Category Archives: Liam

Feel the breeze.

If you follow me on twitter or Instagram then you’ve already seen this picture but I just wanted to put this one here for safe keeping.

Liam likes to close his eyes if he feels a breeze. He was wide awake for this one waiting to get inside before school started.

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Trach – A film by Sean Devin and Jose Cota

Hard to believe that we filmed this almost exactly two years ago, and yet it also feels like it could have been ten. Two years ago we opened our home to a film crew for a documentary being filmed highlighting the day to day life of three families with trached children. Not long after separate sections of the film were being shown to respiratory therapists and nurses and other pediatric health care professionals in training rounds about families bringing home medical technologies with their children. I already blogged about that cut of the film of only Liam’s footage here.

Even if you’ve watched that version, please, please, please take the time (14 minutes) to watch the completed film: Trach by Sean Devin and Jose Cota. The footage stitched together with the stories of Liam, Corinna, and Alia. The filmmakers did a wonderful job putting it together, and I am so very proud to have been a part of it. We’d like to thank the Ventilator Integration Program of Hasbro Children’s Hospital for thinking of us as a family worth representing our special needs community. And also to thank Sean and Jose for capturing and communicating what life at home with a child and a trach can be like.

 

We didn’t even know it had been finished until a respiratory therapist at the hospital where I work, and a few facebook messages to Karin from some nurses at our favorite children’s hospital had all trickled in on the same day. They had seen a film with Liam in it! I’m still not even sure where it was first shared or used but it’s out there now and I am happy that it is.

My only notes on the film are One- that it irks me to hear myself refer to Liam as “the Patient” in one sequence but you have to understand it was a teaching moment and we were trying to speak universally, and Two – that Liam was pretty good in the movie but for our part the star of the show really ended up being our cat Calvin making his film debut at about 13:05 and really hamming it up for the cameras.

Damn cat.

 

Playing Hookie

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We didn’t even tell him. Got him dressed and packed into his wheelchair. We even left the house at the same time that he does every day for school, but Liam didn’t go to school yesterday. I had the day off of work, and the weather was right.

Yesterday, we all went to the zoo.

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We’ve of course been to the zoo before but we were excited to go during school hours in the hopes that the zoo would be fairly quiet. It was, but not nearly as empty as we expected. Still, we were able to enjoy every exhibit at our own pace and didn’t have to battle through other groups to get Liam right up close, with only a minimal amount of the uncomfortable stares (sadly enough, they’re usually from the other parents more than the children).

There was one animal though, that I was more excited to show Liam up close and personal for the first time than any other, and I knew that no matter the feeding schedule or the weather, this animal would be available for Liam to meet.

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If you grew up in Rhode Island, chances are there is a picture somewhere in your parent’s old photo albums of you proudly astride the dog in front of the gift shop at the Roger Williams Park Zoo. I know for a fact that there are pictures of me on this thing along with my siblings and cousins. When we decided on letting Liam play hookie to head to the zoo getting to take this photograph was the first thing on my mind.

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Having the time to unhook Liam’s ventilator, feeding pump and oximeter, safely lift him onto the dog’s back and then have the picture taken? Well, that right there was more a more meaningful experience in Liam’s life than one more afternoon in a classroom could possibly bring, and I don’t care what his report card says about it.

Liam’s bedtime friends.

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Pictured from bottom to top

Pulse oximeter probe

Plastic tubing from Nebulizer

Power cord for oximeter

Power cord for ventilator

Power cord for in-line humidifier

Power cord for nebulizer

The Circuit

Feeding tube

Power cord for feeding pump

Power cord for suction rig

Suction tubing

Dirty rug. No really, go ahead and tell me how dirty it is. It’s bad enough that Karin is going to kill me for posting this. Try me.

People often ask us how we do what we do.

Very carefully.

Me? I pretty much consider it a success anytime we don’t trip on something.

 

Not just a pretty face

Like most parents of 5-year-old children we get a lot of arts and crafts projects sent home in Liam’s backpack. Most of them obviously the result of “hand over hand” writing and crafting. That’s ok with us. We came to grips early in Liam’s life that he wasn’t going to be making us any crafts or writing us any letters.

