How Not to Make a Kids' Movie

The new Peter Rabbit movie opened recently and has drawn a lot of criticism for its depiction of a group of rabbits attacking their nemesis with his known allergen. Using a slingshot, the rabbits shoot a blackberry into Tom McGregor's mouth causing him to have a severe allergic reaction and forcing him to his use his epipen. This is not actually the first time Sony Pictures has depicted severe food allergy reactions in kids' movies. Similarly harrowing scenes occur in Smurfs 2 and Cloudy with a Chance of Meatballs.

Just a week or so before, in response to a news story out of Pennsylvania in which three teenagers were charged with a crime after one of them spread pineapple juice on her hand and then tried to touch a severely allergic classmate, I pointed out that this kind of thing happens a lot more than people think and that I don't expect things to change until there is some kind of shift in the way we think about allergies. Severe food allergies continue to be used as a source of laughs. If it's funny to portray people who swell up and struggle to breathe after exposure to an allergen, is it also funny to depict a child getting knocked out of a wheelchair or dying from a disease? People argue that we should all just loosen up a bit, but really?

Allergy-friendly homemade pizzas!

Every time anaphylaxis becomes the butt of a joke or a twist in the story line, and every time it's depicted unrealistically, it becomes that much harder to overcome the various stigmas and misconceptions still associated with food allergies. And, as a result, the risk to our kids gets graver.

When Pink was in second grade, another kid on the bus shoved a peanut butter and jelly sandwich in her face. Several other peers have joked about doing the same thing. I get it; most kids have no idea of the kind of injury they can cause by exposing a kid with allergies to something they're severely allergic to, but can you imagine never knowing whether or not someone will threaten to try to kill you today?

Kids with food allergies are often described as weaklings or snowflakes. Their parents are accused of being overprotective and enabling. I can't help but think that at least part of the reason for these risky behaviors and negative attitudes toward kids with allergies is the fact that allergies continue to be a joke.

Another of the hundreds of lunches Ren and I have prepared over the years.

Children like Pink are fierce. They encounter serious risk on a daily basis and take it in stride. They learn earlier than most how to advocate for themselves (by reading labels and making sure they have their epipens handy, for example); they quickly figure out how to deal with being excluded or treated differently from their peers; and they become pretty adept at finding alternatives and workarounds. Plus, learning these tough lessons over and over again teaches them empathy and compassion that will serve them well for life.

So, how about this? What if we lived in a world that accommodated kids with allergies like we accommodate all other kinds of difference? What if schools spent as much time on allergy education and awareness as they do about other kinds of disabilities? Pink has had classmates tell her that they didn't invite her to their party because of her allergies. Others have admitted that they haven't had her over because their parents are worried about possible exposure. I find it hard to believe that she would experience these kinds of things if allergies were more widely accepted and understood.

As my bento post earlier this week illustrates, most parents and kids living with allergies work hard to live a normal life. We figure out how to prepare safe alternatives of our kids favorite foods. Though, we carry an epipen wherever we go, we also seek to make sure that our children live not in fear but in courage. Day after day, we do the work.

After much pressure, Sony Entertainment apologized (way too late) for the tasteless scene in Peter Rabbit, but wouldn't it be great it Sony and others who have larger platforms than our kids (who often fight this fight alone) followed our kids examples and showed a little empathy and compassion without having to be coerced into it?

Order in the Chaos

During Stow's final autism evaluation last month, the doctor told me that after seeing so many families living with autism, she's come to the conclusion that parenting with autism is just like regular parenting, only magnified by about 1000. I don't know if this is true; I can only guess what it's like to parent in a family not impacted by ASD. What I do know is that life continues to be INTENSE.

Some things are actually a little better, though. The biggest improvement? After working with therapists for what feels like an eternity, we have finally managed to help Stow get the hitting under control. This doesn't mean that various forms of bodily contact aren't happening--Stow has adopted the practice of aggressive hugging when he's frustrated. Aggressive hugging consists of using his face and shoulders to push me backwards like a sumo wrestler while he simultaneously shoves his hands into my pockets and/or yanks at my shirt.  It's still not ideal, but it sure beats the months and months  of getting pummeled. Change takes time.
 

Autism isn't the only ongoing challenge at our house. It has been 7 months since Ren's last surgery, but at this point, I can't tell if we are post-op or pre-op. The back and leg pain have returned, and the shoulder pain is slowly but surely ratcheting up. In practice, that means there are days when Ren can't do much of anything, when he looks a lot like this:

Man down.

Honestly, life's not easy. It can be hard to cope with all the chaos. And, sometimes I just need to be able to control what I can control, even if it's just a little thing.

To that end, I bought these for the kids in hopes of making it easier to prep and pack three lunches EVERY. SINGLE. DAY.

