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Liam the Ninja and his new Belt. 

Editors note: Look I didn’t mean to take nearly 6 months off of regular blogging. It just kind of happened. But I’m back now. I mean it, but before I get to any of the cool new stuff I want to blog about I have to tell you this story first. Because it is an awesome story, and also because I should have posted it last October right when it happened. So let’s just move past the fact that I haven’t yet posted in 2015 mmmkay? thanks.

 

 

We almost didn’t make it to see Walter at all. (You’ve heard me talk about Walter in my speech here) The President was visiting Rhode Island for the first time in a generation that night, and with most of the exits off the highway between providence and the airport in Warwick manned by state troopers, and traffic at a near stand still for the evening, we were 25 minutes into the drive and still less than 5 miles away from our house, and close to 10 miles away from our destination. Karin floated the idea out there.

“I’ll just text Walter that we aren’t going to make it. This is nuts, it’s going to be over before we even make it there.” She said.

“No, Walter has been talking about this for months. We have to make it.” I said through gritted teeth and clenched jaw as my frustration at the interstate becoming a parking lot grew. “It obviously means so much to him, we have to make sure Liam makes it there.”

After ten years of teaching karate, Walter, Liam’s nurse for the past 4 years, had asked if we would bring Liam to the final class of his closing dojo. We were happy to be a part of it for Walter. Happy that it meant so much to Walter that Liam attend, but we had no idea why Walter wanted him to be there, and why he was so excited that we promised to be there. It wasn’t much of a choice really, after Walter had attended so many of our own family events, birthday parties, thanksgiving dinners, and milestones like first days of school, it was now Liam’s turn to be at something that meant so much to his big buddy Walter. Our full-time nurse, and part-time ninja.

“You made it!” Walter couldn’t have been more excited when he saw us wheel Liam into the room. About 25 students of all ages, in their Gis, kicking and punching in an impressive display for their family and friends around the room, while we tried to sneak in along the wall and take a place in the back so as not to distract from Walter’s night.

Walter wouldn’t have it though, and only a few minutes after we got settled the sensei addressed his students for the last time. A few minutes in to an already emotional speech Walter started telling the whole room about his patient and buddy Mr. Liam.

 

I don’t remember where Walter was going with the start of “it’s unfortunate … ” before the video cuts out but just know that it was incredibly sweet and inspiring words about Liam’s strength and determination. And then, in what was a total surprise to Karin and I, Walter presented Liam with his honorary Black Belt.  Embroidered with Liam The Lion Olson and a certificate in Japanese and everything.

Yes that’s right, ‘In recognition of his perserverance and indomitable spirit fighting the odds, and proving that nothing is impossible with hard work and the support of others’ (according to the translation side of the certificate) Karin and I are now the proud parents of a black belt, and we were blown away by the kidness. It was just Liam’s nurse Walter deciding to do something nice. Something he didn’t have to do at all. Something that still means the world to us.

For the remainder of the evening all of the students from children to adults in the class would make their way up to Liam to meet him. Every one of them bowing and calling him ‘sir’ as he was a black belt now, a title worthy of respect, while Karin and I, blown away by such a generous gesture and the incredible speech that Walter gave about Liam’s strength and determination, tried to figure out how we would ever be able to thank Walter and his entire family for such an evening.

An evening we almost didn’t even make it to.

I’m so glad that we did.

Thank you again Walter, Amy and the all the kids. You guys rock and Liam is a lucky kid to have you all in his life

 

 

Bringing Home Technology — Liam’s Film Debut

If you follow my twitter feed (@pressuresupport) then you know that we had a weird day yesterday. Weird in a good way, but weird nonetheless. It’s not everyday you get to see yourself on a big screen, in a short film, shown in front of an audience. Weird.

You may remember that back in March a film crew came to the house to interview and film us for a short film about families that have children at home on medical technology. Vent families. The film will be used in different training uses for staff of the hospital and with families facing the prospect of going home with medical equipment. Yesterday was our first chance to see the movie.  Along with the two other movies showcasing two other families it was screened for the Pediatric Nursing Grand Rounds. By my count there were about 40 people in attendance from two hospitals,  along with representatives from at least one nursing company and the biggest local medical equipment company.

The three short films (Which will ultimately be edited together into one bigger film) were interspersed with presentations from hospital staff on this month’s topic which was the importance of standardizing the training and educating of parents and caregivers for children going home with medical equipment. The films being just a small part in a very large and worthwhile project that involves countless staff across many different institutions. Having gone through this training ourselves before this effort to standardize the training Karin and I know first hand how important this project is. We feel humbled and honored in being asked to be a part of it. I’d like to thank Jerilyn Devin, the coordinator for the Ventilator Integration Program for thinking of us when looking for participating families.

After the meeting Karin and I were approached by a few hospital administrators and department managers letting us know that they would also be showing the films at their staff meetings. Reminding their own staff of the day-to-day home life that families like ours encounter. That’s pretty cool too. The movies were definitely well received. I even got a few laughs.

All of the videography and production of the movie was done by Sean Devin and Jose Cota Jr. This is their film, and I thank them for being gracious enough to get me a copy of the file and the permission to post it here. They did an amazing job. They took hours and hours of footage and managed to whittle them down to seven and a half minutes that I feel accurately represent the day-to-day life of our home with Liam’s medical technology. The little details that they chose to include made me so happy to see, including the footage of Karin wiping Liam’s face. Anyone who has met us in person can tell you that to spend time with Liam is to spend time wiping his face. Drooly kid, that boy.

I would have loved it if the footage of us outside our house was shot during a beautiful summer day with the lush blooms of all of my yard work but that isn’t something that anybody had any control over. The amount of work and planning and forethought that went into making these movies humbles me greatly about my meager late night typing here. It also would have been cool to not tie Liam into a knot with his circuit while nervously changing his trach in front of a lighting set-up and two cameras but overall I think we did a pretty good job fooling people into thinking that we know what we are talking about.

Besides, I think we can all agree, the show was essentially stolen by our cat Calvin anyway.

*****Because I am ridiculously proud of the discipline, and hard work she has done to accomplish this, and also because I am fairly certain (since she told me) that she wants anyone who hasn’t seen her lately to know, I’m just going to mention here that Karin has lost 35 pounds since this filming. You’re amazing H.B.