special needs

He just keeps proving them wrong. 

“I think you should focus on the time you have him with you now because we can’t really say for certain Liam will ever leave the hospital.” 

“Liam will mentally always be an infant, and won’t ever be able to communicate” 

“We might be at the point where we should discuss extubating from the ventilator and letting nature run its course.” ***

There are days that I wish we could track down some of the doctors that have crossed paths with Liam in the NICU and PICU just so that we could tell them “We told you so” 

Dropping this big boy off for his first day of the FIRST GRADE(!!!) this morning is definitely one of them. 

   

Happy first day of school to all of you students, parents, and teachers out there. 
****Yes, we once had a PICU Attending tell us this after only 48 hours of intubation when Liam was only 6 months old. He said this BEFORE WE EVEN DISCUSSED GETTING A TRACH! I’ve never come closer to punching someone in the face, and I’m thrilled to tell you he no longer works anywhere near here. I’d love to have a chat with him again now. 

Final day for orders. 

 

photo by Olson & Son Hopyard media director and CFO Karin.

 
Hard at work brewing beer this weekend here is the Olson & Son Hopyard and Brewing crew, with assistant brewer holding on to the 30 minute hop addition of .75oz of Chinooks. 
Just a quick not to remind everyone that today is the final day for orders of your very own Olson & Son Hopyard t-shirt, until next year. Click this link to order. 
Thank you all so very much for your interest and enthusiasm for our little project. Every t shirt sale helps us not only keep this fun hobby going but more importantly helps us maintain Liam’s medical equipment and needs. 

Your generosity has floored us all and I am so happy that so many of you have joined in the fun. I can’t tell you how much it cracks me up that in about three weeks people all over the country will be rocking their O&SH gear. 
Cheers! And thank you. 

Screen Time. 

Timing. It’s about timing.

When games aren’t really games.

Wait for the ring to surround the space invader.

Hit the headswitch when it does.

*BOOM*

Explosions. Fireworks. Applause.

Change to the communication app.

It’s about timing.

Wait for the green box to surround the words you want to say.

Hit the headswitch when it does.

*BOOM*

“Yes”

*BOOM*

“Hi Mom”

*BOOM*

“I love you”

 

You guys can control the screen time of your kids all you want. I get it. It just doesn’t work for our family. An ipad with a headswitch acts as Liam’s voicebox, in the same way that his vent acts as his lungs. And not so long ago neither would be possible. Especially at home and not in an institution. Not so long ago, the technology wasn’t there.

It’s about timing.

*********************************************************************

 

The Limited Edition Olson & Son Hopyard T-shirts are still on sale at this link until September 1st. If you’d like the hottest Pressuresupport and hopyard gear do not miss out on this sale. We have achieved our goal number needed to guaranteeing a print run, so there’s no doubt that shirts will be shipping out about 10 days after the sale ends.

I want to thank everyone who has ordered, or shared the link for all of your help and support. So many people shared the sale page link that I was near tears at work trying to thank everyone as it was happening. It happened so quickly that I was overwhelmed by how many of you out there wanted to get the same shirt Liam and I wear. The Olson family appreciates all of you.

 

 

Picking Our Battles

Editor’s note: Due to a poorly designed web interface from wordpress, an incomplete, incoherent, and unedited first draft version of this post may have been sent to your inbox if you are an email follower to the blog. So if it reads familiar that is why I’m sorry about that, and about the multiple emails from me tonight. please give it another try for me. Here’s the blog as it should read.

The principal of Liam’s school during a very heated and contentious meeting that also included the director of pupil services and the superintendent of school for the city of East Providence (yes, even the supt of schools, you don’t want to piss me off when it comes to giving Liam the services he needs, he deserves, and he has a right to) once told us that she was offended by the fact that she had heard my wife describe our interactions to demand the wheelchair lift that she had promised as “battles”.

My son was being made to leave his school building up to 5 times a day to re-enter through a different entrance to be on the floor where his other classes (art, library, music) during rain and cold weather but she was offended by our use of the term “battle”.

