Wednesday, February 25, 2015


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.




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.


Katie said...

Ugh. :( I have several chronic illnesses that are random and obnoxious... and the worst part is when my daughter tells me she wishes I wasn't always sick so we could do more things. :(

I'm just glad her asthma appears to have gone away... but of course reading this post has now totally freaked me out...! We don't even have medicine of any kind for her anymore. (In fact, I took her to the ER a few years ago thinking she was having an asthma attack, but it was just a bowel obstruction that was pushing on her diaphragm. Heh. heh. Ugh.)

Honestly, to deal with my kids' issues, I just decided I wasn't going to let other people have control so I homeschool them. It has its own set of crazy and challenges, but at least it's not at the whims of school people who may or may not understand or care.

Mom on the Edge said...

Fortunately, the kids' school is ah-mazing about dealing with this kind of stuff, so I don't worry too much about things being mishandled there...I guess the PSA is that you should keep up-to-date meds on hand just in case of a future flare. At least, that's one thing I take away from this.

AYo said...

Must be so hard! You are doing so amazingly well handling all of these things. You're a good mom and your kids will be ok--they know they have a great mom who will do anything to help them. My love to you--I don't comment often but I read your blog. I have two seemingly neurotypical daughters (a 3 year old and a 3 month old) but we have our own stressors regarding health (my mom is terminally ill with nonsmoking lung cancer). I see your grace under pressure and I hope to emulate it. I'm also super impressed by how you travel with three kids and a husband who can sometimes not walk. You are awesome!