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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.

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

 

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.

 

 

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.

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.

Liam the Ninja and his new Belt. 

Editors note: Look I didn’t mean to take nearly 6 months off of regular blogging. It just kind of happened. But I’m back now. I mean it, but before I get to any of the cool new stuff I want to blog about I have to tell you this story first. Because it is an awesome story, and also because I should have posted it last October right when it happened. So let’s just move past the fact that I haven’t yet posted in 2015 mmmkay? thanks.

 

 

We almost didn’t make it to see Walter at all. (You’ve heard me talk about Walter in my speech here) The President was visiting Rhode Island for the first time in a generation that night, and with most of the exits off the highway between providence and the airport in Warwick manned by state troopers, and traffic at a near stand still for the evening, we were 25 minutes into the drive and still less than 5 miles away from our house, and close to 10 miles away from our destination. Karin floated the idea out there.

“I’ll just text Walter that we aren’t going to make it. This is nuts, it’s going to be over before we even make it there.” She said.

“No, Walter has been talking about this for months. We have to make it.” I said through gritted teeth and clenched jaw as my frustration at the interstate becoming a parking lot grew. “It obviously means so much to him, we have to make sure Liam makes it there.”

After ten years of teaching karate, Walter, Liam’s nurse for the past 4 years, had asked if we would bring Liam to the final class of his closing dojo. We were happy to be a part of it for Walter. Happy that it meant so much to Walter that Liam attend, but we had no idea why Walter wanted him to be there, and why he was so excited that we promised to be there. It wasn’t much of a choice really, after Walter had attended so many of our own family events, birthday parties, thanksgiving dinners, and milestones like first days of school, it was now Liam’s turn to be at something that meant so much to his big buddy Walter. Our full-time nurse, and part-time ninja.

“You made it!” Walter couldn’t have been more excited when he saw us wheel Liam into the room. About 25 students of all ages, in their Gis, kicking and punching in an impressive display for their family and friends around the room, while we tried to sneak in along the wall and take a place in the back so as not to distract from Walter’s night.

Walter wouldn’t have it though, and only a few minutes after we got settled the sensei addressed his students for the last time. A few minutes in to an already emotional speech Walter started telling the whole room about his patient and buddy Mr. Liam.

 

I don’t remember where Walter was going with the start of “it’s unfortunate … ” before the video cuts out but just know that it was incredibly sweet and inspiring words about Liam’s strength and determination. And then, in what was a total surprise to Karin and I, Walter presented Liam with his honorary Black Belt.  Embroidered with Liam The Lion Olson and a certificate in Japanese and everything.

Yes that’s right, ‘In recognition of his perserverance and indomitable spirit fighting the odds, and proving that nothing is impossible with hard work and the support of others’ (according to the translation side of the certificate) Karin and I are now the proud parents of a black belt, and we were blown away by the kidness. It was just Liam’s nurse Walter deciding to do something nice. Something he didn’t have to do at all. Something that still means the world to us.

For the remainder of the evening all of the students from children to adults in the class would make their way up to Liam to meet him. Every one of them bowing and calling him ‘sir’ as he was a black belt now, a title worthy of respect, while Karin and I, blown away by such a generous gesture and the incredible speech that Walter gave about Liam’s strength and determination, tried to figure out how we would ever be able to thank Walter and his entire family for such an evening.

An evening we almost didn’t even make it to.

I’m so glad that we did.

Thank you again Walter, Amy and the all the kids. You guys rock and Liam is a lucky kid to have you all in his life

 

 

Liam meets Santa

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

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

*****

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

 

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

 

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

Evelynn had to explain.

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

******

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

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

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

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

*****

And then Santa arrived and met Liam.

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

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

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

It was downright magical.

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

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

 

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Because They’re Trying

The morning after the events of my last post Karin and I still didn’t know what was going with Liam’s first day of school and whether or not he would be afforded the orientation process that all the other incoming kindergartners were having. I had been hoping that after hearing the messages I had left the day before I would have recieved a call early in the morning but when I didn’t hear anything by 9am I knew that wouldn’t be the case. So Karin and I went to the school to park ourselves in front of the principal’s office until we could speak with her about our concerns. The school pre-k program social worker (poor thing) didn’t have any idea what she was in for when she walked by and waved hello.

“Can we talk somewhere, right now?” I asked.