Lunch boxes lined up and ready to be filled.

Thanks to these fancy insulated lunch boxes, we can now send the kids with hot food that will still be hot(tish) at lunch time. Suddenly, the tedium of the morning feels slightly less tedious. When my alarm goes off at 5 a.m. after I've been up late catching up on work or awakened in the night by Ren's cries of pain, thinking about what new thing we can put in the kids' lunches helps me face the day. I know it sounds strange, but there's something soothing in knowing that I have control over this one thing.

When I first posted pictures of the lunches on FB, friends were amazed by how fancy they seemed. To be honest, most of it is leftover dinner. Soon I started posting descriptions of all the things that were going wrong while we made these lunches--from kids not eating, to meltdowns, to insane conversations, to Ren being laid low by pain. Maybe everyone is tired of hearing about and seeing the lunches, but for now, they are order in my chaos...

Here's a photo retrospective of recent lunches. Hope you enjoy it!

Fried rice with miso soup

Gyudon (beef on rice) with egg soup

Pork cutlet with egg soup.

Chuka-don

Ginger chicken and burdock root

Curry

Oden

Ginger pork

Beef teriyaki

Potato and bacon soup

Okonomiyaki

Sukiyaki

Rolled egg with chicken nuggets

Omuraisu

Kani-tama don

Meet Momo

Momo, assessing us at the Humane Society

Meet Momo, the kids' first ever pet. Besides the bullfrog tadpole I inadvertently helped kill, Ren and I managed to make it well into our tenure as parents without dealing with an animal. But, then we caved.

Given Pink's asthma and allergies, you are probably wondering what in the world we were thinking. Turns out, I wasn't thinking clearly at all when I suggested to Ren that the kids might like a cat. This was three days after Pink's survived her first sleepover at a friend's house. The friend had two cats, so I figured I'd get called to pick her up somewhere around 10 pm. But, not only did she make it through the night, she did it without needing any Benadryl. If that's not a sign that we should go out and get a cat, I don't know what is.

Stow's regression this summer was part of my thinking, too. In the midst of the multiple meltdowns he had, I often wondered whether a pet might help calm him. Lots of kids have pets and work out many of their socialization kinks by hanging out with animals. Plus, he's done so well with hippo-therapy (or as we call it, OT on a horse), that I thought he could transfer some of those interaction skills to a pet at home.

The kids and their various challenges weren't the only thing on my mind, though. To be honest, the other reason I started thinking about a pet is that I thought Ren could use some company now that Stow has started kindergarten.

Still, when I suggested a cat, I entirely expected Ren to say no. He has always been a dog person, and ever since that summer evening kickball game when I was 9--the one where I got jumped on by Joey, the neighbor's Great Dane that, I swear, was taller than a grown man, and ended up in the ER--I have been a cat person. I never imagined Ren would cross over to my side, but I was wrong. Like so many other times in our many years of marriage, he was not only not surprised when I suggested the cat, he was also thinking the exact same thing.

So, that very afternoon we started our quest for a pet.

First, we went to the Humane Society. There we learned that they were completely out of cats. Not willing to be discouraged, we drove to a different Humane Society 30 minutes away. That second place, awkwardly placed in the middle of a pet store, had plenty of kittens, so the kids played with several of them and picked out one that they promptly fell in love with and named Pingu. We left an application for Pingu and waited to hear from the director.

The following day, our application was resoundingly rejected. (Because on the application I suggested that the cat might go outside from time to time.) Have you ever seen the Seinfeld episode with the Soup Nazi? That's what this Humane Society was like ("NO PET FOR YOU!!"). Not only would they not believe me when I told them I didn't know that our local ordinances forbade cats from going outside (which sounds the opposite of humane to me, by the way), they also told me I could never, ever adopt a pet from them again. I was forever blacklisted. Apparently, the brief application I filled out was more than enough to convince them that we were the worst possible pet family on the planet. (I could post a copy of the letter I sent them afterwards, pointing out that they were failing at every part of their mission to place pets in families and to educate people about the humane treatment of animals, but I figured you guys have probably had enough of my ranting. Plus, it turns out that I wasn't the only one to experience their soup-nazi-like rejection. Yelp and other websites were full of horror stories about them.)

Unfortunately, I didn't know any of this BEFORE taking the kids to fall in love with Pingu. And, while our failed attempt to get a kitten seemed like a sure sign from the universe that we should rethink our plan, especially since Stow, Sky, and Ren ALL left the second Humane Society sniffing and sneezing, and Pink's eye swelled during the car ride home, the kids were more determined than ever to get a pet.

So, we decided to try again the following weekend.

That's when we found Momo.

