5 days left 

   This morning I posted this picture of my Willamette hops to Instagram. Aside from maybe a shot here or there during brewing this fall it will be the last picture of the hopyard’s season. 
Which for me is kind of sad. 

Four years ago when I planted four rhizomes (one variety didn’t make it) the last thing I expected was for dozens of people all over the country to eventually start interacting with me in so many different ways. But in taking so many pictures of the Hopyard year after year a strange overlap occurred between parents of children with complex medical needs and disabilities and hop farmers, homebrewers and even some professional Brewers. What’s funny is that now I get questions from homebrewers and other beer folk about Liam, and questions from special needs parents and other medical folk about beer.

 It’s a special little community you’ve all created, and I couldn’t be more proud or humbled by it all. 

So when I decided to sell Hopyard t-shirts and set a goal for printing 50 of them I wasn’t exactly sure we’d make it, despite Karin’s assurances. As usual though, she was right, and I was wrong. Within 36 hours 50 shirts had been ordered fairy teeing a printing of as many as we can sell. What amazed me more than the amount though was who was buying. People we have never met before. Some were from people that didn’t even follow me on social media but had heard about the sale on Facebook or from some big hop farms who had seen the sale because of a hashtag and passed it along. 

The Olson & Son Hopyard shirts aren’t only going to friends and family. These shirts are going all over the country, to be worn by homebrewers, hop farmers, and special needs families all over the place and it absolutely has blown my mind. Thank you to all of you out there who have ordered, and Thank you to all of you who have shared. 

There are 5 days left to get one these beauties. They make awesome gifts, look pretty sweet and once this sale ends they won’t be sold again.

  
If you are able, and you enjoy the content I share here on the blog or on Twitter, and Instagram, Please help support the Hopyard and help us support the medical equipment costs associated with Liam’s medical needs by sharing this link far and wide before September 1st. 

The Olson & Son Hopyard staff aren’t just here in Riverside Rhode Island. They’re everywhere that have heard of Liam, and everywhere that like to see my photos of growing a backyard hopyard. 

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.

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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.

 

 

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Join The Olson & Son Hopyard team: A FAQ

It is adorable (and amazing, and humbling, and I am grateful for it) how you all humor me sometimes. The conceit being that the Olson & Son Hopyard is anything more than three plants spread across what is barely 24 square feet wedged between a 6 foot fence and my garage.  Barely bigger than anyone’s personal garden, the hopyard has taken on a bit of a life of its own on Instagram and Twitter. And so it was, this weekend when I posted this picture of the “& Son” part of Olson & Son, hard at work during our Newport and Chinook harvest, that the question came.

“Do you sell the T-Shirts?” someone asked in a comment.

“If you think people would buy them I do.” I put it back out there to see if anyone else would answer. And answer you did; with comment after comment letting me know that there is some interest in owning a shirt just like Liam’s. So now is your chance.

In honor of the 2015 Olson & Son Hopyard Harvest I am launching a t-shirt sale of a one time only limited edition printing session of Liam and my hopyard work uniform. These things  have been so exclusive to this point, that although she was the one to design and purchase these first two as a father’s day gift two years ago, Karin doesn’t even have one (I guess I’ll have to fix that now).

She might not have one yet, but as long as you act before September 1st, this is your chance to get one of your very own Olson & Son Hopyard Tee Shirts.

What follows is me interviewing myself about the decision to put something silly out there into the world and asking you to give us your money for it.

 So, uh, First of all, how was the harvest? 

It was great thank you for asking! Still far from over, we only harvested the Newports and the Chinook yesterday. The Willamettes are still a few weeks away from being ready to pick. Easily got over a pound of each variety but won’t know total weights until the drying is done and I vacuum pack them all. Willamettes were the hot plant this year though so I’m expecting even more weight on that plant than these two so we should have a great overall season yield.

 

Is that a lot of Hops?

Not really. It’s more than enough for my needs as I haven’t brewed with any commercially bought hops in over two years but I don’t really brew as much as I’d like to. As far as yeild per plant it’s not bad at all. I take very good care of these plants and they’re strong producers of flowers every year since I planted them in 2011.