We picked Liam up from school about fifteen minutes early on friday so that we could take him to a doctor’s appointment. Liam’s nurse barely had him out of the doorway when he started he shouting at me. “He did such great work today! He worked so hard! Wait until I show you what he did in class today!” Liam’s nurse is not the most excitable gentleman you’re likely to meet and so the enthusiasm was evidence in and of itself of the importance of what we are about to see.

I can’t tell you how much class work we end up finding ourselves when going through Liam’s backpack long after his nurse has gone home from the day. Not only did he want to show us this work, he started showing Karin and I this page in the van, before we even had the tie-downs on his wheelchair secure.

“It started with this worksheet.” He told Karin and I while we secured Liam’s wheelchair. “He was doing some hand over hand on numbers until he did this number one all by himself!”

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“That’s when [Liam's teacher] got really excited and ran to get some more paper. She wanted to see how far she could push him and the only support she gave was to keep her hand at his elbow so his arm would stay on the table and not fall off.” He was speaking faster than usual now “The marker stayed in his hand on his own and he moved his wrist and hand on his own.”  That’s when he pulled it out of the bag to show us.

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From left to right. 1…2…3…4…5.

You might not see it. and you know what, I’ll admit that the 4 might be a bit of a stretch but it looks pretty damn good to me.

It’s things like this that Karin and I wish we could show to every doctor and resident who saw fit to tell us everything that Liam wouldn’t do. Everything that he’d never accomplish. Everything that’d be impossible for him to learn.

Because as a close friend who also is a parent of a child with some special needs often tells us — Everything is possible — the impossible just takes longer.

*****

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Liam and his best buddy W, the nurse I mention above. The photos are selfies that W has taken and shared with us. It would be a HIPAA violation for him to share them in any other way. But not if I do.

How Liam taught me to love The Bruins.

Maybe it’s the nonstop action. Back and forth so quickly and smoothly. Given Liam’s compromised vision though, I think it’s the contrast. Dark sweaters against a field of white. Hockey is the only sport Liam seems to enjoy watching. In person or on television it’s hockey that is the only sport that can come close to holding Liam’s attention for any length of time.

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Even after my uncle took me to see the team he coached when I was very young I didn’t really catch the hockey bug. When I was in the fifth grade a new neighbor moved in with a kid a year younger than me who loved hockey. We played street hockey in front of our houses over the next few years. I was aware of Ray Bourque, and Cam Neely and Andy Moog but even then I never really watched hockey on TV and once that neighbor’s kid moved away to live with his mother the hockey part of my life came to an end.

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A short burst of action followed by celebration and preparation to do it all over again, baseball and football are far to complex for Liam to understand. The variety of camera shots from field to sideline to close-up it’s all just too much to keep connected. Hockey is broadcast differently and the white background of the ice makes it that much more interesting for Liam’s ability to understand and find enjoyment from. You can see his eyes follow the action, something that he normally doesn’t do with any screen larger than his ipad. When Karin and I cheer a goal Liam will start waving his arms. A definite sign that he’s having fun. Watching the Bruins has quickly become our favorite family activity.

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To know me is to know of my lifelong passion for baseball and the Red Sox. Baseball has always been my game and although I’d definitely call myself a Patriots fan, football has always been a part-time thing for me. One afternoon a week and just a small distraction to get me through winter. Last year that all changed. Last year, Karin on a whim, she’s never told me if she ever had a reason, turned on the Boston Bruins hockey game before I got home from work one night. I came home a few minutes before the puck dropped and it was instantly apparent that Liam was interested in what was going on up there on the television screen. A rare occasion as I’ve already told you.

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The first period I just had to try to remember some of the rules and I will admit that I had to look up online this new hybrid icing call that I didn’t remember (apparently it didn’t exist when I was a kid) but I managed to get back up to speed fairly quickly. I had no idea of the strategy or plays that I was seeing but I knew what the penalties were at least. In the second period the Bruins scored. Not understanding what led up to it, the goal seemed to come from out of nowhere. Of course now I know the value of looking for triangles and getting pucks in deep and throwing pucks and bodies toward the goal to give yourself great rebound chances but at the time it looked more like a bit of luck than anything.