Her solution, as winter quickly approached and there was still no accessibility for Liam and the handful of other students who use wheelchairs in the school, was to put him in the 3rd grade class for those subjects. 3rd grade, for a developmentally disabled kindergartner, because those classrooms were closer, as if he were a piece of furniture. yet SHE was offended that we used the word “battle”.

During the same meeting this principal was caught flat out lying to us about whether or not Liam was already being put into the classroom with third graders without our permission (helpful to have a nurse follow Liam’s every move and texting us when something feels hinky) yet she was offended that we used the term battle.

It was a battle and we told her so again.

It was a battle that we won.

The wheelchair lift was installed over the holiday break in january. We haven’t had to interact with the principal since. I’m sure she’s thankful of that. But the next time we do have to cross paths. that will be a battle as well.

Because when it comes to making sure that Liam gets the services, the equipment, the supplies and even the medicines that he needs, it is always a battle.

One that his mother and I are perfectly suited for, and happy to fight.

*****

The equipment company that takes over 10 months to fix the armrests on Liam’s chair after his orthopedist and physical therapist alerted them that his original rests were unsafe and he was at risk for getting his arms caught and/or dislocating his shoulders during a seizure. After months of phone calls and emails, and not only one but TWO scheduled appointments for an equipment technician to come to the house to fix the chair where the tech was a no-call no-show (with Liam staying home from school specifically for both) the tech finally, on the third try, arrived at our house with parts, only the parts that he brought weren’t the new ones, they were the exact same armrests already on his chair. Then we got to start from the beginning all over again, signatures from doctors, approvals from insurance companies, months and months of opportunity for Liam to be injured with unsafe conditions in his chair. Being blown off by uninterested “customer service reps”

A battle in every sense of the word.

It shouldn’t take a full school year to switch a part on a wheelchair when multiple medical professionals deem it unsafe, but this is the system we fight.

Twelve days ago the armrests on Liam’s chair were finally replaced.Still, after 10 months, I have a hard time calling that battle a win in our column.

*******

The pharmacy that despite knowing that Liam has been on a med for over four years refuses to carry a full refill supply of it. Whether for the saving of shelf space or a refusal to pay for it until it has been paid for by my insurance, every time we call for the re-fill we are given a “partial order”. ‘We can only give you a few doses. Come back in two days for the remainder’ they say, increasing the chance of an error.

Three days ago we were told that they would not re-fill Liam’s prescription. We should have enough for 14 more days the insurance company computer told them, and they would not give us any more until then. End of story.

Or so they thought. Karin can be very persuasive. She has to be. Our sniper of phone calls. Explaining to the poor sap working his part time shift as a pharmacy tech that he was plainly wrong, and that they had to go back and recheck how much volume we were given in our last ‘partial’ fill. That not only would we not take no for an answer, but that we would hold him and his company responsible when Liam would need to be admitted to the intensive care unit the next day because of the withdrawal he would experience if they failed to fix their mistake.

Yesterday they called and explained that they did an inventory of their supply and found that, what do you know, they did owe us 14 days worth of Liam’s medicine. found a whole bottle with his name on it and everything.

That happened this week, but similar situations with prescriptions have happened dozens of times before. Liam takes 11 different perscription medications, Many of them in large volumes that for some reason this enormously recognizable corportaion refuses to keep in stock. The battle against incompetence is very real.

*********

The medical supply company that provides Liam’s everyday supplies like trachs, trach ties and vent circuits, suction catheters and feeding pump bags, pulse oximeter probes and fenistrated gauze sponges. All the things that keep Liam in his home and not in a hospital but that you can’t just roll up to your local megamart and buy if you run out of them. Again, if we run out of many of these supplies our recourse for keeping Liam alive is a trip to the hospital until we recieve these supplies, so you would think that a person going on vacation or leaving the company for another job wouldn’t put my son at risk but of course, you’d be wrong.

Because even if these companies cared about the patients that rely on them (which they don’t) the patient is not their customer. The patient’s insurance company is and as long as those reimbursement checks and approvals keep coming in, they can and will treat their patients like garbage. Including sending out Liam’s monthly order of necessary items with invoices showing that they have been paid for, but many of the items just happen to be on “back order”. Nearly every other month, when we are washing and reusing what should be disposable felt ties that hold Liam’s trach in place at an exposure point for infection, it gives me such comfort to see that the company has already received the funds for those products. Essentially removing the motivation for them to rush those type of products out to us.

