The games we play. 

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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. 

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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. 

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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

 

 

Liam meets Santa

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For almost ten years I’ve called Evelyn a friend but I suppose acquaintance would be more accurate. Walking past her desk every morning on my way to my own our talks would range from 15 second hellos to 20 minute complaint sessions about the Red Sox. She even took these photos, as we passed her desk on the day Liam was discharged from the NICU. (I wrote about that day and these photos here.)

For ten years I’ve called Evelynn a friend. After yesterday, and what she and her family did for Liam, I feel like I should call her family, and I don’t know if I’ll ever be able to thank her enough.

*****

“Hey Eric, have you taken Liam to get his picture taken with Santa yet this year ?” She asked, the beginning of last week, as I made my way into the office.

 

“Hmmm, No. Actually Liam hasn’t ever met Santa Claus yet, we just can’t wait in a germy line of kids at the mall or anything. Someday though, and he’s almost 6 years old now so soon I hope.” I explained, but Evelynn asks about Liam every day. She knows the deal.

 

“PERFECT!!” She shouted ” what are you doing next Saturday? You have to come to my sister’s house.” She picked up the phone in front of her and held a finger up to make sure I didn’t walk away. “Yeah, it’s me, what time on Saturday? Liam is going to come….. Liam!, that kid I was telling you about. His family is going to come on Saturday. Ok. I’ll let him know.” She hung up the phone and that was that. On my way into work on a monday morning I somehow had made plans to go to someone from work’s sister’s house for dinner on Saturday night. And I still wasn’t exactly sure why.

Evelynn had to explain.

If we came to her sister’s house on Saturday night, Liam would finally get to meet Santa.

******

Evelynn’s sister’s family had had her own children’s pictures taken with Santa and Mrs. Claus at a local restaurant from when they were infants until they were in college. With all the kids home for the holiday this year they had hoped to continue the tradition with a picture of their nearly adult children but the restaurant now closed leaving them without a place for Santa to see them this year. Until Evelynn’s sister had run into Mrs. Claus somewhere shopping. Mrs. Claus explained that Santa would be happy to stop by her house to take the picture, and a date was set. Plans were made.

Santa was coming, and by Evelynn’s thoughtfulness, and her entire family’s boundless generosity, it turned into one of the most magical evenings of my life.

We arrived a little early, and after getting Liam’s chair up the portable ramp we travel with, introductions were made. Introductions made so warm and comfortable that we were instantly set at an ease of familiarity among a group of strangers and one acquaintance. No one asked about Liam’s chair, or his syndrome, or his wheelchair, but each and every one of them pinched his cheeks, and said hello, and told him how handsome he was. A house filled with relatives and lifelong friends who instantly treated us as one of their own.

And when they all heard that Liam had never before met Santa Claus, the entire party seemed to change from a oppurtunity for them to relive old family traditions to a celebration of their part in starting a new one for us.

*****

And then Santa arrived and met Liam.

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Along with Mrs. Claus and their elf helper Tiny, Santa was able to stay for about 45 minutes. He sat, holding Liam’s hand and whispering in his ear for easily 35 of them. Concerned that we were monopolizing Santa’s time too much, many in the room with their own camera’s firing away and with joyful happy tears in their eyes waved away my concern telling us and Liam to take as much time as we wanted. They would ultimately get their own pictures taken but their patience and interest in being a part of Liam’s first exposure to Santa was truly a testament to the power of the Christmas Spirit as hokey and Charlie Brown Christmas as that may sound.

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Liam had slept for almost 22 hours that day. A rough end to the week with seizures induced a medicine change on friday night which wiped him right out for most of Saturday. Most but not all, for when St. Nick was whispering in his ear and holding his hand, Liam was wide-eyed and alert, engaged in communication and tugging for dear life on Santa’s beard with his free hand. Liam won’t tell me what they talked about. He won’t even tell me if Santa told him if he’s on the nice list or not. Whatever Santa had to say to Liam will always stay between them. I like that.

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After Santa had to leave and get back to his busy week-before-Christmas schedule, we stayed and we ate dinner and we got to know everyone a little better. When they found out that Liam’s birthday is the day after Christmas the whole group of our new friends sang Happy Birthday to him. We left happy and to invitations for future plans including a repeat holiday visit next year if possible, and as we made our way out the front door and down the ramp the first snow of the season here started sticking to the ground.

It was downright magical.

The magic of friendship, the magic of a kind and open-hearted family, and the magic of Liam’s positivity and love.

But, I think most of all, it was the magic of Santa.

 

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Storify of a Surgery.

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It’s been a long week. Karin had surgery and was in the hospital for almost four days. To add to that stress her experience was beyond awful. While I didn’t blog or write during the stay I did tweet. Below is the link to a storify story I put together using the tweets I sent during her stay and the instagram photos I posted included in the timeline. Please have a look. It’s multiple pages and storify can take a little while to load but I’ve already written the details in these tweets and I don’t have the energy to figure out how to imbed the story into a wordpress post. If anyone does let me know and I’ll repost.

