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Mr. Liam Goes to Providence

 

While I may have stopped blogging the work never did. My advocacy just changed. Became more local. More in-person and face to face. So If you follow my social media accounts you already know that the Olson’s had a pretty awesome week. We watched the Patriots win the Super Bowl. We survived a blizzard. We celebrated the birth of a niece!!

Oh, that’s right,… we also went down to the Rhode Island State House because we are going to change the law to help protect kids like Liam and their right to a free and safe public education.

 

The short version, is that last summer the school department called us and said that effective the first day of school the one-on-one nurses that accompanied Liam to school for the previous 4.5 years would be unwelcome in the school and that they would be hiring a nurse to work as Liam’s nurse at school.

This policy change puts Liam’s life in danger. Liam will be left with a stranger. We would not be given this nurse’s credentials or work history. We were not even afforded a chance to meet this nurse. (How do they know it isn’t a nurse  we haven’t already fired from our home?) We are not going to leave liam with a stranger. CNA, LPN, RN, hell even MD. I do not care what letters are after their name.  This policy also effectively takes away any home nursing support since it would leave us only a few hours of approved time after the school hours. A small enough number that no nurse would want a 1.5hour shift before school etc.  (But what about snow days, what about school vacations.  What about when the schools nurse calls out sick) Taking away our home nursing support puts our safety and stability as a family at risk.

 

Anyway, within 24 hours of the phone call to tell us this policy change I had contacted the Principal, Supt. Of schools, all of my elected school committee members, the Governor’s director of Constituency affairs, my State Representative, My U.S. Senator, and Representative. (You don’t want to tangle with me.) Within 24 hours after that, my State Representative  (who was my high school history teacher and is currently a friend) and I were emailing each other drafts of bills from other states that give the control over 1:1 nurses in schools to the parents of the medically fragile child not the school department and preparing to file our own law here in Rhode Island.

Within 3 days of the phone call we had a meeting with the Supt. of Schools, and director of Pupil Services and were told that they would temporarily hold that policy change for Liam, but only for 1 year. For 1 year, he would be able to use the nurses who he had always had with him in school. So they essentially started the clock on me. I had 1 year to change state law so that their policy could not change and so that no other families would have to worry about this. Again, I say, don’t mess with the Olsons.

 

Last Wednesday, about 6 months after that phone call, we got to introduce that bill in the House Health Education and Welfare Committee.

 

Liam, Karin and I all got dolled up and got together with a whole bunch of other families of medically fragile children and told our elected officials of State Government why the need for this bill is so dire.

The experience was amazing. In addition to being sure that the legislature heard our voices on an important issue, Liam was welcomed and introduced and recieved a standing ovation on the house floor of the full session of the house of representatives. We were kind of a big deal.


If you are interested in watching me introduce The Continuity of Care for Medically Fragile Students Act to the House Health Education and Welfare Committee and hearing me speak on why it is so important for my family you can do so at this link.  The video is 3 hours long but for my part you only have to watch the first 20 minutes. Then, you can fast forward through to when Karin speaks at the 58 minute mark. (Or, I suppose, you could also sit and watch the entire meeting. Fine by me, it is a public hearing and it’s all important!)

 

The work is far from over.  In fact it is only beginning. We will hopefully need to do the same thing again on the Senate side of the State House, and then the full vote and drumming support for that. It will be a lot of work.

And if we win, we find another battle and start fighting again. Because as I told Instagram and Twitter on Wednesday, the night was restorative. It was visiting the State House to get my Citizenship in the Community merit badge  as a 13 year old Boy Scout, all over again. It was my high school trip to Washington DC with the CloseUp program (where my history teacher and future state representative was a chaperone) to learn about how government works, all over again. It was remembering how many people it takes for local and state government to keep running and that most of them are only doing so to help the people around them in their community. I needed that. Because I will say that while I don’t know exactly how much it will be, my return to blogging will take on an even more political point of view from here on out. Through their statements, actions, and with the people they have nominated and confirmed for cabinet positions, the new administration and the GOP have shown how hard they plan on working, not only to take away Liam’s health care but also to deny him his right to a quality public education.  They won’t do either without a fight from us.

 

#Resist

Ink.

There may be tens of thousands of drawings, illustrations, paintings, and tattoos of lions on the internet, yet it still took me almost 5 years to find the right one. Either too fierce, with open snarling mouth in full roar, or too cartoon-y, held up by a monkey as the circle of life surrounds the cub, what I was looking for needed to show strength without ferocity, innocence without over-sized Disney eyes. It may have taken me 5 years to decide on a design, but I’m pretty sure I got it right.

Liam’s neurologist, Dr. G., asked about my tattoo at his appointment this afternoon which is probably why I thought to write this post. I get asked about it all the time. It’s why I put it on my forearm, as conversations about my tattoo always, ALWAYS, turn into conversations about my boy. A feature not a bug, that was totally  by design.  Dr. G is probably the specialist treating Liam that I admire the most. He is brilliant and kind, he takes the time to make sure that we discuss all avenues of treatment. Liam was only three weeks old when he met Dr. G, he is the only doctor we have ever met who has treated another case of Miller Dieker Syndrome and, long before meeting us, Dr. G had started a clinic focused on lissencephaly in Boston, so he came into our lives with special expertise seemingly hand picked to treat Liam. Needless to say I was beaming with pride today when this man I admire so much had asked about this tattoo. Even more so since he seemed to love it.

But there’s also a part of this tattoo that I don’t talk about whenever it comes up. A part that is just for me. This piece was paid for with the cash prize I was given as the recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care by the Women and Infants Hospital. Not only is my forearm a physical representation of Liam’s nickname from only days after his birth and an illustration of his amazing strength, it is a constant reminder of the value and importance to sharing our story with the world. A mark identifying the calling that raising Liam has brought me to, in speaking and writing and volunteering to help not only families with children who have special needs and disabilities, but all patients and their families of the hospitals I work with.

