Wednesday, December 16, 2015

Deja vu

FB Memories has been messing we me again. Yesterday, the day after Ren's surgery, this memory popped up:

Sky's three wishes from fall 2014.
Apparently, a year ago, Sky was wishing his dad's spine would get better and that our overall stress level would decline (I wrote a post about this here). As I was wandering the halls of the hospital two days ago (a.k.a. a day before this FB memory appeared), waiting for Ren to get through surgery and thinking about just about everything under the sun, I came across a wall of artwork drawn by children from a local middle school. Their artwork, created to cheer up the poor souls in the hospital, made me think about our kids and about how they will never be able to think about a hospital without remembering the many surgeries Ren has had.

Looking at those pictures, I realized that most of the young artists had probably never had a family member in the hospital or never had to have their parents taken away from them for long periods of time due to injury, illness, or major surgery. They have probably never been told to cut it out because Daddy can't get out of bed today and Mommy can't handle everything unless they start pulling their own load. They probably haven't cried about the days of old when Daddy could carry them and let them ride on his back playing horsey.

Generally, I preach acceptance and joy to the kids. I tell them that we are lucky because we have each other and that we have hope because of our faith. I help them focus on the positive while acknowledging that some of this really stinks! But, when I looked at those works of art, it hit me that these spine surgeries and Ren's increasing lack of mobility will most likely be a defining, if not THE defining, event in their lives.

As parents, we all know that there are hurts from which we can't fully shield our kids. As a parent with a spouse experiencing significant health issues, I've learned that there is also no way to make life completely "normal" for our three young ones. Multiple times in the last four years, I've left them with sitters, friends, or relatives so that I can go keep vigil while their father has surgery. We've dragged them to appointments with a multitude of specialists as we try to get to the bottom of Ren's issues. We even left them with their grandparents for 10 days, so we could make the trek to Mayo Clinic. All of these times, we've tried to be upbeat and to keep their routines as routine as possible. But, they've had to learn some really hard lessons really young: Moms and dads aren't invincible. Sometimes it seems like God isn't hearing our prayers. Life isn't fair.

On Monday night, when I got home after 12 hours in the hospital with Ren, I found the kids asleep and this Pink P creation on my desk:

"Dear mom how is daddy?"
Pink worries about her dad. She wants to know he's okay. When he's gone, she mourns his absence, even when I explain it will be just for a few days. All of my kids feel the stress of these surgeries and the subsequent imperfect recoveries. And, despite their amazing resilience, I know they have all lost a little something along the way.

I've learned not to pray that my kids won't experience pain or hardship. Instead, I hope for them a life full of joy no matter what the situation. I hope for them people who love and accept them. I hope for them the words to express how they're feeling and a way through the hard times that perfectly suits each of them. And, I hope for them to discover new paths in their relationships with Ren, so that no matter what happens with the spine, these momentary sorrows will be overshadowed by so many more years of joy and happiness.

Tuesday, December 15, 2015

The Imperfect Art of Waiting

Ren's fifth spine surgery is in the books! This last one, like the lumbar surgeries before it, was loooooong.

If there is something as needlessly exhausting as sitting in a hospital waiting room, I don't know what it is. The chairs are never comfortable, and the room is usually crowded with strangers who come, wait, and then leave sooner than I do. Plus, invariably, Ren's surgeries go an hour or more longer than anticipated by the surgeon, and he takes FOREVER in recovery. The waiting can seem eternal.

The cruel (but helpful) monitor that helped me track Ren's progress.
I've tried a number of strategies for making the waiting seem more finite and less tedious. I've charged up all my batteries and saved a line-up of films and programs to watch on my iPad. I've had friends come sit with me. I've left for a couple of hours to shop or eat a meal. This go around, I added Christmas card completion and the publishing of copious posts to social media (sorry, everyone!) to my distraction tool kit. Regular text updates to family and friends, including a spirited exchange about whether one of us needed this super large Christmas tree ornament from HomeGoods, also kept me busier than previous surgeries.

