very careful headlock and ever-so-gently threw (re: delicately laid) her on the floor. Cue delighted giggles. Then Maggie hid under a blanket (protecting the hair Moira loves to yank) and yelled “Where’s Maggie?!” until Moira pounced on her head. She picked up a Moby Wrap and when Moira grabbed the end, Maggie slowly dragged Moira across the floor (under my supervision, of course–no strangulations on my watch!) while Moira howled “Aggie! Aggie!” with the joy of a friendly little puppy who just wants to tussle.

These girls…I don’t know. I don’t know how my heart hasn’t burst from all the love. They are just wonderful.

Forward

This year has been tough. Really, really tough. So here’s some stuff that’s going well, because that’s what we should be dwelling on right now.

1. Pretty soon, we are leaving for eight days in the south of France. Avignon, Arles, and Aix. We’re going to see the land that inspired Cezanne, Monet, and Van Gogh; we’re arriving in time for the start of the grape harvest. I personally plan to eat the cheese. THE cheese, not just cheese. As in, I’m going to eat ALL the cheese. No more for you, France. Mine. Merci. The expected temperature? Mid-80s. That noise you heard was my very soul giving a deep sigh of relief.

2. Moira’s birthday presents (FIRST BIRTHDAY OH MY GOD) have been purchased from Etsy and are en route: a personalized name puzzle and two pumpkin figurines for our collection of wooden nature fairies. We also ordered the girls’ big Christmas gift back in July–a refrigerator to match our little wooden kitchen–in anticipation of a major holiday mail delay, and it arrived last week. That was…unexpected. Awesome, but unexpected.

3. Tom is working on mastering a new English dessert every month for a year. I don’t think that requires any further explanation, do you?

4. As of today, my parents have been married for thirty years. May my hair look as good as my mother’s does after living with Tom for thirty-plus years.

5. Both girls are, in spite of various obstacles and hurdles, thriving and happy. They are so, so, so very happy and they are loved by so many people. This is what my days are like all day, every day. I love it.

Circle Game

Last year, I wrote about what I saw and I brought the information to the doctor like a good mommy. He said it was stress. It was too soon to tell. Maggie was young and undergoing two major life changes: moving to a new country and a pregnant mother. It was stress and only stress. I wanted to believe him–we all did–so I did. The doctor recommended a Montessori-style preschool for her, and I called that day.

I asked the teachers to keep an eye out, to see if they observed anything…different. “She’s very young. She needs time to adjust.” It was true, and she did, and we gave her that time, and still we were the Watsons to Sherlock.

As ever we saw, but we didn’t observe.

Maggie improved dramatically, and yet conversations with other children of the same age left me with an icy pit in my stomach. I could never talk this way with Maggie. I thought about the way she responded–or didn’t, or couldn’t–to questions. Her masterful coping with memorized scripts and her brilliant mimicry with contextually appropriate passages from books and movies. If you didn’t know better, if you weren’t the one sitting on the couch reading those books again and again to her, you would never know. I brought it up with her teachers and their faces fell. They started to watch more closely.

We heard from family. From friends. “Oh, she’s still very young.” “Who can tell? Kids are so weird under the best of circumstances.” “All she needs is love and time.” Then a dear, dear family friend–Maggie’s namesake, in fact–who works for a special organization sent us the information that started to form the outline of the puzzle. We read the fact sheets with dawning comprehension.

Finally, her teachers summoned us to a meeting on the last week of term. “We think Maggie should be observed at school by a therapist.”

A lot of words were tossed out. Echolalia. Socialization. Give-and-take in dialogue. Scripting. “We aren’t experts in what this is or might be or if it’s anything. We just know that we think an expert should weigh in.” said those kind, kind ladies who love Maggie so. “So we want your permission to have her observed.”

And finally, finally, we knew that someone else could see it too.

We gave our permission immediately and are waiting on a date for this fall. After hours of research and reading, Tom and I have a pretty good idea of what we *think* this is–not autism, no, that’s too broad, but something else; something a little more specific. I’ll wait until after her evaluation to say if we were right. We have resources, monetary and emotional. The things that are locked up in her brain are just at the surface, waiting for a skilled team to help us crack the code. Don’t feel sorry for her, or for us.