The patient is not their concern, their shareholders are, the insurance companies are, medicaid is. But make no mistake, it isn’t my son that they care about.

So they don’t like hearing my voice on the line, every month when we run out of the things that keep Liam alive. Where Karin is our sniper in battle over the phone; I am our nuclear bomb.

********

The oxygen delivery service that brings Liam his oxygen every other week decided last month that instead of delivering on Thursday they would be switching our delivery day to Tuesday. I shouldn’t be the one who has to point out to them that if you are changing us from thursday to tuesday that you have to make that change on the tuesday BEFORE the normal thursday delivery, or else we will run out of oxygen. I shouldn’t have to be since you would think the dispatch and delivery department for an oxygen delivery company would understand that people’s lives rely on them doing their job correctly.

You would think that, but you’d be wrong.

The job doesn’t get done correctly without a fight.  Without a phone call. Without a battle.

*********

School departments, insurance companies, medical supply and equipment companies. “Partners” in care. They arm themselves with bureaucracies, with paper, with seemingly automatic denials only to approve to anyone with the audacity to appeal. (how many people get an insurance denial and don’t think they can appeal? The math must work out in their favor.) They defend themselves with red tape, with their “policy”, with the incompetent at best and inconsiderate and uncaring “customer Service reps” at worst, and every single time, it puts my son’s life in danger.

Which is why we fight. Which is why we arm ourselves with emails, and phone calls, and documentation. It’s why I can be such an asshole on the phone. We fight incompetence with aggressiveness.

And we always win.  We have to.

Our son’s life depends on it.

The Year (so far) in Pictures

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.

Yay?

*****

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.

 

All I Ever Wanted

  
And so maybe it wasn’t the best idea to announce my triumphant return to blogging the day before a ten day vacation from the day job. 

I know that none of you people come here to hear about me. It’s all about the boy and it should be. 

Over the next day or so I’ll finish the big post of a photo dump along with highlights of the year so far, but tonight I still feel like celebrating the fact that I don’t have to got to work for the next week. This is the first vacation time I have taken in over a year that wasn’t used to attend a conference, or give a speech, for my part time “job”, and by the side eye glance I’m getting from Liam in the photo, I think he’s already tired of me being home.

So instead of finishing that post, tonight I’m going to sit on the couch between my wife and son. I’m going to watch something funny on television and I might even enjoy a beer or two.  

Best Monday in a long time. 

A quick visit.

******

It always happens so damn fast. After an amazing Saturday afternoon which included a visit from New Jersey by Liam’s grandparents, dinner out at one of Liam’s favorite restaurants (of the two he’s visited), and a visit to one of our favorite places in all the world, the Roger Williams Park Zoo. It was Sunday that started with Liam having a weird shivering motion we’d never seen before and a rising temperature. Some Tylenol and Motrin, and a quick call to his pulmonologist’s nurse practitioner just to give her a head’s up, things seemed to resolve using Liam’s sick plan (The sick plan is a series of ventilator changes and nebulizer treatments given at our preditermined increase when Liam isn’t feeling well, Waiting until an illness arrives is the wrong time to come up with a plan for how to treat it with a kid on a ventilator.). Reaching a high of only 101.3 in the afternoon, by the time we got Liam to bed at 9:30pm he was sitting at 98.8 and we thought we were out of the woods.

It was 11:18pm when we went in to check on Liam. Now, with his temperature rising, the shivering motion that resolved so quickly in the morning was present and stronger. His rate of breathing was about three times what it should be. By a quarter to 12am we were calling 911.

By my count 5 of the 6 EMT’s and firemen  who responded have been here before Sunday. The holdout looking barely old enough to drive. The blood rushing from his face as he walked in and took in the tubes and chords across a little boy’s bedroom. He watched as we changed Liam’s trach and looked for a chest rise and listened through our own stethescope, listening to see how well he was moving air just in case the respiratory problems were from an occluded trach. I would have laughed at him if I wasn’t busy rushing out of the room to get the Liam’s suction rig ready for an ambulance ride and making sure the med list saved in my phone was current, while Liam Karin got Liam, his ventilator, and his oxygen tank ready for his transfer to the stretcher.