Admittedly, it’s a lot of pressure and meaning to put on some ink under my skin.

But that’s just it…. All of my Ink, Means something.

 

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

“We should get tattoos today.” Karin said nonchalantly as we strapped little Liam into his carseat in the parking lot outside his pediatrician’s office 5 years ago. ” He just got his flu shot AND his 1 year immunizations. Poor kid just got stuck with four needles. Don’t you think we should get stuck with some too? Besides, that shop in town has a sign that says twenty dollar tuesdays for any words 5 letters or less.”

” Ha! yeah, good idea, that would be great.” I said waving her off and assuming we were joking, especially since I was due to be at work in less than an hour. “yeah, let’s get tattoos.”

A few hours later while at work I received an email. A photo of a wrist. A wrist with my initials in black. The subject line of the email read, YOUR TURN. After careful consideration of whether or not I was looking at sharpie ink on skin or tattoo ink in skin, I made up my mind to make a quick stop on my way home from work that night.

Now I know what everyone will say about tattooing names and initials on each other, because they all said it. I have more than one friend with big black tattoos that didn’t start out that way. Tattoos that had to be covered up when things fell apart, but after all that Karin and I had been through in the years it took to start a family, even if the unthinkable happened, I would be ok having a reminder of that part of my life on me, so of course if she got tattoo’d that day I had to follow suit.

“I think one of you guys tattoo’d my wife this afternoon.” I announced loud enough that all three tattoo artists could hear me from their stations as I walked in to the shop.

“Ah, you must be E.W.O.” a big guy dressed in all black said looking up from his drawing table. ” You know, she made a joke that she wasn’t 100% sure that you’d have the balls to come in tonight.” he said laughing.

I put a twenty down on the desk and started rolling up my sleeve. “Well then I guess now I’m just here to prove her wrong.”

 

And, not a day goes by that I’m not glad that I did.

**********

It was a simple little ornament. Probably only 2 inches long, with red ribbon through an eyelet at the top. A pewter viking made in sweden and given to me by my aunt for our Christmas tree the year before. Given my Swedish heritage, (my great-Gramma Olson was born in Sweden, coming over in 1903) I liked that ornament so much that I hung it on a shelf in our living room year round. Until I took it down on the morning of July 22 2006 (nine years ago yesterday), and slipped it into my pocket. After a long, hard fought battle with cancer, my grampa had passed away the night before.

For the next 2 months and 5 days that little viking ornament became a talisman of sorts. In my pocket at all times, I would rub it with my thumb when I needed to, and in those 2 months and 5 days I needed to.

Only a few hours away from exactly 2 months after my Grampa passed away, our son Ben Olson was born and passed away. Karin and I, along with my parents and her parents were given about 8 hours to be together with him. To hold him. To tell him we loved him. To let him and ourselves know that he was a part of a family.

I knew that day that my first ever tattoo would be for Ben, but I also knew that even though it wouldn’t be like that little ornament,  it absolutely could only be of one thing.

My first tattoo,

Ben’s tattoo,

It had to be of a viking.

 

Wracked by grief and sadness, in the few days between Ben’s birth and his funeral I rubbed that little viking ornament between my thumb and forefinger so much that it began to bend and the detail wore off. Afraid of losing it forever, I put it back on the shelf. It still comes out every Christmas to adorn our tree. Their deaths coming so close together, and both so closely ingrained in my mind, Ben is laid to rest next to my Grampa which has always given me great comfort.

The littlest viking sleeps with my big viking.

And he always will.

A few months later, Instead of an ornament in my pocket, I put my heritage and my fatherhood to that point on my arm. Where he’ll always be with me.

**********

I get that tattoos aren’t for everyone. I have more than a few extended family members who aren’t fans at all. That’s ok.

To me (so far), as you can plainly see, my ink is a representation of what’s important to me.

It’s a mark of my family.

And I am so happy that they are all there.

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.

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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.

 

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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.

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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.

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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.

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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.

 

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.

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.

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.

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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.

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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.

 

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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.

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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.

 

 

 

 

 

Still here.

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I could (and will) tell you awesome stories about Liam about to start trialing time unattached from his ventilator, or how amazing his progress as we cruised towards the end of his school year. I could (and will) post the essays I’ve started on my problems with the IEP process or my frustrations with what is commonly called the “dadblogging community”. I could (and will) regale you with the tale of finding a hidden gem of a local hiking path that is wheelchair accessible.

Although I could also (but won’t) tell you awful stories of two months of my erratic and inconvenient work schedule wreaking havoc on the time I’ve had to spend with my wife and son. I could (but won’t) post an essay about the grind of 24/7 care especially when the once a week night nurse relief unfortunately had to miss her shift due to a family emergency, leaving a 14 day stretch of less than 4 hours of sleep a night for both Karin and I. I could (and still might) regale you with the tale of the 14 hour hiccup attack and the car inconveniences and all the other things that come up and take away our ability to get the rest we need. The rest I apparently need to have the energy to blog at the end of the night (early morning) while I’m up watching Liam.

I really need to just start blogging in the morning.

In the meantime I’ll just post a picture and a wave hello. Tomorrow my work schedule goes back to normal. Tomorrow our usual daytime nurse (who has been caring for Liam for the past four years) comes back after 6 weeks on a medical leave. On Friday I’ll start a ten day vacation from the day job.

I’ll be around soon. For now here’s a picture, and a wave hello.

We’re still here. Thanks for coming back.