parenting

The games we play. 



Liam doesn’t go in for most game-play. Games that require speech, coordination, or mobility just aren’t Liam’s thing. But eye contact with daddy? That Liam knows very well, and since he’s been old enough to swing his head from one side to the other we have played our own game.



We start facing in opposite directions until either one decides to swing all the way around to smile at the other. Wait too long and don’t meet his eye at the right moment? Well no smile for you and we swing our heads back around to start over. Synchronize head swings and meet in the middle at the same time? Well then you get the prize of Liam’s joy. 



We’ve been playing this game most of Liam’s life, but tonight’s match when I got home from work was a real barn burner. 

We both won. 

Tired.

About 12 hours from this writing will mark 8 days since Liam has used bottled oxygen. That’s the longest he’s ever gone without O2 in his lifetime.

Last Thursday was Liam’s 4th IEP. Talk of kindergarten and adapted physical education. Goals, therapies, benchmarks and progress reports.

Spring is happening and the hops are poking out of the ground.

In just the last week there been so much going on that I should be blogging.

But I’m tired.

Though no one’s fault at all, circumstances left us without a nurse for the past week as well. I’m not going to explain all the little things that changes for us and our routine because, again, I’m tired. Karin and I are more than capable of taking care of Liam without nursing, (Although, while I am positive that Karin would be just fine doing this without me around, the opposite is so far from true. I’d be lost) round the clock care without any breaks will wear you down.

So while I’d love to blog about oxygen, IEP’s, and the need for us to learn to trust more nurses (in case our favorites can’t work), I’m tired. Liam seems to be asleep, and Netflix now has some Green Lantern cartoons that I can watch until 4am when Karin will get up and I get to go to bed. Watching cartoons is easier than blogging and like I keep saying.

I’m tired.

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Liam’s Mom Won’t Take Any Sick Days.

Were it Liam who needed to rush to the emergency room at 4am Saturday morning we would have known exactly what to do.  The movements choreographed, decisions made in seconds. Even in the most stressful of times a calmness of knowing what to do takes over. Were it Liam.

When it is one of us though, things go a little wonky.

So when Karin came downstairs at 4am, which is our time to switch posts anyway, with a swollen puffy face it took more discussion than it should have before she left to get treated in the emergency room. We both knew she needed to go. Niether of us wanted to say it out loud. knowing what we know about E.R.’s we both knew what she was in for once she got there. Hours and hours of waiting in a waiting room, before hours and hours of waiting in an exam room. Admitting desk, nurse, resident, attending, repeat your symptoms and the timeline again. Karin’s run this drill before.

Only this time…do it alone.

It isn’t as if she didn’t think she needed to be treated or that she was too scared of all of that, no it was that if she left to be treated who would take care of us. Absent the fever Karin was showing signs of a major infection in her face but she was more concerned with how I would get any sleep before work once she left. Who would do Liam’s trach care in the morning? Who would be the mom, should the mom get admitted to the hospital?

Thank God it didn’t come to that. 8 hours after walking in the hospital, after a battery of tests and x-rays, an IV antibiotic and a handful of prescriptions later Karin came home with the answers. A pocket abscess. An infection growing at the base of an old root canal. Had she hesitated to go get it checked out who knows where the infection could have spread. Bloodstream, eye, brain or airway, we know a thing or two about infections in this house. We know about sepsis. We know what could have been.

This morning, five days after this whole ordeal began, and two days after she had met with a trauma dentist (a title I had never heard of before), Karin saw the oral surgeon and had the procedure to clear out the infection. The pain she has endured all week now threefold. Swelling, which had receded with the antibiotics, now back with a vengence thanks to the cutting through gums and drilling through bone.

Given the same I would be curled up in a ball. She did laundry.

Try as I might to get her to stay in bed all night to rest she insisted on taking her “shift” so that I could sleep before work.

She is incredible.

Unbelievable.

And amazing.

I’m sure she thinks I can take care of Liam by myself if I had to — but she’ll be damned if she’s ever gonna let me prove it.

I didn’t do it by myself though. I called in some favors. Liam’s nurse enjoying a day off with his family responded to my text immediately and was willing to come and be with Liam so that I could go to get karin at the hospital if I needed to (she drove herself home because she didn’t want to bother anyone). My mom came to sit with Liam so Karin could get some sleep and I could go to work. Karin’s mom came up to take her to the oral surgeon so that I could go to work today as well.

I didn’t do it by myself.

How much do you want to bet that if it were me in the E.R. that Karin would have though?

Well that’s a suckers bet. You don’t ever want to bet against my wife.

******

In the time since I’ve posted last we’ve had a super-hero themed birthday party for a five year old. I’ve been approached to give a presentation to a hospital bio-ethics committee and to be the keynote speaker at a conference on former NICU families this summer. We’ve even painted our living room which is significant only in the fact that it’s the most “moved in” to this house we have gotten since we bought it while Liam was in the NICU. Every one of those things could have made a great blog post but have gone unmarked. Longtime readers will know — tales of hospitals, E.R.’s, and illnesses?
Well that’s just what I do best around here.