We decided that neither of us needed this monstrosity.
All of these strategies work to a point. I mean, no matter what I am doing, I am plagued by a nagging sense that things are definitely not right. And, if I am having anything resembling a pleasant experience, I feel guilty to boot. Besides, none of my time-killing efforts ever seem to do me any good past the five-hour mark.

The guilt-inducing Thai curry that I had for lunch while Ren was in surgery.
Watching TV for five hours is exhausting, and since the hospital waiting room is an awkward social space, I run out of things to talk about with friends and family who occasionally come to sit with me. After a complicated surgery, it's important to be there when the surgeon comes out at the end to give me the low-down, so even if I go out, I can never leave the hospital for longer than a couple of hours.

Yesterday, Ren's surgery started at 11:30 a.m., so I got back to the hospital at 2:30 pm. The doctor had told me he thought the surgery would last for four hours, and 2:30 was at the 3 hour mark. At that point, I hadn't watched any movies or addressed any Christmas card envelopes, so I thought I was on good pace to keep myself properly occupied for the entire surgery time. But, then the nurse liaison found me at 3:15 and told me there was at least another hour to go (putting total surgery time at as long as 5 hours). No amount of planning helps me get through the anxiety that sets in when I realize the surgery is going to go an hour longer than the surgeon's longest estimate. So, I did what anyone in my situation would do. I started watching old Dateline murder mystery episodes.

Waiting with bad TV.
Ren came out of surgery at 4:10, so technically the surgery lasted ONLY 40 minutes longer than the doctor expected. When I met with the surgeon, he was amazed by how much nerve impingement and damage there was in Ren's spine but also optimistic that the surgery should provide some relief. He also told me that I'd need to wait another two hours until Ren was out of recovery and that he anticipates Ren will need a full spine fusion in the next 5 to 10 years. So you know, the good, the bad, the ugly.

Two and a half hours later, or 9 hours after we parted in pre-op, I saw Ren again in his hospital room. The re-meeting is always bittersweet. Seeing him covered in gauze and hooked up to drains and wires, I'm always struck but just how much struggle lies ahead. He, on the other hand, is loopy on meds overly effusive. Plus, his English achieves a whole new level of proficiency. Of course, he never remembers anything we talk about when the anesthetic is wearing off. Ever.

Did I do anything helpful during my long day of waiting? No. Did my presence wandering the halls of the hospital, watching bad TV in the waiting room, and drinking weak tea in the cafeteria make any kind of difference? No. Still, I was there, and I sent him in and saw him through to the other side of yet another major surgery. Maybe next time (spine surgery #6 and major surgery #10) I'll figure out a way to feel less like I am trapped in limbo. Suggestions welcome!

Friday, December 11, 2015

Sensory Bins on Steroids

Every year about this time, you know, when the weather turns cold, and I start to contemplate being trapped in the house for hours with stir crazy kids in the midst of an eternal winter break, I write a post about sensory bins (click here for the 2014 one or here for the 2013 one). You might call my sensory bin obsession a compulsion (albeit, a compulsion brought about by the real fear that the cooped-up kids might finally get the best of me). It's not like we don't use the bins in the summer months. We still do, but, for a number of reasons, they get a lot more play once the weather turns cold and the leaves fall off the trees. In the crush that is the birthday-Thanksgiving-birthday-semester end-Christmas combo, I do a lot of my shopping online. This is especially true when Ren is down and out with his back. This year, two online impulse purchases (they were SO cheap, I couldn't resist) have added hours of new life to our old sensory bins.  First, I found a set of 16 very cheap-looking Star Wars figurines on sale for 50% off, and I decided to throw the set into my cart at the last minute thinking they would be just enough to reinvigorate the Star Wars bin.

I had no idea how well this would work. Since I put the new figurines into the old bin, Stow has played with them practically nonstop. No, really. Take a look:

Old Star Wars sensory bin with new Star Wars characters added.
Day 1, 7:30 pm
Day 2, 6:30 am
Day 2, 8:40 am
Day 2, 1 pm
Day 2, 7 pm
Day 3, 7:15 am
Day 3, 3 pm
Day 3, 8 pm
I could keep going, but I think you get the point. Stow is obsessed with this thing. He asks for the bin the first thing in the morning and goes back to it all day long. He even invites his siblings and Ren and I to play with him (though I still haven't figured out how to be the good guys without making him mad). 