*****

The day we brought Momo home, two lamps got broken and two cars got scratched. I can't imagine worse omens. But here, nearly 20 years into my relationship with Ren and more than 10 years after becoming special needs parents, I have finally learned that sometimes the most joy can be found when we ignore the signs.

To manage the allergies, we decided to restrict Momo to certain rooms and keep her off the furniture. Our gradual adjustment has shown us that no one is as allergic as we feared, and as long as Ren keeps up with his vacuuming habits and as long as the kids wash their hands and take their allergy meds, all goes pretty well.

Momo not staying off the furniture.

Of course, I didn't even come close to anticipating what the real problem of owning a pet would be. And, honestly, I can't begin to tell you why I didn't KNOW that having a kitten in the house would turn things on their ear. In another excellent example of my permanent naivete despite so very many opportunities for me to learn to know better, I had no idea that Stow would lose his ever-loving mind when the cat came to stay.  But he did, and it took weeks for us to be able to get through any kind of routine smoothly again. WEEKS!

Photo edited to make it publishable on my G-rated page.

He's very slowly adjusting to her, though we STILL can't get him to stop mixing her food into her water or to refrain from carrying her around when he's half-naked (which is most of the time) despite the fact he has a bit of a contact allergy to cats. And, he has NO idea how to interact with a cat that isn't completely terrifying for the cat.

Still, we're hopeful. We're hopeful that, one day, both Momo and Stow can look back and laugh about all the ways they learned how to make it in this world together.

The Best Laid Plans...

Last night Pink went to her first sleepover. In the small town where we live, sleepovers among the elementary school set are fairly common, so the invitation wasn't unexpected. Pink has played with the friend who invited her since kindergarten, and I know her mom well. Still, when she invited Pink over after gymnastics class on Tuesday, I hesitated. Pink may have been ready for a sleepover, but I wasn't sure I was.

Still, I said yes. I said yes because it's summer. And because Pink is ready. And because I don't want my fears about her asthma and allergies to become her fears. As soon as I'd said yes, though, I knew I needed to pass on some vital information to the other mom. I also knew the information might trigger a panic in the woman. That's the thing about life-threatening allergies and severe asthma--as chill as we try to be about Pink's issues, whenever I start to tell someone else the basics of keeping Pink safe, I am reminded of just how many dangers lurk out there.

*****

"She's allergic to a lot of foods," I start. "I'll send the full list, but peanuts and nuts are the big ones."

The other mom nods. Asks me to just tell her a couple of easy things Pink can eat. How do you define easy? Pizza? Spaghetti? Macaroni and cheese? I'm stumped.

"Fruit?" I suggest. "Fresh veggies?"

The other mom looks as me as if I don't understand the meaning of the words "easy meal." Eventually, I suggest Pink will do fine with hot dogs and hamburgers as long as she doesn't have cheese...or a bun.

I run through a couple of other food suggestions before moving on to the next topic.

"So, do you know how to use an epipen?" I ask as casually as possible.

When she tells me she doesn't, I discretely pull the one I always carry out of my purse so I can show her while the girls are distracted by the vending machine.

"Take off the blue, plunge the orange into the fattest part of the thigh, count to ten, and call 911," I say quickly, matter-of-factly. But, I don't want the mom to panic, so I add, "We've never had to use it, so if you're careful, it should be fine." Before I can slip the epipen back into my bag, Pink's friend spies it and wide-eyed exclaims, "Is that a SHOT?!"

We're in the parking lot now, about the go our separate ways, so I hurriedly mention the emergency inhaler and the Benadryl. I try to keep it casual but by now, I imagine the other mom is screaming "Mayday! Mayday!" in her head.

When we get to the car, Pink is ecstatic. Giddy. She can't wait for the sleepover and vows to pack the moment we get home. I'm spent, and nervous in the way I always get when I walk someone through Pink's safety protocols. When I don't think about it all, I'm cool, but when I re-live it by explaining the precautions to someone else, I'm reminded of how terrified I should be to ever let Pink out of my sight.

Three hours before the sleepover, Pink starts carrying her backpack full of stuff around. Inside, she's packed her swimsuit, pajamas, her stuffed dog, a change of clothes, and Sky's old watch. We have to go home twice before managing to get to her friend's house--once for a hair brush and a toothbrush, and once because I realized the emergency medicine pouch is low on Benadryl. On the drive over, I remind Pink to read labels if she's not sure about food. I tell her to be polite and ask her what she will do if she sees a gun or if someone makes her feel uncomfortable. It's a short drive, so my refresher course on how to stay safe is abbreviated. She asks if she can call me, and I tell her she can in an emergency but that she'll probably be having too much fun to think about it.

When we get to the house, I tell the other mom about the maintenance inhaler and remind her to take the epipen with them wherever they go. The family has a dog and two cats, so I feel like I can see animal fur floating in the air. I imagine stray peanuts on the floor.