It’s been a few years since we’ve had a sick visit to the children’s hospital. We’re out of practice. But back into our roles we all fell pretty easily. Put onto the Servo Ventilator ( a huge hospital-only piece of equipment) in the ER and for it only taking three tries in three different veins on three different parts of his body to get an IV access (it usually takes many more), Liam almost immediately looked to be breathing better. Against the doctor’s wishes (“that’s not the priority right now!” she yelled at the nurse) the impressive ER trauma room nurse caring for Liam, was able to get the blood needed for labs before taping the line onto Liam’s bicep. That line would miraculously stay flowing and give them a place to administer IV antibiotics, until we left yesterday afternoon, and while she tried to get it while getting yelled at by a Dr. I cheered her on the whole time as if she knew that Liam being such a hard stick, if she didn’t get the blood from a vein then, it would probably take an OR procedure later to do so and not blow the line for access.

By Monday afternoon Liam actually looked pretty comfortable. Sleepy for sure but his fever controlled again by tylenol and motrin, the new Nurse Practioner of the PICU who we had not yet met, seemed more than a little surprised and a bit put out that even though he was back on his home vent and his numbers seemed to be ok, I refused to let her ask Liam’s pulmonolgist and the PICU Attending Dr. to let us go home that afternoon.

“Parents don’t usually ask to stay here another day sir, his numbers have been very good.” It was clear her plan was to get us out of there as soon as possible. Karin and I gave her the reasons why we flat out refused to go.

“Even though he looks fine now, we haven’t gotten any answers as to what happened to cause him to get here. We made subtle changes to his vent settings only a few hours ago!  We don’t know yet if he’s going to tolerate them while he’s awake and breathing normally?! Lab cultures haven’t even come back yet, we don’t even know what his high white blood cell count in the ER was fighting off. No. We have gone home and then had to turn around and be re-admitted before, we aren’t doing that again. No. we are staying one more night to see if he really is doing better.” I said.

I’d be lying if I didn’t get just a bit of satisfaction when she had to come back only a few hours later and explain that his blood cultures grew out strep pneumo probably causing the fever and the pneumonio symptoms in his difficulty breathing the night before, and that while we wait to see what antibiotics this bug is most sensitive to, if we had gone home when she offered, she would have then had to call us back to be re-admitted through the ER for IV antibiotics. We were right. It was a good thing we hadn’t left.

The wait was kind of brutal. Liam really was doing much better. But that was because of the Cephtriaxone. If there were an oral ( or a non-IV administered version) of that antibiotic we would have been home on Tuesday. Instead, we were forced to wait until the lab got true drug sensitivities of this particular strain. Apparently different strep bugs all over the country are more or less sensitive to different antibiotics.

“Why haven’t we just tried good ol’ penicillin? We used to always treat strep with Penicillin.”  the attending Doc relayed at morning rounds on Tuesday. Having known Liam most of his life though (and spending one entire night a few years ago never leaving his room as she ruled out whether or not he had had a heart attack due to the sceptic shock just ravashing his blood pressure. Don’t worry. He didn’t) she added, “well I guess there’s no need to get cavalier about it though, this is Liam. Better wait on the Lab. One more day.”

By Wednesday morning’s bedside rounds, the lab sensitivities were in… We knew if we had an oral version of the antibiotics allowing us to bring Liam home.

It was penicillin.

Good Ol’ Penicillin.

It was time to go home.

We are all at home now, but It’s been a long week. A week of sleeplessness and worry. But also a week of bragging about the boy. Bragging and visiting with people who have spent time with Liam at his worst. People who have been there to help save Liam’s life multiple times, but don’t get to see him use his ipad. People that care for him for weeks post surgery but not for the weeks post Santa visit.

Like the proverbial pebble thrown into a lake, Liam has touched so many lives. Part of being Liam’s parent is knowing that every now and then Liam will decide it is time to teach a med school class to a rotation of new residents. To open the eyes of a brand new EMT.  To reach out to a nurse he may have taught something to in the past (one of his nurses this stay learned how to change a trach on him  a few years ago, the last time he was admitted, and under our supervision and permission.), or to teach a Nurse Practioner that maybe listening to the patient (or his parents) is just as important if not more important than what the numbers say.

