Wednesday, February 25, 2015

Unhinged

Just when I think I've got a handle on all the craziness in our lives, we end up in the hospital with a major asthma flare.


Pink P hasn't had an asthma episode for over TWO years. In fact, her asthma has been so well-controlled that she has been off of her maintenance medicine for months and months, and she almost NEVER uses her emergency meds. I mean, I still send the emergency inhaler and talk to her teachers about it at the start of every school year, but I kinda thought we were done with asthma.

HA!

Hahahahahahahahahahaha!

HA!

Only, it's not terribly funny. It's not funny to be awakened at 1 in the morning by a kid who says she can't breathe. It's not funny to be so tired (from the lack of sleep caused by daily 4 a.m. wake- up calls from a three year-old) that you don't really register how serious the symptoms are. It's not funny that once you understand what's happening all the interventions seem to work (if only briefly) until suddenly none of them are working. That moment during the asthma flare when you realize that you're not going get ahead of it no matter what you do and that you have to go the the ER? That moment sucks. And, what's worse is when people at the ER finally get the pulse ox monitor on her finger, and you realize her O2 levels are hovering around 90%. It's not funny watching your child breathing so hard it looks like she's just run a 440. Worse is watching her do it for HOURS until all the medication finally kicks in.

It turns out that Pink P's asthma is not gone nor is it being well controlled like we thought. Luckily, she was only in the hospital for a night, and every day her lung function seems to be improving. But, I am going to have to start worrying about Pink's asthma again, and I am not sure I can manage the worry.

See, we have a lot going on on a daily basis. Some days Ren can't walk. We don't know when or if his back might get better (though we kind of assume it won't). Sky and Stow still very much struggle with sensory and communication issues that make chaos part of our daily lives. Sky gets picked on by kids who don't know him and makes some colossally bad decisions when he fails to read non-verbal cues or to properly interpret what is being said to him. Pink P still has a peanut allergy. And asthma.

There are so many things over which we ultimately have very little control, and I deal those things and the fears they can cause by tidying them away in a tiny compartment in my head (I imagine it as a kind of treasure chest with a very large skeleton key for the lock). This is how I function. I know that worrying about what I can't control will only make me crazy, so I deal with what I can and try not to dwell on what I can't.

But then we have days like last Friday, when one of those contained fears blows off the hinges and bursts out of the box demanding to be acknowledged.

We've all been a bit traumatized by Pink's hospitalization. None of us expected it, and it has reminded all of us of the many things we have to be afraid of. Yesterday, through tears, Pink told me she wished we could go back in time when "life was better" and "all these bad things didn't happen to us." I'm the parent, so I said what I was supposed to -- that our family is awesome and that we have the strength to overcome these challenges, that there are all sorts of neat things going on now and that there is a lot to look forward to in the future. But, I said it fighting back tears myself because in a lot of ways, she's right. It's not fair. This stuff is hard for anyone and especially for kids.

Over the next few days, I'm sure I'll figure out how to repair the hinges and get all of my worries back into the box. The kids' anxieties will fade, and we will get back to the hum that is the chaos of our daily lives. I don't know if that's right, or healthy, or good.** I can tell you this, though. Life is hard. Helping kids process the hard stuff is even harder. All we can do is keep getting up in the morning and believing that we will find the strength and grace to face whatever the day throws at us, knowing that when we fail we still have tomorrow to try again.





**Our family therapist seems to think we're doing okay, so I'm going to go with that.

Tuesday, February 17, 2015

Holding Out for a Hero


Sometimes, all you can do is wear your Iron Man socks. You know, on those days when you went to bed at 11:30 only to be awakened an hour later by a spouse who ate too much fan food at the hockey game and who really needs you to dig out the Pepto Bismol. Only, you're not sure it's the fried food that did it to him, and now you find yourself lying awake, tossing and turning because your washing machine just died, and the new one won't arrive for at least two more days. And you're sure you jinxed yourself when you joked earlier in the evening about how the absolute worst thing that could happen right now (I mean besides having to plunk down an unplanned-for chunk of change on a new washer) was for the stomach flu to rip through the household.