The only thing I can feel about any potential diagnosis is relief; relief that we are being heard and taken seriously by people who love Maggie. There’s nothing in my heart but gladness that we are going to find the tools to help our baby express her worldview–her beautiful, wonderful, unique Maggieview. There’s an entire world locked behind those liquid chocolate eyes waiting to be revealed to us.

I can’t wait to get her a locksmith.

Luddite

It’s 2012 and I’ve never had a smartphone. I think there was a bit of a tipping point right after we left Hawaii because when we went to the States in May, EVERYONE had a smartphone of one kind or another. iPads too. The boom was incredible. 

Me? I have a pay-as-you-go British mobile and Skype on my Macbook and iPod. The phone’s only practical use is a paperweight and as an emergency contact number for the preschool. I think Tom is on his third phone since we’ve arrived–I know he’s washed at least one. (We’ll come back to that.)

While in the States we had access to New Hampshire, that mecca of sales tax-free shopping. So I decided to join the last decade, at least, and buy myself an iPod Touch. I flirted with the idea of an unlocked iPhone with a replaceable SIM that I could use in America and the UK, but decided against it. An unlocked phone would cost about as much as replacing my old stolen iPod, our point-and-shoot camera, and my current mobile all together. While an iPod Touch would be enormously useful while we travel, I didn’t call people enough here to justify a new phone. And of course, our regular point-and-shoot camera–a lovely Canon model–was doing just fine.

Tom wears cargo shorts around the house. They’re pretty heavy. It’s hard to notice extra weight in the pockets, which I normally only check if I hear the jangle of loose change. 

Stop me if you see where this is going.

Yep, I washed the camera. I washed that sucker good. And as an added bonus, I also washed a pen. A part of me was furious at Tom for leaving those things in his pocket and then leaving his shorts on the floor, but ultimately the buck stops at she who loads the washer. Amazingly enough, the memory card was just fine, but the body of the camera was toast and the medium-colored items in that load of darks were spotted with thick blue blotches. 

As the British say, “Bugger.”

In hindsight, I should have just gone with the unlocked iPhone, but who expects the Spanish Inquisition? Or a camera full of Tide suds? Not I. I thought I was smarter than that–I should know better–so I didn’t even think about it. If this iPod lasts as long as my last one (which, as far as I know, still works–I just forgot to ever claim it from the evidence department) it will be about 2017 before I can get my iPhone…ten years after the original came out. Who knows what they’ll have then? Probably bio-integrated touchscreens embedded in your forearm with super-cameras. My old phone will still be my paperweight, if paper is still around.

Oh well. Not everyone can be an early adopter.

Fixer-Upper

So! Bad news first: Moira’s going to need surgery.

Good news: it’s a pretty simple procedure, during which she’ll only be under general anesthetic for about two hours. After that she’ll be given drugs–but not kept unconscious–to keep her immobile for 3-4 days until she recovers. Once she recovers…that’s it. She can go home and resume the business of babyhood with no restrictions on her movement or activities. Moira might be a little clingy, in which case the best prescription is love, snuggles, and her favorite snackies.

More good/bad news: she is likely not suffering any pain at all right now. Good in that she is in no pain from her hernia, bad in that something is keeping her awake and we are at square one again. We’re thinking teeth. Awful, wretched, horrible teeth. She’s probably also sensitive to dairy and gluten, which is a separate matter and one we can deal with quite easily (like, don’t let her pinch cheese off Maggie’s plate).

Best news: this is a one-time deal. Once she recovers, she never has to think about it again. This type of congenital diaphragmatic hernia is called a Morgagni hernia (hi, Googlers! Make yourselves at home) and does not have the symptoms–or the underdeveloped lungs and life-threatening potential outcomes–of other types of CDHs. She is at risk of a strangulated intestine, yes, but her lung function is fine.