*****

Anyone who knows Karin and I knows that we are not confrontational people, but when it comes to the full throated advocacy for our son and his needs we will be as confrontational as we need to be, and we have a lot of practice. The medical field has trained us well with, daily rounds in the intensive care unit, family meetings, and the lifelong coordination of multiple specialists Karin and I have more practice than most at setting expectations with the professionals in charge of Liam’s care. We have to.

Liam’s life depends on it.

****

The meeting was tense. Tension brought on entirely by my anger at the situation and the fact that I am a big, loud oaf when I’m angry. There of course was no violence or inappropriate language, but I could tell by the look on her face and by the taps on my leg by my wife that I may have gotten louder and louder as I listed my grievances. I really didn’t want to start Liam’s school career being the angry dad but it was necessary. After Karin and I laid out our case for why changing Liam’s school schedule at the very last possible moment, and denying him the chance at the orientation process offered to the other incoming kindergartners was unreasonable, unfair and quite possibly illegal, the school social worker brought the principal over immediately and helped to facilitate a quick meeting. The principal, while understandably busy given that it was the first day of school met with us quickly. It was a shorter meeting than I had expected but that is to the principal’s credit. Understanding that we were angry even though she didn’t yet understand why, she accepted that a series of mistakes were made on their end and instead focused on what she could do to make it right.

Liam’s orientation was scheduled for 10:00 am the following day.

*****

A few times a month Karin or myself (mostly Karin) will discuss treatment options with Liam’s neurologist over the phone. Explaining symptoms, relaying changes in medicine doses, what to watch for to see if they’re working, and what to do if they aren’t. Just as often, Karin or myself (mostly Karin) will speak to our pulmonogist over the phone to discuss breath volumes, peak inspiratory pressures, and overnight oxygen settings. Misunderstandings and mis-communications over the phone are luxuries that the Olson family cannot afford. We take notes, we ask questions, we make sure we understand what is expected of us and of Liam. It is a relationship that we have built by open and honest communication. A relationship that we need to have with Liam’s educators as well.

*****

Friday morning Liam was able to meet with his teacher, the principal, two of his therapists, and the superintendent of schools for a tour. He was able to see the lift that the school department is still working to get operational, but also to check out the alternate route that he’ll have to use in the meantime. It isn’t ideal but they’re trying, I think they know now that I won’t let them forget about it. The orientation, from what I hear since I was at work, I wish I could have been there, was great. Liam was able to meet the first and second graders that will be in his class with him this year. The principal and his teacher explicitly discussed with Karin what the most effective means of communicating with each of them will be moving forward and they even thought of some things that will help Liam’s nurse do his job easier at the school.

They really are trying.

*****

I don’t believe for a second that someone intentionally or maliciously decided to deny something from my child or his classmates. It is, after all, reasonable to change Liam’s first day since there are first and second graders in his classroom, and that way they can begin their daily routine a week earlier. But the time to make that decision was three months ago so that those same kids can have their orientation process and the expectation can be communicated in plenty of time. Three months ago when they could think through all of the issues it may or may not create for the portion of the student population that even the slightest change might effect in ways that people not living this life may not realize. Three months ago, NOT the day before. No one meant for this to be unfair but it was, and it’s my job to point that out to them. And I don’t feel bad for pointing that out to all of you as well while it was happening.

I had no problem writing about all the wonderful parts of Liam’s interactions with the school system in our town thus far. His first steps, his making friends, his wonderful penmanship, and even the first time he got in trouble.

It’s why I also had no problem writing about their mistakes when they let us down.

72 hours ago I had little hope for a positive and exciting first day of school celebration, but the actions of the school in the days following, showing us that they really are trying to supply everything they can for his education, as complicated as that is, have turned me back around.

We’re excited about Wednesday again, and while I don’t think I have anything to say I’m sorry for, I do have to say thank you.

The Names of Things

Liam’s agency and dignity being among our top priorities as parents, it’s important to us that , whenever possible, Liam get to choose what is done to/for him. Unable to speak, or point, or  grasp, Liam communicates his wants with eye gaze and head nods. He picks out his outfits every day (between choices given him by his stylist.) Sometimes he decides in an instant. Sometimes he needs a little while to think about it, and sometimes he just can’t be bothered with the demands of making his own decision. He’s five. I’m gonna just assume that all that is universal.

