Full disclosure, If you follow me on Instagram (pressuresupport) or Twitter (@pressuresupport) you’ve probably already seen most of this, But this way, you can see it again all in one place.
I guess I just picked the wrong year to fall off of my blogging game, because Liam’s 6th year has been a pretty good one.
As you may recall the northeast got buried under record amounts of snow this year. Here in Rhode Island we got clobbered. I usually don’t mind the snow but in 2015 I anticipated the spring in ways I have never looked forward to a season in the past. Liam agreed.
So the year started out a little rough, but as we always we do, we trudged through it, and made it to the good parts. Let’s be honest, no year is going to be perfect, and we’ll never be able to look back on a time period as long as six months of Liam’s life without a bit of medical drama. All things considered, the first 6 months of 2015 were pretty good in that regard, with only a few blips along the way.
Blip the first was when Liam’s physical therapist thought there may be something a little hinky going on with Liam’s shoulder and recommended we see the orthopedist. Which we did, making sure we got in there as soon as we could. The orthopedist, realizing he hadn’t done a full workup of films on Liam in a long while ordered the works instead of just his arms and shoulders. It seemed like a good idea, so we agreed to get a bunch of extra x-rays while we were there.
You see? I never stopped thinking like a blogger. Who but a special needs parenting blogger takes a picture of his son getting the x’ray work up?
The films came back quickly and we got the news that afternoon over the phone. Liam’s shoulders are both completely fine.
His hips however are both dislocated.
Naturally. They grew that way, and although the shock of hearing it had me very worried for a little while, this is far from uncommon for children with muscle tone issues like his syndrome presents. Liam is showing no signs of any pain or discomfort, which is why the diagnosis came as such a shock. In fact unless he shows us otherwise, because there’s no sign of pain or circulation issues, because he can still use his stander and his walker, and because his spine is straight as an arrow, there’s really nothing to be done about it anyway. Liam will just live with a couple of naturally dislocated hips. Add it to the list.
He’s still a rock star.
Dislocated hips? Don’t care, I’m still walking.
Medical blip the second, a short hospital stay for a bout with pneumonia. Just one of those things that happens, and a chance for Liam to visit with and show off for all the doctors, nurses, and therapists at the Hasbro Children’s Hospital PICU that he hadn’t seen in so long.
Yes other than that Liam stayed away from the hopsital for the most part this year. And it showed, because being 6 years old has been a year for Liam to be where he belongs. Out and about and in the community.
This year, beginning in January, once the school was finally set up to handle Liam’s needs with the wheelchair lift finally installed, and his teacher and the classroom aides really getting to know how to effectively communicate with Liam, he really started excelling in kindergarten. With reports of improvement in all sorts of areas, including the making of paper ducks.
But like any kindergartner, Liam enjoyed the special days more than any. Like when a turtle came to visit the class.
And “Take a Special Friend to School” Day, where someone very special got to spend the afternoon with Liam and his whole class for an afternoon. Recess was my favorite part!
Or on field day where Liam and his nurse/ninja/best buddy Walter competed in the three-legged (and two wheel) race.
Outside of school things were just as good this year. If you’ve followed me for very long at all you know just how much the Roger Williams Park Zoo in Providence RI means to us and to Liam. This year has seen no change to that. In fact this spring when strolling the place we were stopped more than once by Zoo staff who knew and recognized him as Liam! the boy who named Anton.
When Liam goes to his hometown zoo. He gets treated like a rock star.
But not only by the people there.
Liam has fans of all kinds at Roger Williams Zoo.
Dream Night this year was fantastic as it always is. I didn’t take as many photos though, I was having too much fun just taking it all in.
And so was Liam.
But it wasn’t only when out in the community that Liam had a great year. He had some good times at home too.
Like on his swing in his own backyard.
Or showing off for his mom and I when using his head switch to utilize the communication apps on his ipad to answer yes and no questions.
And as much as Liam likes working with his ipad, he’s an old soul and still loves the feel of a good old fashioned book. So a gift of books directly from the artist and writer himself (who went to school at RISD with Liam’s Grampa, my dad) was an especially exciting treat. Thanks Aaron!!
Not as big a treat as hanging out with Dad in the driveway while brewing a new batch of beer using Olson & Son Hopyard hops though.
Liam is an exceptional assistant brewer.
But the thing with being around Liam is that there is an aura of joy that follows him, not only during special events or during treats. There is a joy just being around him just resting on the couch or going for a walk around the block.
There was a time when fathers would keep pictures of their kids in their wallets to share with co-workers friends and anyone who would listen. Today we have Twitter and Instagram, facebook and our blogs for that, and here’s mine. While on my blogging hiatus I heard from so many of you who wanted to hear about how Liam was doing and missed seeing his pictures. I’m sorry about that. Along with more essay posts about parenting a child with complex medical needs, I forget how many people just like seeing Liam’s smile.
I won’t forget that again.
Here, have one more smile at the end.
Like I said, the first 6 months of 2015 have been pretty good so far. Let’s hope it keeps up, and if it doesn’t, as long as I get to see that smile every now and again, we’ll get through whatever this year can throw at us.