Liam

Let’s Go Fly a Kite

I remember flying a kite as a kid. I also remember crying when inevitably the string would snap, or the kite would get stuck in a tree. So even though I don’t remember kite flying being the most fun I’ve ever had, it was something that all kids do.

 

Or so I thought.

 

So when Karin mentioned over breakfast that she had never flown a kite before, our plan for the day changed.

mom and liam

Karin and Liam were both going to fly a kite for the first time in their lives. I on the other hand, and without expecting to, was going to have more fun doing a basic childhood activity than I thought would be possible.

 

liam kite flying

And that’s just what we did. Getting these awesome photos was just an added bonus.

Family kite flying

Don’t worry. I’ll still get to the highlights of 2015 post.  Today was just too much fun NOT to post about.

My Bona Fides. 

Yes, I am the Eric Olson in the article, and yes I am the 2014 non-clinical recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care, and yes the reason I’ve started writing for, and posting to, the blog again was because last week when I was told this was printed in my hometown newspaper the East Providence Post, I wanted to make sure that I didn’t make a liar out of whoever wrote “He regularly updates his blog,” since they were right about everything else in the announcement.

Yes, I won an award. I’ve never won an award before, and I am really proud of this one. Even now, a month and a half after being presented the award (and that was a month after I was told I had been selected the winner), I am still kind of amazed and speechless that I was even considered for this honor, and there are a bunch of different reasons why.

1. Reason the first (not in ranking of importance, just a listing). This award, as the article mentions and as Mrs. Welch noted in her speech during the presentation in January, was not about my work, at my “work”. Yes I work IN the Women & Infants Hospital but I work FOR (meaning who signs my checks) a large management subcontractor managing the kitchen. I am decent at my position but in my day job I have little exposure to the care of our patients other than providing safe and tasty meals while they stay with us (although, as I tell my staff, whether or not you have direct patient contact, ALL hospital employees impact patient and family centered care). Instead this award was for my work on the hospital wide advisory council for patient and family centered care, where the perspective I bring is more often as the father and husband to former patients, rather than a department manager. It was for my presentations and speeches to Pediatric Grand Rounds, and the Follow-up Clinic conference on NICU dads.  It was about the work I did attending the Institute for Patient and Family Centered Care National Seminar last year. It was about the work I do sharing Liam’s story with you. Right here. Because without this blog and all of your responses to it, I don’t think I would have had any idea that Karin and Liam and I had a story worth sharing, a point of view that had any value, or that our experiences could help people and systems of care for anyone else out there with a family member with complex medical needs.

2. The second reason that this award is so cool and I’m so proud of it is because it isn’t just about me. I of course would have no story to share, No motivation to help, and no confidence to stand and speak were it not for my amazing wife and this incredible little boy that we are lucky enough to have in our lives. I often say at my speeches that I had never been able to speak in front of groups before Liam was born but get me bragging about that kid and I could speak to hundreds, Thousands! And I would do it for hours. I’m not the award winner, we’re an award winning family.

3. Third, the award came with a little money, and as soon as Karin heard that she insisted that I use it to get something just for me. Not to use it all for heating oil and car maintenance but to splurge on something that I’ve been talking about getting for the past 6 years but could never justify the expense. Even though most of it did go to those bills, I was able to save enough for my own award and it means so much to me.

Finally I was able to get my next tattoo. And every time I look at it or show it off I remember where the money for it came from.

If you need a tat in Rhode Island go see Greg Arpin at Unicorn Ink, he does incredible work. This came out better than I could have imagined. Works out pretty well when your kid has a badass nickname.

 

4. But I suppose the biggest reward of receiving this award is that I’m beginning to actually believe that I am an advocate. That I’m legit. Ive got my bona fides.

The award is knowing now that I can do this. Not only because it’s what I am so passionate about, but someday, if I can figure out my way in, because someday it will be the way I make my living. This award is recognition that I am on the right path for that.

Recognition that I have a story, the skills, and now the confidence to tell it, only it isn’t my story,

it’s Liam’s story.

I’m just the guy who he awarded the opportunity to tell it.

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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It wasn’t supposed to begin with.

It wasn’t supposed to begin this way.

It was supposed to be a momentous occasion when the boy who wasn’t supposed to make it to his first birthday made it to his first day of kindergarten.

When I was a kid not everyone attended pre-school or a pre-k program. Kindergarten was the first day of school. THE FIRST DAY OF SCHOOL. For everyone.