The thing is, when Liam is really alert and engaged in the decision-making process, his preferences are apparent. His attitudes obvious, even strangers would have no problem recognizing his meanings. So it was the first friday night in June during the Dream Night festivities at the Roger Williams Park Zoo. His wheelchair parked in the gift shop, in a corner to stay out of traffic, Karin and I would each approach with pairs of stuffed animals.  A bracket style gladiator tournament to find the winning souvenir  with Liam’s head turns and eye gaze applying the thumbs-up or down decision on just who would come home with us that night.

 

Elephant vs. Zebra., Monkey vs Buffalo, on and on it went until the winners were then put in again. Decision after decision until we were left with a winner.

An Anteater.

Liam’s anteater.

And his name is Anton.

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*****

There are an awful lot of stuffed animals in our house, and they all have names. Karin is the namer of things, and she’s incredibly good at what she does. We have lions named Levon, Lemar, Levi and Lenny (and Frodo, and Ribbons, and Roar-y). Penguins named Gordon, Gordon Jr. and Freddy. A whale named Whale-n Smithers, and even a watering can shaped like a pig and whose name is Rusty. Everything has a name around here. We have a dragon named Douglas, and a stuffed Dinosaur from a hospital gift shop named Enterobacter-saurus after the bacteria in his blood stream from his burst appendix that kept Liam in that damned hospital.

*****

But right from the start Anton seemed different. Liam seemed a bit more attached to the stuffed friend he had to tell his parents he wanted three times before we believed him. He was one of only two stuffed animals that made the trip down to Jersey with us last month. (The other one also in the picture below, LeMar the Lion, has been in Liam’s bed with him since he was ten days old. A gift from his Uncle Phil and Auntie Jannah)

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And before long it would become apparent to us that Liam had decided that Anton was his favorite friend to sleep with. Months now, it’s been Anton, through adventures with flooded diapers and trips in the washing machine and dryer. It’s Anton. So much so in fact that eventually I just had to post a picture to Instagram about it.

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And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…

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See it? That alone, I thought was a pretty cool thing. Cool because it’s been fun to interact with the zoo on twitter and instagram every time we go there, but also cool because they’re right. Anton is a good name for an anteater.

As cool as I thought all that was though, this morning things got a whole lot cooler. This morning I got an email from the good folks at the Roger Williams Park Zoo. An email with the subject line Anton the Anteater.

Here, I’ll let them tell you, Here’s the text of the email I got.

Hi Eric –

Firstly, I would like to let you know that here at the Zoo we read your blog and it makes us so proud to be able to offer Dream Night, as well as being a space that you and your family love to come to. I noticed on Instagram that you had recently visited the Zoo, and your son Liam had picked out an anteater toy, named Anton. Well, it is a happy coincidence that we recently had an anteater birth, a little boy!

So, in recognition of the support you’ve given to the Zoo over the years, we would like to name our newest addition Anton as well, and invite your family (original Anton included!) to come visit the Zoo as our guests for the day.

Let us know when you’d like to schedule your visit, and thank you for your continued support!

Anne

 

MIND. BLOWN.

There are so many reasons why this is probably the coolest thing that has happened since I’ve started this blog. I’ll only get to a few …

First: I was already almost dancing around our house this morning when I read this since it was just plain awesome to hear that an animal at the local zoo was being named indirectly by us, and by extension Liam. The Roger Williams Park Zoo has always been such an important place for us as a family (as new readers can read about here, here and also here) but then Karin started sending me more information that she was reading about our new friend Anton from the Zoo website and I got even more excited since it seems Anton himself is kind of a big deal. (from the linked article)

Zoo Executive Director Dr. Jeremy Goodman commented that the birth of a male giant anteater is a significant occurrence in captive populations, because there are very few males in the Association of Zoos and Aquariums (AZA) Species Survival Program.

Corndog (Anton’s Mom) was selected to come to Roger Williams Park Zoo to be bred with Johei based on recommendations made by the AZA. Giant anteaters, native to grassland and lowland tropical forests in Central and South America, are listed as “vulnerable” by the IUCN due to loss of habitat and hunting. It is estimated that only 5,000 animals remain in the wild.