We’re all at home now, and it has been a long week. A week of sleeplessness and worry. But I did so much bragging about Liam, and he visited with, so many people who have known him for as long as he has been alive, people who have helped him through his very worst times.On top of that, Liam met new friends. Friends who will go out into the world feeling the positive energy of meeting a charming boy like Liam and bringing that into their careers as nurses, and doctors and respiratory therapists.

We’re all at home now, and it’s been a long week. A week of sleeplessness and worry.

But on some weird level, and this is only because aside from the few hours in the ER Liam was basically comfortable the whole time,  I can’t say it hasn’t been a little bit worthwhile.

*****

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. 

My Bona Fides. 

Yes, I am the Eric Olson in the article, and yes I am the 2014 non-clinical recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care, and yes the reason I’ve started writing for, and posting to, the blog again was because last week when I was told this was printed in my hometown newspaper the East Providence Post, I wanted to make sure that I didn’t make a liar out of whoever wrote “He regularly updates his blog,” since they were right about everything else in the announcement.

Yes, I won an award. I’ve never won an award before, and I am really proud of this one. Even now, a month and a half after being presented the award (and that was a month after I was told I had been selected the winner), I am still kind of amazed and speechless that I was even considered for this honor, and there are a bunch of different reasons why.

1. Reason the first (not in ranking of importance, just a listing). This award, as the article mentions and as Mrs. Welch noted in her speech during the presentation in January, was not about my work, at my “work”. Yes I work IN the Women & Infants Hospital but I work FOR (meaning who signs my checks) a large management subcontractor managing the kitchen. I am decent at my position but in my day job I have little exposure to the care of our patients other than providing safe and tasty meals while they stay with us (although, as I tell my staff, whether or not you have direct patient contact, ALL hospital employees impact patient and family centered care). Instead this award was for my work on the hospital wide advisory council for patient and family centered care, where the perspective I bring is more often as the father and husband to former patients, rather than a department manager. It was for my presentations and speeches to Pediatric Grand Rounds, and the Follow-up Clinic conference on NICU dads.  It was about the work I did attending the Institute for Patient and Family Centered Care National Seminar last year. It was about the work I do sharing Liam’s story with you. Right here. Because without this blog and all of your responses to it, I don’t think I would have had any idea that Karin and Liam and I had a story worth sharing, a point of view that had any value, or that our experiences could help people and systems of care for anyone else out there with a family member with complex medical needs.

2. The second reason that this award is so cool and I’m so proud of it is because it isn’t just about me. I of course would have no story to share, No motivation to help, and no confidence to stand and speak were it not for my amazing wife and this incredible little boy that we are lucky enough to have in our lives. I often say at my speeches that I had never been able to speak in front of groups before Liam was born but get me bragging about that kid and I could speak to hundreds, Thousands! And I would do it for hours. I’m not the award winner, we’re an award winning family.

3. Third, the award came with a little money, and as soon as Karin heard that she insisted that I use it to get something just for me. Not to use it all for heating oil and car maintenance but to splurge on something that I’ve been talking about getting for the past 6 years but could never justify the expense. Even though most of it did go to those bills, I was able to save enough for my own award and it means so much to me.

Finally I was able to get my next tattoo. And every time I look at it or show it off I remember where the money for it came from.

If you need a tat in Rhode Island go see Greg Arpin at Unicorn Ink, he does incredible work. This came out better than I could have imagined. Works out pretty well when your kid has a badass nickname.

 

4. But I suppose the biggest reward of receiving this award is that I’m beginning to actually believe that I am an advocate. That I’m legit. Ive got my bona fides.

The award is knowing now that I can do this. Not only because it’s what I am so passionate about, but someday, if I can figure out my way in, because someday it will be the way I make my living. This award is recognition that I am on the right path for that.

Recognition that I have a story, the skills, and now the confidence to tell it, only it isn’t my story,

it’s Liam’s story.

I’m just the guy who he awarded the opportunity to tell it.

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