I literally jumped out of my seat and screamed while throwing my hands in the air. Anyone who has watched a Red Sox playoff game with can tell you how loud that I can be. With baseball, a game I played, a game I understand even the smallest nuances of, shouts come from anger, shouts come from frustration, shouts come from happiness and excitement. I have no idea where the shout of joy that Bruins goal gave me came from. Turning towards Liam and already apologizing to him I expected to see him fearful or recoiling from my sudden outburst. Instead I saw a smile and him flapping his arms like wings. A Liam sign of excitement. He could tell that mom and dad were happy.

It was in that moment that I became hooked.

We didn’t miss a single game for the rest of the season last year (about three more weeks of regular season play). Didn’t miss any of the playoffs either. Not a single game.

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In the 16 games that the patriots (a team I have been a fan of all my life) have played this season I think I missed 4 of them. In the 42 games that the Bruins (A team I’ve been a fan of for about a year) have played this season I have missed 4 periods of play or the equivalent of a game and a third. An overzealous convert for sure I know what we in sports fandom call this. Fairweather fan, or pink hat (a particularly misogynistic local one) and with the Bruins going all the way to the Stanley Cup Finals last year, I suppose that’s exactly what I am.

I really don’t care.

All I care about is how big the smile on Liam’s face grows when he sees his Mom and Dad jump out of our seats high-fiving and screaming our happiness every time A bruins player finds the back of the net.

In the past year I have become obsessed with the Boston Bruins.

It’s really just an offshoot of being a fan of Liam.

 

 

Five years

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Today is Liam’s 5th birthday.

Fifth.

I don’t have any words.

I have all the feels. I have a whole bunch of happy tears. I have more pride in my little fighter than I thought humanly possible.

My Big Boy.

My five year old son.

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How the hell did that happen?

Christmas Eve 2013

Merry happy and all that jazz. Hope you’re able to spend these days with the people you love.

I know we’re going to.

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#tbt

Over on Twitter (@pressuresupport) and Instagram (Pressuresupport) Throwback Thursdays or #TBT is for posting pictures of yourself from the past. I don’t think I’ve ever taken part, but over the weekend I pulled out the old Nikon to take some photos for my dad and I found a memory card that I hadn’t used in close to five years. 

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In the last few weeks of Liam’s five and a half month NICU stay we were allowed to book a “family room” for up to 12 hours to spend the day away from the nurses and the other patients of the bay system unit. We would invite family to visit so they could hold Liam away from the noise and stress of the bay. More often than not Karin and I would take turns taking naps with Liam in our arms. We would watch movies and take pictures and started learning what it was going to feel like being a family at home.

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Here we are. Almost 5 years ago. The memory card was chock full of good shots so in the coming weeks leading up to Liam’s fifth I’ll throw back on Thursdays to a time of innocence. A time of naive confidence. A time without a single grey hair in my beard.

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Looking back on these, even though we had already been through so much; we had no idea what we were in for.

Still don’t.

Learner’s Permit

Liam has never crawled across the room to check out something shiny that caught his eye.

He’s never darted away down the grocery aisle for whatever the reason is that children dart away down the grocery aisle. To Play, or investigate, to explore.

In that crawl or the sudden sprint by a child lies a level of communication that we have never gotten to see from Liam. To see where he wants to go. To learn what catches his eye. To discover where his interests lie.

Last year the timeline was three to four years. Over the summer, after improvements in making choices and showing an awareness of his surroundings that timeline was adjusted.

“He’s ready. At least ready to try it. Let’s see where he takes it.” I was shocked when his PT said it after a particularly good session with his speech therapist and her assortment of switches. “Let’s get him one to practice with in the fall and see.” All of the sudden three years turned into three months and the possibility of a whole new world. A new freedom. A new way to explore. A new way to show us what he wants.

Look out world. Last week Liam got his Learner’s Permit and a smoking hot set of wheels. Just a loaner from the wheelchair company for now, and he only uses at school while we get seat and support measurements to learn what will work best for Liam when the time comes to get him his own model. I’m thinking flames on the side right?

Liam also went to his first professional hockey game last week when we took him to see the Providence Bruins game. Liam absolutely loved it, and someday when he’s using those switches to drive the Zamboni at the Providence Bruins games we’ll look back at this footage as the start of it all.

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