We’re bummed that she has to have surgery at all, of course, but no life is free of complications and in the general scheme of things, this is a fairly minor bump in the road. The facility in Leeds is excellent and we’re confident about the care she will receive there. Since this world-class medical attention is not costing us a dime (what UP, national health care!) we decided to do the karmically nice thing and donate a few extra Wii-motes to the pediatric waiting room so more sick kids can play with the Wii there. They have a sweet setup but apparently sometimes the remotes “go wandering.”

The fact that Leeds is only 30 minutes from our house is probably the best part of this whole scenario. Trying to get her initial appointment scheduled was difficult. The infamous NHS wait times loomed. But it’s a bureaucracy, the NHS, and if you’re willing to lean hard you’ll get what you want. Tom made a phone call and I had Moira’s pediatrician weigh in, our appointment was scheduled in a prompt and convenient manner and we’ll schedule the surgery this week for October. And really, I don’t think that’s unique to the NHS. I’ve had more ridiculous wait times and unpleasant receptionist experiences in the States than I’ve had in England.

I will say when we got irritated with the scheduling, we toyed with the idea of bringing her back to the States to have it done in Boston but logistically that would have been a nightmare. Add into that the fact that one of us invariably gets sick when we cross that many time zones and…yeah. Undertaking an international health trip for the four of us to get Moira to Massachusetts (or wherever our insurance would have covered) would have been a nightmare scenario; the absolute last resort after all other options had been exhausted. I’m glad we only have to go 30 minutes from home. Maggie can continue to go to school and have play dates with helpful friends and sleep in her own bed; Tom can stay at home at night with her and spend the days with me in the hospital. It’ll be a hard few days, but it will pass.

So that’s that. Once Moira gets patched up, she’ll be just fine and we can resume our lives. We may even book a vacation for November. Onward!

Sleepy Sheep

When we were in Maine, Moira became sick. She was unwell enough that we had her taken to the ER by ambulance (a $2000 venture that we are STILL working out with our health insurance) where she was given a chest x-ray to rule out more serious lung conditions. She was diagnosed with croup and we were sent on our merry Prednisoned way, poorer and more tired but wiser.

The next morning we got a call from the hospital. The x-ray had turned up an unrelated condition: a portion of Moira’s intestine was pushing into her lung cavity through a hole in her diaphragm, a condition called a congenital diaphragmatic hernia. We would need a copy of the x-ray to take home with us and to consult a specialist promptly.

My upper body didn’t literally collapse into my stomach, obviously, but if I had to guess what that feels like I think the feeling I experienced was close. It wasn’t until after we came home and saw our doctor here that Tom even accepted that there was a problem; he chose to believe that the scan was misinterpreted.

This week we begin the grind of specialist appointments to determine next steps. Moira is one of the rare 2% of cases that are asymptomatic, but is still at risk for a strangulated intestine (think of a garden hose with a kink in it). It didn’t show up on her 20-week ultrasound as it does in most cases; if it had been the 98% type, we would have had a hospital birth and she would have likely needed surgery at birth to be able to breathe. We are lucky. She is lucky.

The Big Thing now is that we may be starting to see symptoms of a problem. There’s just nothing we can do anymore to make Moira more comfortable at night. She sleeps so poorly. She can’t lie on her back at all and digestion seems difficult for her. It’s awful for her, but she is so happy by day. It’s amazing how happy and smiley Moira is. It makes us forget that she went from sleeping normally as a newborn to a child that is up every hour or two. We can’t be sure that’s related to the hernia, but I can’t imagine that’s helping.

We really just want her to be well and happy. My sleepy little bear is so good-natured and cuddly by day but at night it becomes a constant battle for her to rest. This will pass, like anything else. I’m just worried that the only solution is surgery; Moira is so active that I can’t believe they wouldn’t have to sedate her for a while so she could heal.

We will start getting answers this week. In the meantime I’m tapping this out while Moira sleeps semi-upright in my lap for a brief pre-dinner rest and hoping to complete just one REM cycle tonight. At least I get to enjoy the snuggles in the meantime.

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