This boy of mine who was so early for the day of his birth and so very “late” for so many things after that (first steps, first tooth, heck his first poop was after 43 days) was going to be on time for one major thing in his life. To do something at five and half years old that every other five-and-a-half-year old was doing.

The first day of kindergarten. At five years old with all of the other 5 year olds. On the same day as everyone else.

Now he’ll have to start school a week late. They robbed us of that milestone.

****

It began, as so many of these things do, with a phone call. A call from the principal last week to let us know that the lift that was being installed to bring Liam’s wheelchair up and down the short stairway to the gymnasium and music room wasn’t going to be ready for the first day of school. Liam would still have access to those rooms but would have to leave the building and re-enter through another door to get there until the lift installation was completed. She explained that she understood how this was not ideal and that it was a priority to be fixed and that making Liam go outside was unacceptable. She also told Karin  ‘come to my office next week on orientation day and I’ll show you his classroom and the lift and the doors he’ll have to use to go in and out.’. Remember that last bit. It’ll come into play later.

So yeah, it’s a huge pain and it isn’t fair to Liam to ask him to go outside to get to his classes when it rains, or it gets cold (it is New England) but let’s face it, we are going to have to work with these people for years and years, and throwing a fit about it doesn’t do us any favors yet. So we remained calm and decided that we would set our own personal deadline for them and that if we didn’t see any progress two weeks into the school year we would pursue the matter further. Besides, the fact that the principal called us to talk to us about it two weeks before school even started made us happy that at least they were communicating with us well.

Or I guess they were.

*****

It wasn’t supposed to begin this way.

I didn’t want to begin my son’s first day of school as the angry, demanding parent of the kid who needs some special attention and accommodations. If you start at a ten there’s nowhere to go for when the big problems come up . To build a reputation as a reasonable and understanding parent who understands the challenges that educating a child like Liam can present. By starting the school year with this many big problems they are robbing me the opportunity to build that reputation.

We were supposed to be celebrating Liam’s first day of school.

It wasn’t supposed to begin this way.

******

Tomorrow is orientation day.  I know this because I am looking at the letter that the school department sent to us in May. It was the last time we received anything from the school department that mentions the start of school. And I quote…

This year Kindergarten begins on Wednesday, September 10th; however, on Thursday, September 4th, we will have a “Welcome” meeting at 10:00am, where you and your child will be invited to meet the principal and teachers, visit the kindergarten classrooms, and discuss the expectations of kindergarten for your child. In addition, while there, we require that you schedule a 30 minute appointment so that the teachers can administer a short screening test. Appointments can be scheduled Thursday, September 4th in the afternoon, or anytime (9-3) on Friday, September 5th or Monday, September 8th. There is no school on Tuesday, September 9th.

Well that was the last communication we received about the start of school until the phone call today. It’s always the damn phone.

This time it was Liam’s teacher. Knowing that in our IEP we discussed a modified schedule (going in late) to start the year she had called to discuss what time Liam would be coming to school. During a frustrating conversation trying to decifer what the best time for the class would be (during a classroom or activity change so as not to disrupt things more than we already are)  the teacher and Karin settled on 11:00am. Which was when the teacher then explained that she’d see him in class for his first day of school tomorrow.

Tomorrow?

No, no, no tomorrow is orientation day. Our “Welcome” meeting. The letter is on the fridge. The dates are circled on the calendar. The 10th is the first day of school. I used a vacation day from work for it. We called in favors to get nursing coverage because our nurse needed the 10th off for an important obligation. We were augmenting Liam’s sleep and seizure med schedule to prepare. We scheduled doctors appointments for this week. We were doing everything we could possibly do to make sure that Liam doesn’t miss the first day of school, including planning on bringing him in at the normal time on the 10th and seeing how he did with a full day on his first day. The 10th was the first day of school. Tomorrow is orientation day.

“Well not for the special education kids. The inclusive classroom first day of school is tomorrow.”

And that is how the school department decided to communicate to us that Liam’s class was different from all the other kids. Liam’s class didn’t get any communication. Liam’s class didn’t get to have a’ “Welcome”  meeting with their teacher and principal to discuss the expectations of kindergarten for our child’. Liam’s class didn’t get to fully prepare themselves for the first day of school. Instead we got about 20 hours of notice.

Karin explained that we have friends whose children are in the same class and also expected to begin school on the 10th, including one particular child who would benefit greatly from seeing his classroom before the start of the school year. The teacher seemed put off not by the news of this huge miscommunication complete and total lack of communication with families that need it most, but by the fact that she was now going to have to call all of the incoming kindergartener’s families to let them know about the change as well. Sure enough our friends got their own call letting them know that their child’s first day of school was not next week but was in fact tomorrow.

