Let’s Go Fly a Kite

I remember flying a kite as a kid. I also remember crying when inevitably the string would snap, or the kite would get stuck in a tree. So even though I don’t remember kite flying being the most fun I’ve ever had, it was something that all kids do.


Or so I thought.


So when Karin mentioned over breakfast that she had never flown a kite before, our plan for the day changed.

mom and liam

Karin and Liam were both going to fly a kite for the first time in their lives. I on the other hand, and without expecting to, was going to have more fun doing a basic childhood activity than I thought would be possible.


liam kite flying

And that’s just what we did. Getting these awesome photos was just an added bonus.

Family kite flying

Don’t worry. I’ll still get to the highlights of 2015 post.  Today was just too much fun NOT to post about.

Somewhere in the Swamps of Jersey

Ok, not the swamps, instead the rolling hills of northwest New Jersey but if you think I’m not going to quote The Boss when talking about our trip to Jersey well then you just don’t know me at all.

Yes the Olson’s packed it all up and headed south for adventure. When I say packed IT ALL up, I mean it. It makes little difference if we are going camping or visiting family in their home, the packing remains the same. 2 days or 2 weeks and there’s little difference to the list. A CVS, across the street from a Walgreens next to a Target a short walk from where we’re staying? Ha! find me syringes, feeding tube bags, ventilator circuits, or  nebulizer parts on any of their shelves and I’ll eat my hat. No, the whole kit and caboodle needs to make the trip when we travel.


Actually, make that the whole kit and caboodle . . . times two. Because ventilators malfunction. Ventilator batteries lose their juice. Electrical chords and plastic oxygen tubing can all fail. At any time. We have to be ready.

Ready for anything. Twice over.

At all times.

And so we are.



The trip was great! We visited with family we don’t see often enough, ate good food, and had a relaxing few days away. We even took Liam to another zoo.




For his part, Liam was wonderful. He endured the ride as well as could be expected considering it was RT 95 through Connecticut. He was well-behaved, turned on the charm for his grandparents, and aside from one late night with an increased heart rate that worried us until we realized it was just gas, stayed spectacularly within his baseline sats and numbers. In a new environment in a mostly climate controlled (dry) facility and only recently making a full transition off of supplemental oxygen these are not small details. I’ll be the first to admit that I get a bit nervous travelling and being away from my bubble. It makes me so proud to see how well Liam travels.


I hope he keeps it up. Because along with our wonderful trip out-of-town for a few days last week, at the end of my vacation from the day job I was approached by the nursing company that supplies Liam’s home nursing care. It seems they had representatives at the conference where I spoke last month and would like to send us all to Pennsylvania so that I can speak to their national meeting of all of their pediatric nursing directors (they have offices nationwide). Details still need to be worked out so I don’t want to say too much, but they want me to speak and I really want them to hear me, so it looks like our trip to New Jersey was just a dry run for a greater adventure.

We’ll be ready.

Ready for anything.






Dream Night 2014



Photo by Karin

The magic started when we met Hooligan, before we even entered the zoo. Hooligan, a Providence police horse, who was kind, patient, and gentle enough to meet Liam on our way into Dream Night at the Roger Williams Park Zoo this year. That’s the way things are at Dream Night, from the zoo staff walking around with snakes and lizards, to the docents volunteering in costume, the Hasbro Children’s Hospital employees checking families in, the face painters, jugglers, musicians and temporary tattoo artists, even the police officer on horseback at the zoo’s entrance, it is everyone’s mission to ensure that these kids with special needs, their families and even their carers have an even more special night.



Photo by Karin

No exaggeration, Dream Night is our favorite event of the entire year, and after being rained out last year we have been looking forward to tonight for a long, long time.




Dream Night  began at Rotterdam Zoo in 1996 and is now celebrated in over 170 zoos worldwide on the first Friday in June. In fact Roger Williams Park Zoo was one of the first zoos in the country to have a Dream Night, and it shows. Their dedication to this event rings true in the exceptional attention to helping each and every family have as much fun as they can possibly provide. 20140606-213334-77614438.jpg


Trachs and vents, wheelchairs and walkers, extra chromosomes or chromosomes missing a piece, from CP to Spina Bifida and any other neurological disorder, none of us feel out-of-place or different at Dream Night. The only night of the year that we can say that. At Dream Night more than any other night, we all feel a little more normal. Absent are the stares and frightened looks we’ve all grown so accustomed to. Instead there’s an understanding of our struggles, and a night to forget them. An opportunity to relax in a public space knowing that every other family there in some small way knows exactly why this night is so special.


So freeing.


So much  fun.