Was the work and money spent all year worth it?

Without a doubt.  Even if I didn’t use any of the hops it would be worth it as aside from being between my wife and son wherever they are, my favorite pace to be in the summer is between my garage and that fence watering, pruning, taking pictures of, smelling, feeding, and staring at my hop plants. The pictures I send out online always seem to get positive reactions and I’ve made friends with people because of those plants. Add on top of it that I get to use them to make beer and it’s a win, win. But I’d be lying if I said I couldn’t use a few extra bucks in my pocket to keep it going every year.

So now you’re selling shirts for what is in essence a home garden? 

Yes that is exactly what I’m doing. But to be fair, I was asked about  doing it online, and the positive response when the idea was put out there was definitive. I am selling a one time printing of the same shirt that Karin had made for me and Liam as a father’s day gift two years ago. I am using Booster.com because it is the “fundraising arm” of Customink.com and I really like the quality of the shirt and did not want to take a chance of quickly switching to another printer like cafe press to set up my own online store front. That will come soon. A bit of fun with the people who follow the hopyard on Instagram, this is all a bit of an experiment.

So this is a fundraiser then? Is it for The Liam the Lion Fund(which we as family have supported all these years)?

Well yes and no. To both questions actually.

In the interest of full disclosure, there are multiple purposes for this fundraiser. Yes, most of the proceeds will go to the upkeep, maintenance, and remaining payments on Liam’s wheelchair access van, (The additional ramp motor  and power supply needing their own specialized maintenance every 6 months) but some will also be set aside for hop ropes, fertilizer and  if possible a bit for some grain and yeast to keep this wacky homebrewing, and hopyard project that garners so much interest on Twitter and Instagram chugging along year after year. but let’s be honest with ourselves. It gets pretty cold in New England and heating oil isn’t cheap.

And Winter is Coming.

So this isn’t a sanctioned Liam The Lion Fund fundraiser per se, but it is a bit of a run through for them though. The plan being to gear up for some online fundraising efforts for the Liam the Lion Fund in 2016. Bathroom renovations for Liam’s safety while getting in and out of the tub as he grows bigger and bigger, will need a wider net for fundraising as you can only hit up family with church dinners so much in 7 years.

And you think people will buy these?

No actually, but Karin does, and she’s super smart, and also enough people said they would on instagram that I just had to strike while the iron was hot. I set a goal of 50 shirts and if we don’t sell 50 then it won’t be printed and no one will be charged but if we sell more then 50 then a printing will go and the sky is the limit! If we sell a bunch more than 50 we might be able to pay off Liam’s van completely, freeing up needed cash each month for his other supplies. Even if people are buying them solely to help Liam, because I know he has so many fans out there, they can do so for just that reason and they get a great looking shirt out of the deal for their trouble. It just makes me feel better than say, putting ads all over the blog.

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Well if it’s a hopyard then why don’t you just sell some of those hops to make money off of all this?

Well because just paying for the shipping would be too much to make it worth while and there isn’t so much that I’d make more than ten bucks. Much of the hops will probably be given away to friends who brew beer too. Besides, I think that the story of the Olson & Son Hopyard is worth more than the hops are. I think that instead of selling hops or tee shirts, we are selling being a part of Liam’s story. We are selling our family. We are selling this blog. I have other ideas for upcoming projects, such as the decorative holiday wreaths we are already making with this year’s bines, and possibly even a book of photos and essays of the hopyard. They’ll be more business than fundraiser. But they’ll be selling the same idea.

Ok, ok, I’m sold, take it down a notch, geeze, you don’t have to pour it on so thick (“selling our family”??? ….ew) what do I need to do now.

If you want to be a part of the Olson & Son Hopyard team and look like you work here at the coolest non-money making, non-crop selling, hopyard in all the land.  Follow this link to the Olson and Son Hopyard Limited Tee Booster page and order. They only come in one color because that’s the color of Liam and my shirt. This is a one time deal and all orders must be in before September 1st. Depending on the success of this project we may do a new limited edition every harvest where we can experiment with other options. Have to come up with a tattoo logo for that.

