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The Spring ’16 Olson & Son Hopyard T-Shirts are here!

Last year, thanks in very large part to the readers of this blog, The Olson & Son Hopyard sold more t-shirts than any backyard garden ever should. Overwhelmed by the generosity of both the special needs community, and the hop farming and beer community, The Olson & Son Hopyard has blossomed into a weird but beautiful project of gardening, photography, storytelling and advocacy.

As Liam has gotten older sharing the details of his medical life has grown difficult as I struggle with the idea of his privacy and consent. Through the lense of Liam just being my child and the co-owner of the Olson & Son Hopyard, it becomes less about Liam Olson Special Needs Kid and more akin to Liam Olson that kid who grows hops with his dad. Not everyone will see the distinction, but I do.

So to make a long story short (and one that doesn’t even need explaining to any of you who follow my instagram or Twitter feeds), working in, taking photographs of, and writing about The Olson & Son Hopyard has made me very very happy over the course of the last year. It is why I am so excitied about unveiling this year’s spring T-shirt.

 

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Yes, we picked the shirt colors based on the new hopyard work truck’s colors. Yes we went through all of the trouble of getting Liam’s wheelchair into the back of the truck just for this photo of us in the hopyard.

 

Tomorrow, just as our Liam Love event is kicking off where a limited number of shirts will be available for purchase, our Booster sale for this year’s t-shirt will go live and be up for online sales for the next two weeks. I’ll post the link tomorrow, both here and on the brand new Olsonandsonhopyard.com.

Moving forward, the plan is to do a new limited edition t-shirt every spring, and something different every fall. Maybe hoodies, maybe hats, we’ll see. This will be in addition to our annual wreath sale of holiday wreaths made with the dried hop bines and rope or twine they grew on. And someday, hopefully  fairly soon, when harvests and expansions grow large enough, that product list of the Olson & Son Hopyard will include hops for your brewing needs. We all have to start somewhere, this is where Liam, and Karin, and I have the means to start.

Thank you all for reading. For your support and thank you in advance to anyone of you that could share our story and tomorrow’s link. either from here or through Olsonandsonhopyard.com. I may have gone silent here the last 6 months or so, but only because Liam and I have been so busy,

 

Out in the hopyard. We have uniforms.

And you can get one for your very own.

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.

 

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“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.

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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.

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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?

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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.

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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.

Proud.

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.

Playing Hookie

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

Yesterday, we all went to the zoo.

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

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

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

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

Being sure.

I think about the conversation nearly every day.

The seemingly scatterbrained geneticist with her big huge textbook on chromosomal trans locations. 20 hours earlier we heard the word lissencephaly for the first time. Only minutes earlier we heard the term Miller Dieker Syndrome for the first time. Karin and I sat nervously on the NICU “family room” couch. A two week old Liam lay in his isolette 30 feet away.

“I have some here if you’re sure you want to see them ” she grasped the textbook and slid her fingers to the page marked by the post it note sticking out.

“See them?” I asked. We were talking about chromosomes. We were talking about my son. About “abnormalities. About life expectancies. I didn’t need to see charts or molecule diagrams at that moment.

“Well, pictures of other kids who have the same diagnosis. So you know what your son may look like due to the syndrome. If you think your OK with seeing them I can show you some pictures of children up to a few years old. ” she said it just like that. Clutching her book and waiting for us to decide, as if what were about to see would have us heading for the hills.

I don’t have any idea how hard it must be to be a geneticist who’s job involves telling brand new parents the kinds of things that are “wrong” with their kids. Things that, though could not have been prevented, bring tremendous guilt since it came from within themselves. How difficult it must be to choose your words. To decide how to frame the conversation without setting expectations too high or low. I don’t envy her position in this.

Karin and I looked at each other for a second both nodding that we were ready for whatever we were about to see. We grabbed each other’s hands and told her we would like to see the pages.

The geneticist opened the book first to herself and then turned it around toward us. We looked on in silence. Looked back at each other and back toward the book and its pages again.

” I’ll leave you two alone for a few minutes to look at the pictures and I’ll be back to answer any questions you may have.” She excused herself without a word from either Karin and I who had now flipped through the four page textbook entry that included about a dozen photos.

“Uh,…” Karin seemed to be choosing her words carefully. “Um, what am I missing?”

I knew exactly what she meant.

“These are the cutest kids I’ve ever seen! Why did she make us decide if we were sure we wanted to see this. What am I supposed to be seeing here?” She said with relief in her voice.

“Well it says here, pronounced forehead, shortened nose, widely set eyes. I don’t know, they look like kids to me.” I said.

I remember laughing. Us both laughing. After twenty hours of mostly tears we had no idea what our future would hold. We had no idea what a life with a Miller Dieker kid would be like. We had no idea if Liam would even make it home from the hospital.

But we still knew what was funny.

And when a scatterbrained geneticist worries you into thinking your child’s head is going to end up growing inside-out but then shows you pictures of a bunch of adorable two year olds, well …that’s funny.

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I think about that conversation nearly every day.

Whenever I see a picture of Liam and marvel at how incredibly adorable he is.

Whenever I look at him and marvel at how handsome he is.

Whenever I’m amazed at how I could have possibly had any part in making something that looks so …

Perfect.

And now I ask you, are you really sure you want to see them?

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How Liam taught me to love The Bruins.

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

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

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

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

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

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

It was in that moment that I became hooked.

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

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

I really don’t care.

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

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

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