"Bye, Pink. Have fun," I say, but she's already gone, her giggles fading in the distance.

I make it until 8:30 p.m. before I check in on her. My biggest worry is the pet dander. I've seen her eyes swell so much that the whites around the pupil seem to bulge, and I'm worried the long-term exposure will trigger an asthma episode. When I text, they are watching a movie in the park, playing with friends from school.

The next day, when I pick her up at noon, Pink has just gotten out of the pool. The other mom tells me she did great, gives me a rundown of all the girls did, starts to tell me about the dog wanting to sleep in the same room as them. In my head, I am finishing this story in a very different way. In my head, the girls start to sleep with the dog, but then Pink's allergies flare, and they have to put the dog in the basement. But, this isn't what the mom is saying, and I don't really register it, until Pink comes over and unzips her backpack. The mom starts to talk about Pink's stuffed animal, and I assume she's going to tell me to wash it because the dog climbed on the bed and slept on it. But then Pink shows me this...

A dog with a hole.

...and starts to cry.

At first, I think it's just this hole, but then I realize the eyes have been gouged out as well. So, I, of course, do what I always do in a difficult situation. I laugh inappropriately.  As I am trying to stifle my laughter (after all, Pink is weeping beside me), I realize that the mom is telling me that their crazy dog has a button fetish. Pink is weeping, and I just want get out of the house before my inappropriate laughter takes over. As I turn to go, however, the mom says, "Oh, are the eyes gone? Bella, go look under your bed and see if you can find them."



I'm simultaneously repulsed and fascinated by this suggestion. Why does the dog chew off the buttons if not to swallow them? And, do I really want to take home half-chewed plastic eyeballs? Before I can resolve any of these questions, Bella shouts, "I found them!" and runs out and places the eyes in my hands.

Dog eyes.

It's hard to get Pink to the car because she is still sobbing convulsively. "That was my FAVORITE stuffed animal!" she exclaims.

"I though Fluffy was your favorite," I reason.

"They're ALL my favorite!" she insists.

Sky, who has waited in the car this whole time, can't decide if he should freak out about the dog cannibalism and the chewed-up eyes or if he should reprimand Pink for insisting on her love for dogs even when a dog has done her so wrong. Pink can't find it in herself to dislike the real dog who ate her stuffed dog, and this lack of logic is too much for Sky. The more animated Sky gets about what he perceives as her irrational love of dogs, the harder Pink cries.

I drive home in silence, not sure what lesson any of us should take away from this experience of Pink's first sleepover. I'm pretty sure Pink will forget about the stuffed animal that fell victim to this attack, and I am also pretty sure she will get invited to sleepovers again. That's what we hope for her, after all, a life of friends and freedom from health worries. I guess the takeaway for both of us, then, is that we can overcome even the biggest unexpected challenges as we seek to make that happen.

Japanese Preschool 2.0

Seven years ago, when we lived in Japan, Sky's Japanese preschool and its amazing teachers went a long way in helping me figure out how to parent Sky at a time when I had no idea how to deal with him. He was not yet diagnosed with autism spectrum disorder, so we had no idea why he was so difficult. The school gave Sky his first positive group experience where he was loved and accepted by his peers (link). The hardest part about leaving Japan back then was taking Sky out of that school.

I'd always wanted to give Pink and Stow the same experience. Not only does sending the kids to preschool in Japan help them make friends, it's also great for their Japanese and helpful in letting them see a whole different approach to early child education (which they might not understand but which I think probably helps them be more open and resilient). For years, I'd been hoping to get back to Japan for a summer when Pink or Stow were the right ages (3-5 years old) to attend the school. This summer, FINALLY, the timing worked.

Stow heading off to his first day of preschool.

It's weird to be given a chance to have seven years of critical distance before returning to an old, familiar, and once significant setting. When Sky was going to the school, life was tough. We  were overwhelmed by his meltdowns, his impulsivity, his inability to follow directions. Many days I dropped him off with tears in my eyes because the 5-block commute to school was so grueling. Most days, I feared the school would call and tell me he had to leave because he was causing so much trouble. (For the record, this NEVER happened in Japan. The teachers were always endlessly patient, always working to figure out how to make school work for him. It did, however, happen to Sky on multiple occasions in more than one school in the US). Sky's Japanese preschool most likely saved us at a time we really needed saving.

Expert commuter.

So much has stayed the same at the preschool over the past seven years. The school uniforms and drop off and pick up routines are the same. Many of the same teachers are there, and they don't seem to have aged a day. I was rusty remembering which things Stow had to take to school when, which days were early pick-up, and  on which days he needed to wear his PE uniform (link). Still, I wasn't nearly as overwhelmed by it all as I was seven years ago.

