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.
And his name is Anton.
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)
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.
And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…
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!
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…
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.
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:
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 – email@example.com or 617-720-2880
Directions and parking suggestions can be found at www.dcglaw.com
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.
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.
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.
They didn’t start that way. They started as Karin’s tea roses. Barely wider than the smiley face vase they arrived in, the small plant with four bright yellow flowers was a “just because your my sister” gift from her older sister who lives in South Carolina. They immediately found a home in the front window. A window that sits just a few feet from Liam’s spot in the living room, and by default, a few feet from his ventilator.
It takes humidity. The breaths of a ventilator are dry, dry enough in fact to dry out and damage lung tissue without humidity. A small humidifier sits below his ventilator and warms water into the tubing or “vent circuit” about three feet before Liam’s trach. The closer to Liam’s internal temperature you can make the water the better, but like any treatment it’s all about balance. Warm air inside the tube with colder air around it means condensation because science. Instead of moist air we get plain old water. You know, liquid, the stuff you drown on if it makes it’s way down a tube directly connected to your lungs. So you see the problem. The solution? The condensation cup. (Someday I’ll even explain the HME or “external nose” Liam wears when on his portable vent without a humidifier)
Listen, I’m pretty lazy. When the little cup needs to be emptied out every few hours (even more in the dry winter months) I could walk it all the way into the kitchen or bathroom, or I could pour it into almost anything else I can find that could fit three oz. of water like say this conveniently placed vase of flowers on the window sill. You do the math. It was over a week old when asked Karin if she was doing the same thing and it was then that we realized that this plant was not only surviving but thriving only on Liam’s breath.
As a blogging parent it’s my job to over emphasize and find meaning in these little things. I mean technically most of the water is the sterile water we pour into the humidifier and even that is into his inhalation side of the circuit and not the exhalation tube but every single drop of the water given to these little tea roses spent time in Liam’s external “airway”.
There are over a dozen buds getting ready to open now. At least a dozen have formed, grown, dried and fallen off. The cats took two weeks before they stopped eating the leaves when we weren’t looking. The below average temperatures we’ve had in the past month meant the radiator below attempted to kill it with heat and dryness to no avail. I’ve never seen a plant sent through the mail last this long.
This plant has the strength and determination of Liam within it.
We’ve only known a couple of months of life without a ventilator. In his first days enormous machines whirred and alarmed next to his isolette. They saved his life. Machines. Robots. Again at 7 months old after a few months on a nasal cannula the same huge machines saved Liam’s life again. Robots. Wiring, circuitry and plastic, can be beautiful. Liam wouldn’t be here without any of it.
We have small machines at home. Liam’s machines. Wiring, circuitry and plastic.
And every breath they help breath into him he breathes life into them.
It can be beautiful. As beautiful as a dozen little yellow tea roses.
It’s hard work being five years old.
I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.
The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.
It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.
And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.
Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.
I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.
A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).
We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.
The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.
It’s time to make a change.
What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.
Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.
I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.
Today is Liam’s 5th birthday.
I don’t have any words.
I have all the feels. I have a whole bunch of happy tears. I have more pride in my little fighter than I thought humanly possible.
My Big Boy.
My five year old son.
How the hell did that happen?
Many of you, my wonderful readers, are close family and friends and so are well aware that my dad is a pretty talented guy. A painter, an illustrator, a professor, but I think most important to him he is a potter. As hard as he works making beautiful pottery, he has neither the time or the patience to fiddle with a blog or twitter, constantly taking and uploading them, or messing with the settings of his Etsy shop.
So instead, Karin and I will take care of all of that stuff. This way he can make pottery and we can take pictures and videos. We can start a twitter account and maybe an instagram, and we can maintain his news blog and let you all know where you can get your hands on some of the finest hand-made pottery around.
If you would be so kind, please visit Clam Alley News. While you are there maybe leave a comment. It will let my dad know that increasing his online presence is a worthwhile endeavor. Over the course of the next month or so we’ll be adding things like informative videos, a whole new online store and other informative sections to a new website to give everyone a better idea of what Clam Alley Pottery is all about.
Thanks, and now that I’ve bragged about my dad I can get back to using this space to brag about Liam. Talk to you soon.