If you already have a closet full of novelty tee shirts would you be so kind as to tell your friends on facebook and twitter about us and our cool t shirt, send them here for the link. Even though they won’t understand buying a shirt for what is a fake hop farm unless they already follow us, it would be pretty awesome, since I’m not entirely sure we’ll be able to sell 50 of these things.

 Ok, Anything else to share then before we go?

Only to say thank you to everyone who keeps visting us here on the blog despite my sporadic posting, and to those who follow us on instagram and twitter for updates on both, the boy and the hops. Both are doing very well this year!

And also to share this photo I took today for no other reason than because, this is what the monday afternoon of a three day weekend which included the annual hop harvest looks like. Sleepy family time.

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.

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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.

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.

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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.

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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.

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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.

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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.

WordPress Issues

In their infinite wisdom the brilliant minds at WordPress believe that they have come out with a great new way to create and enter posts for publishing to your wordpress blog. The problem though is that the interface is crap and while the sidebar of the window will scroll down the main part of the page does not move. The Publish button on some programs, Chrome to name one, hidden into just a tiny little sliver on the bottom of the screen. When inadvertently pushed  in error there is no recourse and so my unedited ramblings then get sent off to all of the followers to this blog, no doubt alerting all of my readers that I have forgotten how to form coherent thoughts or paragraphs.

So thanks for the great new way to create posts WordPress! Now when I try and delete the crappy post I wasn’t ready to publish to the public I’m getting an error message that you’re having problems moving my post to the trash.  Even better.

Just when I was getting back into this blogging thing.

If you recieved an email post from me a few minutes ago, please disregard it. I haven’t yet decided if I have the energy to go through and finish it now. I’m a bit frustrated.

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.

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. 

It’ll Be Just Like Starting Over

I’m not sure where or when, but I lost it.

Sometime in the last year I lost my voice.

Not my speaking voice, as can be evidenced by my presentation at Hasbro Children’s Hospital for Pediatric Grand Rounds with the Brown University Medical School in January, or in March when I spoke in front of almost 400 social workers and case managers at the New England Fathering Conference. No, my speaking voice is just fine.

Not my advocacy voice, as this year I was elected to serve as the co-chair of the Hospital Wide Advisory Council for Patient and Family Centered Care at Women & Infants Hospital, along with my post on the Board of Directors at RIPIN. On top of that I spent the first three months of the year working every Saturday with the LEAD (Leadership, Equity,  and Advocacy for Dad’s) Speakers Bureau through the Children’s Welfare Institute at the Rhode Island College School of Social Work crafting our stories with other dads to lead policy changes in the health care, family court, and child support systems.

And after two paragraphs like those, it obviously isn’t my ‘bragging about myself’ voice that I can’t seem to find.

It isn’t even my writing voice. I’ve been doing plenty of writing, you’re just going to have to wait a while and pay anywhere from $7.99 to $15.99  in order to read it in book form someday (hopefully).

No, it’s my blogging voice that I lost.

But I’m determined to get it back.

Determined to make this work again the way I have in the past because you know all of those things I bragged about up in the beginning of this post?

Yeah, well none of those things would have even been possible without this blog. Sharing Liam’s story, our story, and listening to you, all of you, in your comments and emails, and tweets, has been the only thing to give me enough confidence to stick my neck out and claim to have any expertise on something, for the first time in my life.

So until I can get back into a rhythm, I’ll start out small. There will be some short posts I’m sure. Maybe it will be a while before I’m back to big long 2,000 word essays again. Sometimes it might even be only a picture.

But there will be posting again.

Because lately I’ve been feeling guilty that I’ve abandoned this space that helped me find my true passion and calling for public speaking and advocacy. Because lately I’ve been feeling guilty that I have “abandoned” so many people who care about Liam and want to hear how he is doing now that he has finished kindergarten (!!!!!).

Because lately I’ve been feeling so guilty that NOT posting has become harder than regularly posting ever was.

Thanks for reading again.

It’s time for me to get my voice back.