Fridays are "Sports Day." Doesn't this look like fun?

Some things were A LOT easier. Stow never refused to go to school, always agreeably put on his uniform, and never pulled on my hand or darted away from me. Trips to school on rainy days never resulted in me becoming totally drenched from dumped umbrellas and puddle splashes. The teachers who knew Sky all noted how much easier it was for Stow to make the adjustment.

Rain or shine.

Some things were harder. Stow wasn't at the school long enough to become proficient enough in Japanese to feel confident in his friendships. Though he left each morning excited to go to school, he got tired before the end of the day and often cried to go home. And, since he has allergies and is gluten- and dairy-free, I had to enter the bento wars on a daily basis (link) instead of being able to take advantage of the two days of school lunches the other kids enjoyed.

Much easier to make good bento when you have good ingredients.

Another bento by me.

Ren's bento still look better. I just can't figure it out!

The hardest part this trip was the extended regression Stow seemed to experience while we were in Japan. I'll write more about THAT later, but I do know that the school was most likely not the cause, and that, in all likelihood, our ability to send Stow to school each day made the month easier for everyone.

Saying goodbye on his last day.

It's hard to describe what it's like to find a place that accepts and loves your kids for who they are no matter what their struggles. It's amazing. It's heartwarming. It's an unbelievable relief.

Wouldn't it be great if there were more places like this?

In Which We Discover I May Not Be Losing My Mind After All

After I wrote the post about the near-miss with peanuts (link), I was a little worried that I was starting to lose my mind. With three kids and a recuperating spouse, I can occasionally overlook some of the details. So, I thought that maybe we'd somehow bought a different brand of curry than usual. I mean, a manufacturer doesn't just suddenly change the ingredients of a widely-sold item to include an unnecessary but deadly allergen, right? Right?!?!!

The life-threatening box of curry paste.

I actually dug this out of the trash to prove to myself that the ingredients did indeed include peanuts. Then, I carried this box around with me for a week, as if it was an invaluable piece of evidence that I couldn't let go.

Close-up: See? Peanuts!?!!

Despite what I wrote in the blog, I spent most the last three weeks worrying that we'd simply made a big, almost catastrophic mistake, and I was having trouble getting over it. Living with severe food allergies makes it hard not to beat yourself up and/or be riddled by paranoia, especially after you realize how easily you could have harmed or killed your child with food YOU helped prepare for dinner.

For obvious reasons, I just couldn't let it go. So, Saturday, when we visited our favorite Japanese grocery store, I felt compelled to go down the curry aisle and double check the ingredients of ALL the curry being sold there. 

I don’t know what I expected to find, but I certainly DIDN’T think I’d find THIS. 

It's the same brand and flavor of curry, but look!

No peanuts!!

What the heck?!?!! It’s the SAME brand and flavor of curry as the one that had peanuts in it, BUT, there are no peanuts now! The peanuts somehow magically disappeared. That means that, more than likely, they WEREN'T there when we bought the same product previously.
Which means that just maybe I am not losing my mind after all! 

Phew.

The whole experience has made Ren and me pretty apprehensive about using pre-made curry paste. So, on our last visit to the Japanese grocery store, we bought a can of Japanese curry powder instead. 

I guess you can imagine how the kids responded to Ren's first attempt at homemade allergy-friendly curry...

Homemade GFDF peanut-free curry with Easter egg garnish.

Sky and Stow loved it. Pink? Not so much...

Verbose and largely unnecessary postscript: Yes, from now on, I still plan to read labels religiously, even of things we've bought many times before. But, at least I feel a little better knowing it wasn't just my imagination. Something fishy WAS going on with the curry. And, yes, the curry paste has a little bit of dairy and wheat in it. It's one of the few things we continued to eat post-dietary changes because we weren't able to find a decent substitute, and more importantly, because the kids hadn't had a negative reaction to it-- at least, not until the peanut incident.

Dropping All the Balls

I'm not sure how to break this to you, so I think I'll let this slightly modified transcript of an IM exchange I had with a friend tell my story for me:

ME: At this point, I feel like I'm dropping balls all over the place. I didn't get nearly as much done during break as I wanted. Plus, we almost killed Pink with peanuts. 

(She's fine). 

FRIEND: Oh geez! Peanuts that is. Plenty of time for the other stuff. What happened? 

ME: I preface by saying that Pink ALWAYS complains about dinner and almost always says stuff she doesn't like makes her feel funny. Add to that the fact that Ren has just recently started cooking again, so she's getting a lot of healthy food she doesn't like. And, she never hesitates to tell Ren she doesn't like his cooking. THIS is an ongoing battle with Pink. 

