Thoughts on our Halloween

It was actually Easter I think, a bunch of years ago, when Liam’s cousin Max saw us coming up the front walkway at Gramama’s house and bounded towards us with toy in hand. Racing toward us so quickly and at only three or four years old at the time, I could barely understand him as Max pushed the Darth Vader action figure into my hands. 

” the same, the same bleeding machine, he has bleeding machine!” His excitement proving that he had been waiting for us to get there just to show us.

” a bleeding machine?” I asked for clarification, as max let me have the toy and gently grabbed Liam’s hand to say hi to him. 

“No.” Max said and grabbed onto the circuit tubes connecting Liam’s trach to his ventilator. “BREATHING MACHINE.” He said. 

The same. The same. 

Better than even some adults who had met Liam in the early days, it isn’t as complicated as some would make it, his cousins got it. Like it was no big deal.

Darth Vader and his cousin Liam. They both need a breathing machine.

The same.

I’ve always loved that story and that moment, because in Max’s childlike enthusiasm he showed not only that he understood  what Liam needed but also that it was pretty cool.

I’m thinking Liam’s cousin Max would get a kick out of Liam’s Halloween costume this year. 


Darth Liam finds your lack of faith disturbing

Halloween can be tough one for us. Liam doesn’t eat by mouth so candy is out, most sidewalks and front walkways ( in our neighborhood anyway) aren’t wheelchair accessible, and even school has made costumes on Halloween against the rules, opting instead for a “spirit day” where all students are encouraged to wear black and orange, but NO COSTUMES! Either intimidated by the wheelchair ramp or because there just aren’t that many kids in the neighborhood we only got four trick-or-treaters so even making an event of that part of the night doesn’t work much for us. 

Basically, it’s hard not to feel isolated when nearly all aspects of the day do little but highlight how different our life as a family can be from so many of the people around us. Even dressing Liam in costume, an act that is essentially only for Facebook and Instagram, can be fraught with difficulty. 

Long time readers know how important Liam’s dignity and agency are to us. He is a little boy, he isn’t a doll, and so are we dressing him in costume for our entertainment or because society tells us that we must on Halloween. I don’t know. When he was a toddler it was easier. Choosing the right costume for a baby is always more for the parents whether going for adorability or irony (mad men characters? Game of Thrones? Donald Trump?) but at what age do we take into account what a non-verbal Liam wants or does not want to wear? We make it a point to ask Liam to choose his costume, and he does. We ask him if he feels comfortable when he’s wearing it which he generally does, and if he doesn’t it immediately comes off. Thankfully, target has come out with these hooded sweatshirts with a partial mask attached to the hood. Last year Liam was Captain America, this year he was everyone’s favorite Sith apprentice, while wearing nothing more than a hoodie. Awesome. (This is a blog that doesn’t do ‘brand engagement’ for a number of reasons. But thanks for these Target) they’re so awesome in fact that against the rules or not we send Liam to school in his costume anyway. I can’t wait until they try and tell us we shouldn’t have done it. Showing off his hoodie at school is just about the only Halloween thing he can do. 

This year we made the best of it. Unfortunately we spent a portion of Halloween at Liam’s pediatrician’s office (long story, he’s fine) but after that we celebrated on our own. Our way. After his grandparents visited with some little toys and crafts for his goodie bag (in lieu of candy), if I could have added large hinges to the wheelchair ramp and raised it like a drawbridge for the rest of the night I would have. We carved our pumpkins, we baked our seeds, we watched our Bruins (big win!) and soaked in being together as a family. 

Halloween can be a tough one for us. So we just stopped doing it. You guys do your thing with your candy and haunted houses and trick-or-treating, and crazy far out costumes. 

We’ll be at home, in our hoodies, being a family. It doesn’t always look like everyone else’s, and it can be vary isolating. 

But At least we have each other. 

Hoppy Halloween from the Olson & Son Hopyard

9 Years of Being Called Dad.


Nine years ago today. 9:06am. After 13 hours of labor Karin gave birth to Ben Olson.

He had already passed away hours beforehand. We lost him before we ever really got to meet him.

Through our grief on that day, Karin and I appreciated the care, and support provided by doctors, nurses, and the hospital minister as they gave us the gifts of 8 hours with our son. a day to spend in the labor room, holding him, telling him how much we loved him, introducing him to both sets of his  grandparents.