At about the same time I bought the Star Wars guys, I also bought a "Mystery Pack" of 10 Schleich figurines, again for more than half off. With three kids of varied interests, I figured there would be at 3 or 4 things in the pack that at least one of them would like. When the package arrived, I found this inside:
The biggest most unnecessary fairy tree ever.

Needless to say, I was kind of miffed. Where were my 10 unique figurines, and what in the world was I going to do with such an excessively large tree?!?!  I tucked it into my closet and tripped over it for several days as I waited for an opportunity to pass it on to someone who might actually like and use it. Halfway through day 2 of Stow's Star Wars bin obsession, however, I decided to give the tree and the old fairy sensory bin to Pink, just to see what would happen. 

Big-a** tree + fairy box = hours of fun.

Day 2

It turns out the fairy trees are pretty cool, especially if you already have a box full of fairy stuff. Pink is not as obsessed as Stow is, but she's been engaged with the sensory bin on and off for two days now, too. My favorite times have been when the Star Wars guys and the fairy guys get together to fight the forces of evil from the fairy tree.  

The moral of this story is a universal one, I think:
When making impulse buys, sometimes you will get an unexpected fairy tree that takes up half your living room. That's okay, though, because it is worth it just for a few hours of uninterrupted, cooperative play. 
No? Not universal enough? Okay, how about this one?:
Impulse buys are stupid even if they sometimes work out in the end. 
You know what? Forget it. You just take from my story whatever you will. I have a feeling that's what you've been doing all along anyway!

Wednesday, December 9, 2015

'Tis the Season...

Our advent wreath
For the last couple of weeks, the kids and I have been observing advent. We've talked about how it is a time of waiting but also one in which we celebrate the "coming" or "arrival" of Jesus. Each candle we light reminds us of the hope, peace, joy, and love that we celebrate at Christmas time. Generally, the kids get all squirmy when we're having these talks and just want me to hurry up to the part where one of them gets to light a candle and we all say a prayer before they scatter in different directions, but I am glad we've started this new tradition. The weekly lighting of the candles been a nice way to slow down and get them to focus on what Christmas means.

Besides the wreath, we've also been keeping up with our usual traditions: each day, the kids jockey over whose turn it is to do the advent calendar. And, all three of them were excited to hang their 2015 ornaments as the first ones on our tree again this year.

Even our host student from Japan got in on the act.
Our playlists are set permanently to Christmas music. The gifts are bought (but not wrapped), the holiday cards have been ordered (but not sent), and I've got the teachers' gifts sorted out! We've even had our first (and hopefully last) snow of the season.

On our way to 16 inches. Fortunately, it all melted within a week.
In other words, things are going about as we'd expect them to in the weeks leading up to Christmas.

There's one major difference, though. This advent season, we're doing another kind of waiting. We're waiting for the imminent arrival of lumbar fusion number two. Ironically, we find ourselves preparing for it in the same way we might prepare for the arrival of a new baby. We're cramming in a lot of last-minute doctors' appointments. We're making sure there are people to help take care of the kids and that we have enough food. We're negotiating the details of how we will handle the shift in the household division of labor. And, we are waiting with not a little apprehension to see just what life will be like after this particular arrival.

The message of advent--of the anxious anticipation for this baby who would bring hope, peace, joy, and love--has taken on a very different meaning for me this year. Our lives will surely be different once Ren has the surgery, whether it be for a few months or forever. Being able to meditate on the meaning of this advent season has helped me to keep my focus on the positives--a co-worker who set up a Meal Train account that was filled almost immediately; offers of help from people I never even thought to ask; kids who have suddenly become unnaturally cooperative; two raffle wins in the same day (for gift certificates to multiple local restaurants)--instead of dwelling on all the negative. All I know for sure is that a very big and very long surgery will take place five days from now. As for the rest of it, I'm going to focus on the hope, peace, joy and love of advent and let everything else work itself out.