This year we even toured the veterinary hospital in the zoo. Not lost on us was the fact that so many of our families there tonight have more than a passing knowledge of hospitals so being allowed to walk around their hospital may have been my favorite part. Ultrasounds, x-rays, and endoscopy machines exactly as we have seen them used on our own children right down to the end tidal CO2 monitor. It was surprisingly fun to see just how similar the hospital facilities at a zoo are to the hospital Liam has spent so much of his life in, which I think is exactly why they open up the veterinary hospital for this event.






There were snakes named Chuck (pictured above) and Elvis, a miniature donkey named Willy, and a Gecko whose name escapes me. The giraffes and elephants were happy to enjoy their nighttime feeding in front of a crowd even though they normally eat in peace after the zoo is closed. There were no lines to wait in and not once did it feel as if Liam’s wheelchair was in anyone’s way. Even if it was. No one would have said so. We exchanged hello and knowing looks with families we’ve never met but who probably understand our life better than many of our own friends.

That is the magic of Dream Night.




Photo by Karin — It’s the simple attractions like these types of photo setups that we never really get a chance to get near on a normal zoo day. It takes time and effort to get a wheelchair setup back there. One of the thousands of reasons why Dream Night means so much to us.

Only 364 more days until we can relive that magic again.


Thank you, thank you, thank you to the wonderful people who made this night possible. The CNDC at Rhode Island Hospital, Hasbro Children’s Hospital, and all of the Roger Williams Park Zoo staff and docents. Your effort and enthusiasm are noticed and appreciated and while the Olson family will probably see you again over the summer, we already can’t wait for this time next year.


Editor’s Note: I was much more wordy in 2012 for Dream Night and I brought my real camera instead of just using my phone. This year I decided to not worry about pictures so much and just worry about having a great time with my boy and boy did I.


Just wait until your father gets home.

Understanding that families do come in all shapes and sizes, who among us don’t remember hearing some version of it?

“You go to your room and you just wait until your father gets home and hears about this!”

Being told when Liam was only three weeks old that he’d never reach the developmental level of even a toddler, I never thought we’d have to use that phrase in this house. I knew then that he’d prove them wrong and boy has he, but discipline is one of those “universal” parenting skills that held little importance for us.

“There are no spoiled kids in intensive care units” people in the NICU and then the PICU say, and for us, once we brought Liam home, it became “there are no spoiled kids on ventilators.” And it worked, for a time. As long as he was breathing, Liam would not hear the word “No” or “now” or the phrase “because I said so” until he was almost four years old.

So it’s our own fault really. Don’t let that cute smile fool you. Liam can be just as much the brat that any other five-year old can be.


Truth be told, I couldn’t have been prouder to hear that Liam had been pulled from his classroom and into the hallway by his teacher to discuss why he was misbehaving in class. The kid who would never be able to communicate. He almost got a Yellow Card (and we all know you don’t want something like THAT on your pre-kindergarten permanent record). But of course it wasn’t in the fact that he was ignoring his teacher and not participating in his schoolwork but in the how he did just that.

Among Liam’s many super powers is his ability to avoid obligations (dr.’s appointments, physical therapy, occupational therapy, speech therapy, family functions) by sleeping or pretending to be asleep. He hasn’t realized yet that his heart rate monitor betrays his brilliant performances every time. He does it because it works. This time though, Liam decided to push boundaries by actively, alertly, and fully aware of his surroundings and behaviors, refused to make eye contact with his teacher and moving his head around in an effort to NOT look at the activity she was presenting to him. Non-compliant and proud of it, in every way that a non-verbal, low-muscle-toned five-year old brat can be.



Let me be clear, Liam loves his teacher. He perks up when she is around and the work that she has been able to do with him has been absolutely staggering. It’s in that love and respect that I think lead Liam to push those boundaries as far as he could. It’s because of her love and respect for him that I think she pulled him out of class to discipline him. Ventilator or no. seizure disorder or no. Global developmental delay or no. Liam is held to the same standards of effort and participation as all of her students and if she were to let him slide because he was cute. Or because he has special needs she is doing him no favors.

The concept of obligation is a tough one to teach. But it’s a lesson every one of us needs to learn, so when I got the full report from Liam’s mom on my return from work at the end of the day, Liam and I had a nice long talk. A talk about respecting the teachers and the adults in his life. About work, about effort and participation. We talked about what he did wrong, and what he needed to start doing from now on. I didn’t have to work to hard to figure out what to say either. Most of my own “wait until your father comes home” moments came on report card day, where I would get a lecture about work, about effort, and about participation.



The next day I was home from work and was able to go with Karin to pick him up from school. His teacher came directly over to us as he and his classmates exited the building. ” Well thank you for whatever you said to him last night. He had an EXCELLENT day today! He worked so hard with me when I asked him to.” she told us.

I guess he learned his lesson. Must have been that whole afternoon spent with the guilt and the anticipation of a punishment of some kind.

Just waiting for his dad to come home.


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.


Playing Hookie


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.