The First of Many

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I’ve got frustrations with school posts left to post, and I’ve yet to recap our trip to the zoo to meet Anton, and over the next few days Liam will be transitioning from his trusty LTV-900 ventilator to a newer, lighter, quieter and more computer driven TRILOGY vent ( you may be surprised to learn that the quieter part of that is what is giving me anxiety as we have been living our lives to the rhythm of Liam’s breath for five years, I’m afraid of not hearing that, especially at night). In other words, I’ve got so much more to post but if you’ll endulge me, this one will be one last post about my trip to Philadelphia last week to speak at the Bayada Pediatrics 2014 directors forum.

This morning, they were kind enough to send a video of my speech that one of the forum participants took on his cell phone (Thanks Will!). After mentioning any of my past presentations here or on Twitter, many of you are kind enough to say that you wish you could have been there to see it, nd since this is exactly the type of thing I’ve been lucky enough to be asked to do that never would have happened without this blog I made sure to ask permission to post it here when I heard that someone had filmed it.

A few notes..

1. I doubt that I’ll ever post in such detail about any of my future speeches, but this one is different. My past events have been at the hospital where I work, and while they have all been well recieved, I was asked to do each of them by people who knew me before Liam was even born. This event was born solely from someone seeing me speak and wanting me to be a part of their own program. No one has ever flown my anywhere before. This was the event where I decided to stop waiting for people to call me a writer, a speaker, or an advocate but to start introducing myself as one. A big distinction, and I’m not looking back.

2. Sadly, the screens I was presenting in front of were just too big and awesome. Karin often jokes with me when I get stressed about writing these things that I could read probably the phone book while standing in front of huge pictures of Liam and the audience wouldn’t care since he’s so adorable, and she’s right. It’s a format I’ve used in all of my presentations. This 20 minute presentation includes almost 50 slides. My slides are not your typical powerpoint bullet points but are stand alone pictures of Liam projected as large as possible to help tell his story. Due to the size of the room and screens, the video catches a few of these images but is mostly just me talking. Hardly the exciting part of seeing me present.

3. I thought about trying to edit this video to a split screen to add the images alongside, or to lay the audio over the slideshow but ultimately I decided against it. First of all, the job is done. I spent my time writing, and travelling and giving the thing. To spend more time working on it now would take me away from the next thing. Second of all, if you want to see the whole show, you’ll just have to have your local children’s hospital or nursing company, or other group, ask me to come speak. While sharing, writing, speaking and advocating are all things I have done /would do/ and will do for free in some cases, I’m learning that what I can provide by way of our story does have value and if more of the support of my family comes from consulting and speaking than it does from being a foodservice manager I would be a fool not to pursue those avenues.

4. I really would like to take this time to thank Bayada Pediatrics (the pediatric arm of Bayada Home Health Care) for asking me to present to your first ever Directors Forum for office directors from all over the country. They thought of everything by way of accommodations and logistics so that the only part of the whole trip that I was responsible for was the content of my speech. Everyone that I met was supportive and helpful, and seemed genuinely excited for me to be there speaking to them. Everyone was so nice in fact, that the night before I worried that maybe having the middle ten minutes of my speech being a list of my complaints about home nursing, might be too negative for this crowd. Thankfully, it was exactly what the program organizers were hoping for, as they had explained at breakfast before the meeting, setting my mind at ease.

I was surprised to learn that many of the office directors have not previously been home nurses, (not sure why I assumed that though, I manage a team of supervisors responsible for nutrition and special diets but am by no means, a dietitian or nutritionist.)  These are the directors and managers from the office, and although I had to leave for the airport quickly after presenting, the participants I did talk with seemed to appreciate our story.

All in all I was impressed with the excitement and positivity I saw from the company charged with keeping my kid safe.

( It won’t get them off the hook the next time I have to call the office in anger though. )

4.It’s about twenty minutes long, but if you’ve got that to spare and you feel like listening to me complain about home nursing but then sing the praises of three nurses, here you go…

 

 

 

 

 

Proud.

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This morning I woke up in a fancy convention center hotel room about a half hour north of Philadelphia after flying there yesterday. A few hours later I gave a speech to a national meeting of more than a hundred pediatric nursing directors for the home nursing company that provides Liam’s nursing. The entire time I was there I was treated like some kind of celebrity. Initially afraid that my speech seemed to focus too much on the negative aspects of home nursing, my speech was very well received and gave me even more reassurance that Liam’s story, our story, has value.

It was pretty awesome.

Still wasn’t the most awesome part of the last 48 hours though.

That distinction goes to visiting Liam at school yesterday morning, a few hours before my flight out of town, to see him use his walker again for the first time in almost four months. Kiddo exceeded everyone’s expectations.

You have never seen true determination until you have witnessed Liam walking down a hallway.

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Before we could even strap him into the walker those legs started pumping and he chased me and his mom down the hallway about 50 feet.

I’m pretty proud of my speech, and the fact that I was even asked to address a national meeting of nursing company professionals, but seeing Liam walk again so well after fearing a big regression over the summer is cooler than anything I could have done the past few days.

It’s not even close.