Friday, December 4, 2015

In Which an Old Post Reminds Me of Some Eternal Truths

Today Facebook took me back to this day in history in 2009. That was the day when Sky's private preschool sent home a note telling us that he couldn't go on the school field trip to choose a Christmas tree unless I, his mother, accompanied him. The school, which was closely tied to the college where I was teaching, knew that I worked full time. They also knew that Sky's dad was our stay-at-home parent. Surely, no one was stupid enough to put something so sexist and potentially racist in writing, I thought. This was the question I asked my FB friends in the post that popped up on my wall today.

To try to understand what the note could possibly mean, I scheduled an appointment to talk with the head of the school. Surprisingly, she actually WAS being both sexist and racist. She didn't realize it, of course. But when she said, "Sky might just respond better to you on the trip than he does to his dad" and "Sometimes we feel like we can't communicate as clearly with Ren as we can with you," I tried to imagine a situation in which she would send a note to a family telling them their child couldn't go unless his dad would take the day off accompany him or a situation in which she would tell any other family in the school that communication was difficult. I couldn't imagine it, though. We were being triply marginalized--for having a difficult child, for being a non-stay-at-home-mom family, and for (some of us) not speaking English as well as a native speaker--and it broke my heart.

Sky was my first kid, so it took me a little longer than it should have to realize that private school was not the place for him. I really wanted it to work and felt more upset about taking him out of the chaotic, child-driven, project-oriented school than I ever should have. This was pre-diagnosis, though, so I try to cut myself some slack. Learning how to parent any child takes time, and it takes just a little longer if your kid is on the autism spectrum.

Facebook's time hop reminded me to tell you this: It will be okay. Go with your gut. If a place doesn't seem right for your child, it probably isn't, no matter how good it looks on paper. The road is long, and it can seem daunting at times; just take things one step at a time, and eventually you'll find yourself some place pretty darn good.

Today, six years later, Sky is thriving in a public school a few miles from our house. His teachers and IEP support team are Ah-Mazing. Not only is he mainstreamed in honors classes, but he loves going to school. Most importantly, though, he has friends and a true sense that his quirkiness is A-OK because there are people around (usually hiding so far back into the wings that he can't even see them) who understand where he's coming from and accept him just as he is.

Monday, November 16, 2015

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.

Tuesday, November 10, 2015

Letters from the Edge (November 2015 Version)

Dear People Who Burn Leaves Instead of Bagging Them,

Stop. Just stop. The air has been hazy with smoke for weeks now. I know there's a legal burning season, and that this is it, but, why not just pay a couple of bucks for the lawn bags at Ace Hardware,  fill them, and put them on the curb? The yard waste collection service here is pretty efficient, and you'll be surprised at how much those bags hold! And, heck, given the money we'd save by avoiding the ER and asthma-related hospitalizations, I'll even buy the bags for you.


Your neighbor

I contemplated enlarging this and hanging copies of it all over town, but then I decided it would be too mortifying for my kids and we don't want to move again any time soon.


Dear Local Church with Your Stupid Bonfire (Alternate title: How Can You Have "Life" in Your Name When You Tried to Kill My Sister?),

As your close neighbors to the east, my family and I have appreciated the many different ways you've engaged with our community. The various events you host each year seem intent out reaching out to a wide audience, and as a fellow Christian and church-goer, I appreciate your church's clear commitment to making a positive difference.

Today I write to ask that you reconsider your use of bonfires during your various fall events given the church's close proximity to a residential neighborhood. The bonfire you had on Sunday filled our yard, and even our garage, with a thick layer of smoke that triggered an asthmatic reaction in my 7 year-old daughter that will most likely result in an ER visit and possibly a hospital stay. I get that bonfires are exciting and fun, not to mention warm on a cold fall evening, but they also make it nearly impossible for children like my daughter to breathe. In the future, we hope that you will think about foregoing the bonfire or at least holding in on the opposite side of your campus so that houses like ours aren't so heavily impacted by the smoke.

Thank you for your consideration,


This one, I actually did send, last Monday, when Pink was starting to look like she might be on the downhill slide. I haven't heard back from them. I hope they respond because Sky just can't abide by the irony that a Christian organization would do something to harm people in its community, and I'm getting tired of hearing about it.