Besides, How can you not fall in love with something like this…

 

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

 

Second: As goofy and silly as Karin and I can get with the naming thing. Names mean things. As Anton the anteater makes his way in this world and is transferred to another zoo somewhere in the hopes that he will help the population of his species, he will continue to be called Anton. Liam will always have that indirect connection to him. I realize that this may seem like I’m greatly overstating  things but like any parent, I often think about the impact that my son will have on this world. The waves of influence that Liam and his unique position and perspective will create. The fact that my wife’s love of alliteration and of naming things (ESPECIALLY for her son) have become one of those waves, and that it will continue to go on rippling, fills me with happiness and pride.

Names have power. In the Patrick Rothfuss novel The Name of the Wind (which I highly recommend) he writes…

Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts. There are seven words that will make a woman love you. There are ten words that will break a strong man’s will. But a word is nothing but a painting of a fire. A name is the fire itself.

Yeah, in the novel he’s referring to a type of magic. I still think it fits and the line quickly jumped into my head this morning as I thought about all of this, because no matter the meaning of the name Anton, the story behind him coming to it will always mean something to me. To my family.

To my boy.

Third: I’m already living vicariously through him. I assume the AZA will probably end up transferring him somewhere when he’s old enough to breed. Maybe we can visit him. San Diego? The Bronx? Maybe someday we’ll decide to plan a whole vacation to wherever little Anton ends up having kids of his own. We’re zoo people. Why not take a vacation to see other zoos?

And finally, just because it’s one more story that we get to tell about how lucky we are to be the parents of this wonderful boy of ours. Things like this would obviously never happen without him. His influence and the energy that he puts into the world has continued to come back to us in surprising and exciting ways. This is a story that I will forever enjoy telling.

The time my son and my wife got to name the new giant anteater at our local zoo. How cools is that?

And it’s all in a name

A name like Anton.

 

Solo Exhibition at DCG LAW, Boston

Eric Olson:

I’ve never “Reblogged” someone else’s post before, but how could I not want to help my Dad who is himself helping Liam.

My father is an impressive man. A Potter, a painter, a bonsai tree maker. Next month, thanks to the good folks at Donnelly, Conroy & Gelhaar LLP, my father, Paul Olson is having a retrospective solo exhibition in Boston, with an Artist’s Reception June 3rd.

If your anywhere near Boston please feel free to attend, and whether you’re local or not please feel free to tweet, blog, or (based on my recent referral stats, most importantly) Facebook this post to spread the word.

The proceeds of any paintings sold will benefit The Liam the Lion Fund. The fund Karin and I created to assist with the larger medical and equipment needs of Liam’s care.

Originally posted on Olson Paintings:

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Thanks to the good folks at Donnelly, Conroy & Gelhaar LLP, Paul Olson is having a retrospective exhibition in Boston, with an Artist’s Reception on:

Tuesday, June 3rd, 2014,    5:30 p.m. – 7:30 p.m.

Donnelly, Conroy & Gelhaar, LLP

260 Franklin Street, 16th Floor

Boston, MA 02110

Please RSVP by May 28th to Chelsea Lord – cem@dcglaw.com or 617-720-2880

Directions and parking suggestions can be found at  www.dcglaw.com

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announce

This show includes landscapes of Rhode Island, steel construction of Providence Place Mall, tree drawings done at the Arnold Arboretum and a series of portraits done in his painting class at Massart.

jamie

All proceeds from sales will go to the “Liam the Lion Fund” to support Paul’s grandson. Learn about Liam at http://www.pressuresupport.com.

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Tired.

About 12 hours from this writing will mark 8 days since Liam has used bottled oxygen. That’s the longest he’s ever gone without O2 in his lifetime.

Last Thursday was Liam’s 4th IEP. Talk of kindergarten and adapted physical education. Goals, therapies, benchmarks and progress reports.

Spring is happening and the hops are poking out of the ground.

In just the last week there been so much going on that I should be blogging.

But I’m tired.

Though no one’s fault at all, circumstances left us without a nurse for the past week as well. I’m not going to explain all the little things that changes for us and our routine because, again, I’m tired. Karin and I are more than capable of taking care of Liam without nursing, (Although, while I am positive that Karin would be just fine doing this without me around, the opposite is so far from true. I’d be lost) round the clock care without any breaks will wear you down.

So while I’d love to blog about oxygen, IEP’s, and the need for us to learn to trust more nurses (in case our favorites can’t work), I’m tired. Liam seems to be asleep, and Netflix now has some Green Lantern cartoons that I can watch until 4am when Karin will get up and I get to go to bed. Watching cartoons is easier than blogging and like I keep saying.

I’m tired.

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