They gave us the time we needed to say goodbye.

But the greater gift given that day wasn’t the grand gestures, the pictures, the clothes Ben was dressed in while we stayed in that room, the footprints in a decorated memory box to take home with us. Those nurses, doctors and other hospital staff gave us what we needed to hear,

They called us Mom and Dad. They gave us the title that we needed to hear.

“You’re doing a great job Mom!”

“Do you want to cut the cord Dad?” and they never stopped calling us that.

Because Karin and I became parents on this day, September 22, 2006. 9 years ago today. We didn’t know at the time that we wouldn’t be able to bring a child home with us for another 2 years and 8 months when Liam was 153 days old, but we knew that we had had a son. His name was Ben and to show him the respect he deserved we needed to believe, as hard as it may have been when walking out of that hospital only with each other, that we were parents.


About a month ago this article popped into my Twitter feed. “Don’t Call me Mom if You’re Not My Child”  written by a mom who took offense to the nurses in a hospital calling her “Mom” while her son was in for an outpatient procedure. It’s been bugging me ever since I read it, but today looking back on Ben’s birthday crystallized why. It’s snarky and angry which I usually like, but is directed at people just trying to do their jobs and help to make people feel comfortable. I know plenty of parents who agree 100% in the sentiment. Parents of neurotypical children and parents of children with disabilities alike. Parents who mean a great deal to me, who I respect a great deal, and who have helped me through some of the toughest of times. Parents though, who all have at least one child who has the ability to call them Mom, or Dad.

Not everyone has that.


Being Mom and Dad to Ben has never been easy. It has been heart breaking, but it has also made us better parents to Liam. After the birth of Ben, along with 4 miscarriages and also an unsuccessful IVF/PGD attempt by the time Liam was born Karin and I were ready. Ready to take those titles of Mom and Dad and grow into owning them no matter the circumstance of our child’s health. During the time while Liam was in the NICU we reveled in being called Mom and Dad by the dozens of staff and personnel calling us by the titles we earned. (If I went through the years of schooling it took to get a Phd I’d be that jerk who wants to be called “Dr.” too.)

As Liam got older and we spent more and more of his life in and out of hospitals it became clear that the ONLY time that Karin and I would ever be called “mom” or “dad” was going to be by the nurses and staff in the intensive care unit. Liam communicates with us in ways that only we can understand, but he’s probably never going to be able to say those words. Programming an iPad to say it when he hits a switch is nice but it isn’t the same. I’m Ok with that. As I said, Liam and I “talk” in other ways. But hearing it from a human voice when they tell us that they were finally able to get the central line in place and Liam had access for the meds he would need to keep him from dying? Or the recovery nurse after any one of his many life saving surgeries? Or the PICU nurse who sat in the room for every minute of her shift because there was real concern that he had a heart attack due to the septic shock?  Yeah, I’ll take those “Mom & Dad”‘s. Any Day. Unlike the author of the article, for some of us, it does take a village. The hands and help of people who have saved my son’s life can be a part of my village anytime< along with the people who brought him his lunch and the people who kept his room clean. There’s room for lots of people in my village.

Nine years ago today Karin and I became a Mom & Dad. I don’t care if you’re my kid or not, every person on this planet could call me Dad. It’s the only title that really matters to me.


Ben, your Mom and I love you and we miss you every single day. Thank you for sending us the messages you send and in the way that you send them. Someday I’ll share our secret with all of these people reading this. They’ll have to buy my book about it first. (although a few of you out there already know what that is. very few) Thank you for being such great big brother and gaurdian angel to your little bro Liam and always watching over him. I know that you know that we tell him about you all the time and he is always with us when we go and visit you resting next to your Great-Grampa.

Happy Birthday little viking. I love you.



He just keeps proving them wrong. 

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

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

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

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

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


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

Final day for orders. 


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

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

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

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.


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.




“Hi Mom”


“I love you”


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

It’s about timing.



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

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




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 because it is the “fundraising arm” of 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.


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.


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.

Picking Our Battles

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

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

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

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

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

It was a battle and we told her so again.

It was a battle that we won.

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

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

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


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

A battle in every sense of the word.

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

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


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

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

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

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

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


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

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

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

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


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

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

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


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

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

And we always win.  We have to.

Our son’s life depends on it.

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.