Dear Second Grade Teacher,

I think it's great that your class will be singing for an all school assembly for Veteran's Day, I really do! But, I wonder if you might be able to send a note home about this next time? In it, I'd love it if you could tell me ahead of time that my daughter will need to wear something that is red, white, and blue, AND that has pockets. When I get a text about this at 8 p.m. the night before, I'm kind of stuck, especially in November when it's hard to buy patriotic cold weather wear. I mean, we have a couple of great red, white, and blue sundresses left over from the Fourth of July holiday that still kind of fit, and one of them even has stars on it. They don't have pockets, though, and apparently that's a deal breaker since Pink needs to be able to pull out a streamer and wave it at the end. When you put me on the spot like this, our options are limited: I could send Pink to school in her blue and red Japanese national soccer team jersey (though I don't know how the WWII veterans will feel about the Japanese flag placed prominently on the front of it). Or, I could send her in this (spoiler alert--I DID send her in this):

You could argue that a patriotic Hello Kitty isn't much better than the national soccer jersey for a former war enemy, but at least I didn't send her in hot pink as a close approximation to red (like we debated doing). Hopefully in the future, school-home communication won't depend on those last-minute mass text messages!

Oh, and I do love patriotic music, but it creeps me out every time I hear my little girl sing--
If tomorrow all the things were gone
I worked for all my life
And I had to start again
With just my children and my wife
--especially when she dips down into the low register and holds out the word wiiiiiiiiiiiiife. Thanks, by the way, for getting that song stuck in my head for days! It turns out there are all kinds of awkward moments in which you can find yourself humming it at work. Maybe next year you could just go with "God Bless America" instead.



I actually really love the kids' school, so I didn't send this letter. Given the stress of the past month or so, though, I couldn't resist writing it in my head (and then feeling compelled to put it on the blog).

Sunday, November 8, 2015

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
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."]

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.

Sunday, November 1, 2015

Remember October 2015

And suddenly it’s November 1st. The kids have been up and asking questions since 5 a.m. because, you know, Daylight Savings Time (All those people thrilled to “gain” an hour at the end of Daylight Savings Time, probably didn’t get to enjoy an extra pre-dawn hour of kids playing loudly and asking about Halloween candy every five minutes). Still, I'm glad to be to November!

The good news, I guess, is that I am learning to roll with the punches after a very hairy month of October. It started in late September, actually, when Ren was suddenly hospitalized for a week. He’s okay now: meaning, he’s out of the hospital. The less-than-good news is that the ongoing health issues related primarily to the spine problems are really no closer to being resolved. To say it’s frustrating doesn’t even come close conveying how our lives are impacted by all of this, and since I haven’t figured out a way to put a positive spin on it, most times I choose not to write anything (one reason for some extended silences—sorry!).

Six days after Ren came out of the hospital, I left for a 10-day trip to Japan. I love going to Japan and taking students on field excursions and meeting with folks at our exchange partners, and it IS getting easier for Ren to manage the kids while I am away. Still, ten days is a long time to single parent. And, with the added variables of bad back, food allergies, and sensory issues, ten days can seem like eternity.

Sky carving his first pumpkin.
Into this mix came Halloween. Halloween has traditionally been the beginning of the behavioral downhill slide that leads to the new year. Kids with sensory processing and social skills issues don’t handle change in routine well, and nothing kills routine like Halloween, birthday, Thanksgiving, birthday, Christmas, and New Year’s at 2-week (or less) intervals. I’ve come to dread Halloween and what it represents in terms of the falling-apartness of our lives. 

Besides the disruption to routine, there are also the food allergies. Halloween, Thanksgiving, and Christmas are not terribly conducive for kids who are gluten, dairy, nut, and everything else free, and the end result tends to be a lot more cooking/food buying by me. This year, for example, for class Halloween parties,  I sent separate bags of allergy-friendly candy to each class so none of the kids felt left out. I don't mind doing this, but the logistics can be hard as I have to communicate with each teacher in advance, buy enough of the right kinds of candy, and get it to each school and classroom on time. I also have to remind each teacher that each kid has his/her own candy AND, in the case of Stow anyway, go to the class during the party to make sure that all of the other parents have some of his candy to give especially to him.