Membership Has its Privileges

Occasionally I’ll read a tweet or overhear a “typical” parent discussing a legitimate and “normal” worry or complaint. ( I hate both terms typical and normal since we’re all just parents and what in any of our lives is actually “normal” or “typical” but you catch my meaning more efficiently by using them so that’s what I’ll go with here) A worry or complaint that Karin and I have never had to worry about with Liam. It always gets me thinking of all the bright sides, all the silver linings in the clouds of special needs parenting.

At first I thought about how we never have to wait when we end up in the E.R. (it’s amazing how bringing in a kid hooked up to a ventilator can bump you to the front of the line) or the fact that the pulmonologist, neurologist, and pediatrician will write us a script based solely on a phone call since they know us so well we don’t have to come in to be seen first. But while both of those could in a weird way be considered benefits, what other parent would ever be jealous of things like that? Having the top pediatric surgeons in the state know you on sight isn’t all it’s cracked up to be.

No, instead I’m talking about benefits that will help me feel better when I hear other parents talking about “date nights” knowing that they probably don’t have to involve nursing agencies and insurance companies to get a babysitter. Benefits to think about and comfort my own jealousy over parents who get to sleep in the same bed together more than one or two nights a week.

So I  thought about all the good parts. All of the concerns I’ve heard mentioned that my family doesn’t have to give a second thought to (yet.)

The privileges. These are not worries that I am making fun of at all. Parents absolutely should be worrying about these things. Lucky for us, Karin and I just don’t need to.

1. Baby-proofing — This is the one I heard mention of today that got me thinking about this post in the first place. Liam was born so early we hadn’t even thought of baby-proofing our house yet. By the time we got home from the NICU we had a pretty good idea that we wouldn’t need to. Liam can’t crawl, he can’t grab, hell thanks to the trach he can’t even swallow and so the electrical outlets in my walls are free of little plastic covers to lose or be stepped on. My kitchen and bathroom cabinets, even the ones on the floor, open with a quick flick of the wrist. I can even keep the scotch right out on the counter. (just kidding, I keep that on top of the fridge where Karin can’t reach it. That whiskey is mine!)

2. Story Time. —  Look I love children’s books. The more of them I read the more I find new ones that are so clever or funny and who doesn’t love revisiting the classics of our own childhood’s but I’m willing to bet that I made my parents read Grover’s “Monster at the End of This Book” a million times.  Over, and over, and over again, the poor things. During the daytime and at school Liam hears his fair share of kids books and stories but at bedtime when I get to read him to sleep I get to read my own stuff. It’s all about tone of voice anyway so instead of more Seuss and Silverstein, Liam and I read aloud Vonnegut, and Gaiman, Cherie Priest, and Adam Christopher, Terry Pratchett and Harlan Ellison. And everything else that I find at the library. Liam is very well read for a three-year old.

3. Potty Mouth — I swear a lot. I always have and I always find it funny when we all censor ourselves and politely substitute benign words or start spelling things around our kids. My parents swore around me growing up but I definitely knew there were a bunch of words out there that I wasn’t allowed to say until I grew up. Let’s face it if or when Liam utters his first word if it happens to be shit or another of the four letter variety (it’s not an unheard of occurrence in my family) I would laugh and cry and celebrate that wonderful curse for the rest of my days.

4. The Back of the Milk Carton — I don’t mean to be insensitive about something so serious but kidnapping or abduction? It’s not really a concern of ours. Hard to steal a child securely attached to a 40 pound ventilator and 50 pound wheelchair.

5. So You Want to Go See a Show? — Sure Karin and I don’t get out for a date night very often but I’ll tell you where else we don’t end up. “Disney on Ice”, “Dora the Explorer Live!”, “The Spongebob Squarepants Live Screech-a-Long” or “Raffi’s Two Hour Children Screaming Extravaganza”. I’m sure that every kid in every one of those audiences is having a wonderful time waving their light-up novelty toys and yelling their adorable little heads off. Not so sure about the adults in those same rooms though. Luckily Liam’s not a very big fan of crowds or loud noises. So when he gets just a little older and bigger I’m sure we’ll take him to one of these shows just to say we have but I’ll bet you dollars to doughnuts that he shuts down and sleeps through the entire performance.

6. Open Up the Hanger Here Comes the Airplane — The tricks other parents must have to resort to in order to get a three-year old to choke down enough carrots and peas without spitting it all over themselves or their high chairs is beyond me. Instead I put exactly the amount of formula for the calories that Liam needs in a bag and set the rate on his feeding pump. Boom! consistent nutrition and growth at the press of a button. Can’t beat that with a rubber ended spoon of Gerber Beef and Gravy.

Well there’s a quick list of six and while there may be more I think I’ll end it there before I have all of my “typical” parent readers running out looking for their very own special needs child.  I don’t want to start having to worry about number 4 on the list anytime soon.