Yesterday, Ren put zucchini in the curry. She said it made her feel funny and refused to eat it. Happens All. The. Time. 

Then she said it stung her throat. Something about the way she described it made me check the ingredients list on the box. The curry we always use seems to have a new formula that now includes PEANUT BUTTER!!! 

For the love of God. Because now Ren's upset because Pink's constant complaining is impossible to read, and he's terrified that he's just done something that hurt her. 

And, we don't know whether to use the epipen or not because she's not really showing any signs of reaction, and she says she's feeling much better now that she knows she doesn't have to eat the zucchini. So, I give her Benadryl, grab her epipen, and put her in the car to go to the immediate care clinic (EDITOR'S NOTE: The immediate care clinic is 5-minutes away and is an ER-level walk-in clinic that is 20 minutes closer to our house than the nearest ER. Calling an ambulance would have taken A LOT longer). 

At the clinic, the nurse said Pink didn't look like she was having an allergic reaction but that I should keep an eye on her through the night because everyone metabolizes differently. So, I slept with her all night to make sure she was ok. 

She was. 

I hate food allergies. 

FRIEND: Geez. Maybe just use curry powder from now on. Holy hell.

*****

Yeah, so, apparently Ren and I inadvertently gave Pink peanut butter just TWO days after our annual visit to the allergist who said we should be especially careful about her peanut allergy since her test results indicate a very severe allergy (despite the fact we've never seen a severe reaction--THANK GOODNESS). My friend was kind enough to say that we shouldn't be too hard on ourselves, but I have struggle with that. I don't think we could've forgiven ourselves if failure to double-check ingredients had caused Pink a serious reaction. It never even occurred to me that something we always eat could suddenly become dangerous.

We still don't really know whether she had a reaction to the curry or not, but we are sure we need to work even harder to help Pink see the importance of not being so hyperbolic. I mean, when a kid has asthma and severe food allergies, we need tom help her figure out other ways to talk about things she doesn't like without saying they make her feel funny. Yesterday, as soon as I told her she didn't have to eat dinner, Pink said she felt all better, even though I hadn't given her the Benadryl, yet. But, when I pressed her, she also said her throat felt like a combination of itchy and bruised (which sounds a lot like an allergic reaction to me). 

So, yeah, I feel like I learned nothing from this day in the life of a kid with food allergies. I mean, I don't know whether Pink ingested peanut butter or not. I don't know whether she had a reaction. I don't know whether I should've used the epi-pen "just to be safe," and I don't quite know how to interpret her hypochondriacal responses to foods she thinks she might not like. 

I do know, however, that I will be reading ingredient lists every dang time from now on.

Stuck

We're at the end of week three post-op, and, really, it's going fine. We are grateful for friends who have brought food and for my parents and Big Sissy who were able to come and help for several days. Thanks to these things and to the fact the surgery was timed to happen between my semesters, this recovery has gone smoother than those before it (*knocking on wood*).

Still, recovery is an awful lot of this:

Healing after such a major surgery is painful. Ren can't bend, twist, or lift for at least 6 weeks, and he can only just barely walk. He can't go anywhere, and since he can't bend, twist, lift or walk, he also can't be left home alone for very long.

In other words, we're kind of stuck. Recovering from major spine surgery, especially when it's not the first (and probably won't be the last) can be pretty frustrating. Nothing can speed things up, and we won't really know how "successful" the surgery was for at least a couple of more months. All we can do is wait.

My lack of control over this situation was starting to get me down, so I decided to look for the bright spots. There are, it turns out, a few positives amidst the drudgery. For one thing, we've saved a lot of money this holiday since we haven't traveled, shopped, or really even eaten out. We've also had plenty of down time to just kinda hang out, so the kids are super chill. Chill kids who entertain themselves are always a bonus!

The best unintended consequence to this winter of being stuck, though, is that I am learning how to just be present for my family like never before. Ever since I became a mom, I feel like I have been running at breakneck speed--to finish my PhD, to move, to get therapies for Sky, to land a tenure-track job, to move again (and again and again), to figure out the kids' allergies, to teach and research well, to write this blog, to get Ren the treatments he needs. These past few weeks feel like the first time I've just had to stop. I've spent hours sitting with Ren and the kids. We've talked. We've watched movies. We've played board games. We've painted pictures. We've done nothing. It's been incredibly frustrating at times, but this new pace makes me realize just how hectic my normal pace really is. I'm starting to realize that learning how to "be" is a pretty important lesson for me and that maybe being stuck isn't such a bad thing after all.

The Saga of the Spine

The first spine surgery happened when the kids were 6, 3 and less than 1 year old. That surgery was supposed to be an easy one--outpatient with a bed, but Ren ended up in the hospital for a week at a facility 90 minutes from our house.