Halloween also offers the added challenge of costumes--costumes that go on bodies that may or may not be able to handle the extra sensory input or the uncertainty of so many people not looking like themselves. Last year, Sky had a very public meltdown about the fact that he’d forgotten the gloves to his costume, and when he ran back to the house to look for them, he was too panicked to be able to find them. Worse, the rest of the group (which consisted of about every kid in the neighborhood) had continued trick-or-treating without him, and he was a) too nervous to go to the houses he’d missed alone, and b) unwilling to miss those houses. That year, he had to quit after three houses. Two years ago, I paid $30+ for a cardboard Minecraft head and pixelated sword only to have Sky refuse to wear all of it, and when I saw him at the school Halloween parade (which I’d left work early and parked about a mile away and walked to see), he skulked behind his classmates with his hands jammed into his pockets and his eyes to the ground. Halloween can be really hard, you guys.

This year, miraculously, everyone wore their costumes and made it all the way up and down the street before agreeing that they had gotten more than enough candy. Sure, there were hiccups. Even though I explained that we could do a candy swap once we were home, for example, Stow had a hard time not announcing to every house that, “We can’t eat that. We’re allergic to peanuts and chocolate!” And, he struggled a lot with impulse control once he had a bucket-full of candy. All things considered, though, this year went MUCH better than any year previous.

Personal victory: I managed to put two buns into Pink's hair making her look like a pretty convincing Princess Leia (I mean, if you don't count the fact she's wearing cowgirl boots).
In other words, October turned out okay. The hospitalization, the trip to Japan, and even Halloween, everything went fine. Maybe this is a sign that the rest of the November-December gauntlet will be okay, too. I don’t know, but  I’m working on chilling out and accepting that some parts of our life probably aren’t going to get any easier but other parts may well surprise me and be amazing.

Thursday, October 15, 2015

My Lame Non-existent Travel Blog

I've been traveling in Japan for the past week, so I've got a few good bad English shirts for you. The shop was crowded, and my rental cell phone refused any attempts to set the camera shutter sound to silent. This meant my photo opportunities were quite limited. I suppose this is great practice for our new reality, though. After all, Stow is four now, so soon, there will be no one to carry on the good bad English tradition for me. Once he learns to read, the probability of me getting a kid to wear one of my bad English acquisitions out of the house drops down to zero. I hope you enjoy these. They might be your last!
I hear a voice of the delight.

Wildly peaceful mind...It's your turn to shine. Futuristic.

Chain stitch. The world sea is lucky luck.

Good round pace step...
The English is okay, but that's way too optimistic for this early in the morning.
I don't know. You tell me.

A rational and ritzy kid.

These pants are a party in the front, and...
...a party in the back. I'm so happy lucky!
Since our good bad English time is limited, I've been toying with the idea of showing you actual pictures from my trips. If I did that, they'd include things like this:
Kiyomizu Temple in Kyoto
Or, this...
Kyoto skyline...
Or, even this....
Leaves changing at Kodai Temple
But, the thought of putting together a travel blog of the famous sites of Kyoto or Tokyo bores me. Besides, I hate throngs of tourists and all the famous stuff shows up in travel guides, anyway.

So, instead, here's a little glimpse of how I spend my kid-free time in Japan. 

Mostly, I go to books stores. Lots and lots of bookstores. 

But, I also have some favorite places to hang out and window shop. In Kyoto, it's Nishiki Market, a traditional marketplace that has been running in one form or another for 400 years. Here are some of the sights I saw as I walked through this morning. 
A fabric shop selling fabric for obi.
Tamago-yaki (rolled egg) shop.
The only place to go for all your fried fish cake needs.
Knife shop that's popular with tourist because they engrave their high quality knives with any name you choose. It's popular with me because it's been around for over 400 years, and they claim to have made knives back before the samurai were tamed.
Tourists getting their knives carved.
Fish flakes.
All of these shops are pretty cool, but none of them have my heart like the pickle shop does. If I could figure out a way to keep them refrigerated for the long trip home, I'd have a whole suitcase full of these:

Unfortunately, I can't take any pickles back with me. No worries, though! I spent most of my morning sampling. Mmmmm...