Being awakened by a queasy spouse at 12:30 wouldn't be so bad except that you have your alarm set for 3 am because you know you have at least two more hours of prep to do and are hoping to squeeze it in before all three kids are awake at 5. And, as you lie there wondering whether your spouse has the stomach flu, you also wonder how you always seem to find yourself in this position on Sunday night--you know, the one in which you really don't have time to sleep. But then remember how you've resolved to give the kids your undivided attention on Saturdays and Sundays because you know it's important to them--and to you--no matter how much other stuff you have to do.  The problem is that no matter how hard you try to get ahead during the week, you invariably find yourself spending hours answering e-mails, corresponding with the kids' teachers, trouble-shooting with the school nurse on the phone (like right now as I am writing this post), or taking kids to and from therapy appointments, music lessons, and a sundry of other extracurricular things that seem to pop up out of nowhere (though, really, we all know it was on the calendar and you simply forgot to look at it).



The night before the Iron Man socks, I slept about 3 hours (Fitbit tends to count my 3-in-the-morning reading time as sleep). My middle-of-the-night reading session morphed into an early-morning potty-run-snuggle-fest-and-breakfast session with a certain three year-old. I'm sure I could be stricter with my "free time" and improve my organizational skills, possibly even getting some more z's in the process. But, I'm not sure how to do it while also being fully involved in both work and home life. So, until I figure it out, I will do the next best thing:



Buy more superhero socks.


Friday, February 13, 2015

Roses are Red, Violets are Blue...

Phew. It looks like we're going to survive another Valentine's Day. Now that Stow is in school, all three kids had to take cards, which, of course, meant that we spent a few afternoons/evenings signing cards and attaching trinkets. Pink decided to hand make all of her cards, so two Saturdays ago I walked in to the kitchen at 6 a.m. to find Sky and Pink doing this:


Now that (2 out of 3 of) the kids can write the names on the cards by themselves, this whole Valentine's thing doesn't seem so bad. None of our endeavors reach Pinterest-level creativity, but Pink's cards were heartfelt and full of her personality. Plus, making the cards kept Pink and Sky working together peacefully for close to two hours. I argue that teamwork is WAAAAY better than Pinterest any time.

Sky's teacher suggested that instead of just signing their cards, the kids could write something nice about each of their classmates. At first, this was hard for Sky. For the kids who are his friends, he wrote, "You are my friend." But, for the rest of the class, he was at a loss. I suggested he point out something they do well, so he moved on to things like, "You're good at geography" or "You are fast in math." We might not have gotten beyond the simple declarative statement of fact, but at least he put his heart into it.

When Sky brought his cards home today, it was touching to see what the other kids had written. There was a consistency to their comments that was kind of reassuring. Most of them wrote things like, "you're a good artist" or "you're a good translator" or "you're good at Japanese" or "you're really funny." One girl, who seemed equally as stymied as Sky, wrote, "I like your glasses."


I know it seems corny, but I am really glad his teacher had them write messages on the cards. Sky's been getting bullied on the school bus for the past few weeks. We're on top of it, and the principal has worked with us to come up with some pretty inventive solutions that simultaneously empower Sky while also eliminating much of the problem. But, being told you have no friends or being called "weird" or "freak" can be heartbreaking, especially for a boy who tries so hard but often falls short when trying to fit in with his peers. And, when that boy happens to be both literal and unable to decipher social cues, it helps a lot to have physical proof that the kids in his class really kinda like him.

I look forward to the day when Sky no longer worries about what the other kids think, but I know we are still years from that point. Until then, we will keep doing what his classmates did--pointing out how awesome he is and doing our best to make him believe us. 

*****

The real Valentine's Day miracle might be this:


Ren bought flowers. 

Ren and I are famously unromantic. In fact, I'm not sure I even like flowers. But, I do really appreciate the gesture, especially because I know that Ren watched the sale flyers for a week or two looking for the best deal and that he made sure to get cash so he could make a quick run to Aldi to pick them up while I got the kids through their homework. I laughed when Ren handed the flowers to me, and said, with a completely straight face, "Here, these should last for at least another 10 years."

I can wait for 10 years. I can wait for a hundred. See, Ren doesn't need to get me flowers. I already know how much he loves me. I see it when he gets up at 4 a.m. to take Stow potty or washes vomit-stained sheets in the middle of the night. I see it when he insists I take two slices of apple with me as I rush out the door to work, or when he sits hunched over the kitchen sink peeling carrots for curry. I see it when he reorganizes the pantry or refrigerator so we can actually find things. I see it when I get home from work to find a sledding slope made of well-packed snow--surrounded by kids' shovels and sleds and a riding toy or two--in the backyard. 

Roses? They wither and fade. But the 10,000 tiny acts of perseverance, hard work, and kindness Ren shows day in and day out? Those are the things that will stick with us forever.