The second surgery was done to repair a newly herniated disc that announced its presence the day before my dissertation defense. We waited the entire summer--first, for the test results and then for the doctor schedule that surgery--eliminating any chance of taking the celebratory post-Ph.D. family vacation we’d been promising the children for what seemed like forever. Ultimately, the second surgery ended up happening the first week of the new academic year, and just over five months after the first one.  Stow was 15 months at the time and still not walking or talking.

When Stow was two, Ren had his third spine surgery three months after we'd packed up everything and moved six hours away from family and friends for my new job. This time, it was a lumbar fusion that kept Ren essentially bedridden for a month and confined to the house for four months. Our new neighbors must've all wondered what happened to us that long cold winter. Did I mention there was record-breaking snow that year? And that Sky wasn't quite tall enough to shovel, yet?

The fourth surgery, a cervical fusion, was the easy one, but by then I'd become so traumatized by so many surgeries that I had a hard time keeping my cool sitting in the waiting room. It turns out there are only so many long surgeries, recovery room stays, and fresh surgery wounds I can handle. That time, I got home at 8:30 p.m., after 8 hours of sitting and waiting, only to discover that Pink was having an asthma episode. I went back to the hospital with her around 10 p.m. and didn’t get home from the ER until 3 in the morning.

The fifth surgery is scheduled to happen four days before Christmas. It’s another lumbar fusion, so the “recovery” will be long. I don’t expect Ren to go out again (except for doctors' appointments) until spring. Fortunately, Sky’s tall enough to help with snow removal now.

*****

When we wrote our own wedding vows, they didn't include the words "in sickness and in health," but the sentiment was certainly implied. Like most people, when we got married, we had every intention of sticking together through thick and through thin. But, I don’t think we imagined a thick and thin that included chronic pain, the loss of mobility, and the inability to parent the kids the way we wanted (not to mention all the stuff going on with the kids with their autism, asthma, and allergies). If you've gone through serious illness or injury with your spouse, you already know what I'm about to tell you, but "in sickness and in health" doesn't prepare you for the sheer trauma of watching your loved one suffer through things you can't change or control or even lessen by the tiniest degree.

When your spouse is down and out, your life gets turned upside down, too. Not only do you have to figure out how to deal with the day-to-day grind down a parent, but you also have to figure out how to support your spouse and help nurse him or her back to health. There isn’t much space for a caregiver to feel sorry for herself/himself when a spouse is struggling to overcome some really hard stuff.  Your only option is to deal with it, find outlets where you can, and keep your cool every time you have to tell a well-meaning inquirer that he's not going to get much better.

I don’t know what happens when you realize that your spouse will never get “back to health.” But, I know that, whether I like it or not, I am going to find out. In the process, I have a feeling I will learn more about myself than I ever wanted to know. I’m just hoping there will also be some moments of intense, if sometimes bittersweet, joy along the way!*






*This blog post is about the spine surgeries. For the record, there were also the shoulder surgeries that happened just before and just after our wedding and the eye surgery that kept Ren from going blind when his retina detatched when Sky was still a baby. The surgery in December will be Ren's 9th major surgery of our marriage.

Longing for October

A week ago, I was gushing over how happy I was to make it through October and into November. But, I TAKE IT ALL BACK. November's not proving to be any better than October was. I mean, it started out innocently enough: Saturday we went trick-or-treating, and Sunday, we went to the harvest festival at a nearby church. But, on Monday, we woke up to a Pink P in breathing distress.

For those of you who don't deal with asthma, let me explain how this works. Pink always takes a "maintenance medicine" that is basically an inhaled corticosteroid. When she is healthy and doesn't seem to be fighting with her allergies (which we treat daily with allergy meds), she is "in the green." Those days, she just takes her maintenance and allergy meds and is on her merry way.

Adult and children's peak flow meters.

On days when she seems to be under the weather or developing a cold, we make sure to check her peak flow rate using a peak flow meter (a hand-held device that measures how well your lungs can expel air). Over the course of several visits to the pulmonologist, we have been able to determine that Pink's "normal" peak flow range is anything over 160. Her "yellow" or warning range is 100-160, and anything under 100 is her danger zone. Without fail, on days when I notice she's getting a cold, her peak flow falls into the yellow, and we have to enact her asthma action plan.

Example of zones with necessary actions. Image from allergybegone.com

Pink's action plan requires us to start using her "emergency inhaler" (albuterol) when she's in the yellow in order to get the asthma under control. When Pink is in the yellow zone, she gets this every four hours while she's awake. Normally, now that we know the signs, we're able to give her a few doses of her emergency medication and get her symptoms under control. So, that's good.

The trouble is that sometimes we have days like last Monday. When Pink went to bed on Sunday, she had a bit of nasal congestion but no signs of any kinds of respiratory issues. When she woke up on Monday, though, she was clearly struggling with her asthma. Her peak flow rate was well into the red at 75 and her pulse ox was down to 94. We gave her the emergency inhaler and waited to see how she responded. Because the flare she was having seemed pretty bad, we followed that with a dose of the albuterol through her nebulizer. Thankfully, after the second treatment, she was back into the green (pulse ox 99%) and feeling fine, so we sent her to school with a note for her teacher and the school nurse to keep a close eye on her.

I didn't hear from the nurse until 2:15 p.m. By that time, I was convinced that Pink's asthma episode had been triggered by the smoke from the bonfire at the harvest festival. While we didn't go anywhere near the fire, the smoke from it blew straight from the church's lot into our neighborhood, filling the air with a thick haze. Pink wasn't in the smoke that long--just long enough for us to walk from our house to the other side of the church--and she seemed fine when she went to sleep, but given how fast the episode came on, I'm sure that was trigger. The school nurse called right before putting Pink on the bus home to let me know she was coughing. (For Pink, the cough is our biggest initial clue that she's having a full-on asthma attack.) I was puzzled as to what might have triggered the cough at school until the nurse told me that someone was burning leaves at a house next to the playground. [I foresee two letter rants, coming soon to a blog near you: "Dear Local Church with Your Stupid Bonfire" (Sky wants to call it "How Can You Call Yourself Life Church When You're Trying to Kill My Sister?") and "Dear Person Burning Leaves Instead of Bagging Them."]

#childhoodasthmasucks

When Pink got home, she still seemed okay, but we followed through with another albuterol nebulizer treatment. Within an hour, she needed another one, so I called the pulmonologist because when the emergency medicine starts not to work, you have call the pulmonologist. I got through to his nurse just before they left for the day, and they told me to take her to the ER. Well, techincally, they told me to wait 20 minutes, give her another albuterol treatment, and if that didn't work, take her to the ER, but when we get to that stage, I know what's coming next.

So, while Pink had her fourth treatment in less than 2 hours, I started getting our stuff ready for a hospital stay. The nearest hospital is 20 minutes away, and I didn't want Ren to have to drag the boys out to the hospital in the middle of the night to bring clothes to us.

When we got to the ER, the guy at check-in told me the wait could be over three hours, but when the triage lady saw Pink, she got her into a room stat! Pink's pulse ox was at 92% despite five back-to-back treatments (the pulmonologist told me to give her 2 extra puffs on the inhaler to hold her over for the ride). By this time, Pink was experiencing retractions, her nostrils were flaring, and she was panting as if she'd just run a 100 meter dash. They did what they always do at the ER--gave her a double shot of asthma meds and a dose of prednisone. And, once her pulse ox seemed to be holding at about 96%, they sent us home.

The next morning, she woke up deeper in the red than she'd been the day before. We decided to keep her home from school and watch her. I went to work to try to get a few things done before the inevitable trip back to the hospital. It looked briefly like the meds might work, but 90 minutes later, we were on our way to the ER again. Pink was finally admitted around 2 pm (or approximately 5 hours after we got to the ER for the second time).

The number that matters. When the oxygen saturation level is below 95, it's time to start worrying.

Honestly, the only thing they can do in the hospital that we can't do well at home is constantly monitor her vital signs. After 36 hours of not being able to get the asthma under control, I was glad they were keeping her for observation, even if it meant a sleepless night starting at this monitor while lying on the most uncomfortable reclining chair on the planet. Because she was on so much albuterol, Pink's heart rate was off the charts, and despite all the meds, she still spent a night hovering at 92% oxygen saturation. For the record, it's really hard not to obsess about that number when you're lying awake next to your kid in the hospital.

Here's the thing about asthma attacks: they don't look like you expect them to and once they start, sometimes there is very little you can do to stop them. With Pink, the attacks come on very subtly and sometimes very unexpectedly. She never comes to us gasping for air. There is never any drama. In fact, we have to be really paying attention to realize what is happening. The first time she had an asthma attack, we made her go through the entire night struggling to breath, and by the next morning, she could barely stand. When Ren got her to the ER, her pulse ox was 89%, and she had to stay for three nights. (That's still my worst parenting moment ever, even though I know I didn't know any better.) Now, I'd like to believe we are pretty vigilant. Even so, despite our best efforts, there are still attacks that get ahead of us and just can't be stopped.

After a night in the hospital and her third dose of prednisone, Pink finally turned the corner, and 50 hours after it started, we were home and life was back to "normal." I wish I could end here with a pithy quote or some kind of sage advice, but these asthma episodes are terrifying. So, mostly this November has started by reminding me that childhood asthma really, really sucks. Oh, and, that parenting isn't for the weak at heart.