It wasn’t supposed to begin this way.

*****

At Liam’s pre-kindergarten check-up yesterday his pediatrician reminded us of a conversation we had when Liam was only months old about realistic expectations of his life and whether or not he would survive his first year and how remarkable it was that he was about to start kindergarten. None of this changes that. Liam is remarkable. He is remarkable enough that his family deserves to get the communication to adequately provide for his education. I know this BECAUSE EVERY CHILD AND THEIR FAMILY DESERVES THAT!

I don’t want Liam to be treated special. I don’t want us to be treated special. I just wanted us to be treated the same as everyone else. To be told what is going on. To have the same chance to discuss expectations that every incoming kindergartener’s family who does not need the services of special education got to enjoy.

It wasn’t supposed to begin this way.

*****

I’ve called the principal three times since then. Three times since Karin found out that not only are we now not ready for Liam to attend the first day of kindergarten, but that I won’t get to enjoy the celebration of the milestone with him unless we wait and make him miss the first week of school, and that the stress and phone calls of ensuring competent and qualified nursing care was all for nothing, and that we wouldn’t be afforded the chance to see Liam’s classroom before hand. or at least I tried to. the number seems to be for the whole school, which doesn’t really matter since no one ever answered it. I called her once immediately after I found out. The call went straight to voice mail. Realizing that it might still be the end of everyone’s lunch hour I waited an hour to call back.This time, I politely but sternly explained that I find this level of communication unacceptable,  I reminded whoever answered that voicemail that less than a week ago the principal told my wife that they would see each other and have time to meet on orientation day giving us no indication that it was actually the first day of classes and that Liam was expected to attend, I explained that I expected a call back.

I didn’t get one.

I called the pre-k program Liam attended last year which is in the same school building as Liam’s kindergarten class and asked if they could help me get in touch with the principal and they gave me the same number that I was already calling.

I called again an hour and a half later, and left another message asking if we should even attend the orientation. I asked if we were going to be given a oppurtunity to see the classroom and the lift before sending Liam into school. I asked if perhaps the teacher had been mistaken because again, we had just spoken with the principal last week and she gave us no indication of this being the first day of school, and the letter we received from the city explicitly told us this was not the first day of school. I explained that it was very important that I get a return call answering those questions for me.

I’m still waiting by my phone.

So not only did this entire problem begin with a lack of communication but apparently my child’s school believes that the remedy to the problem they created is to provide even less communication.

It wasn’t supposed to begin this way.

*****

Maybe I set my expectations too high. I’ve heard so many of my friends who have children with special needs complain about the battles they’ve had to have to advocate for the services and attention that their children need. Based on the amazing job done by the staff of Liam’s pre-K program (IN THE SAME BUILDING AS WHERE HE IS GOING THIS YEAR)  I naively thought that wouldn’t be the case for us.

“Not in our school!” I used to say to anyone who would listen. “The school department has bent over backwards to try to get Liam the things he needs!” I used to say.

#notallschooldepartments

I guess I’m the fool.

And in one afternoon, I have lost all of my faith in the teacher responsible for my child’s education for the next three years, and the principal who supervises her, that they will communicate, needs, issues, safety concerns to us regarding Liam’s education. They have their work cut out for them trying to earn it back. Miscommunications happen. Maybe the city didn’t mail out the letters they meant to for the few families of incoming kindergarteners in the inclusive special education program. But then to add insult to injury you refuse to return three phone calls about it? Not about some event in a few days or weeks but refuse to return phone calls regarding something as momentous as a first day of school and happening as quickly as less than 16 hours away, and you don’t return the call?

A simple phone call back was all I was asking for. To know what was going on with my child’s education.

*****

I realize that posting this here may put my relationship with Liam’s educators in jeopardy. I’m ok with that. I use this blog to highlight the wonderful parts of parenting Liam, and believe me it is mostly wonderful, but even if the principal calls back at 8am tomorrow and is all apologies, I will not feel guilty about being angry about today and I will not feel bad about sharing it. Because along with all the fun stories about the zoo and road trips to Jersey A great deal of our time is spent in frustrating beurocratic loops of phone calls and excuses with insurance companies, pharmaceutical companies, medical equipment companies and state agencies. Now I’ll have to add schools to that list.

I’ll share it because while I was calling the principal three times today Karin was calling Liam’s durable medical equipment company for about the 6th time about the filters for Liam’s vent that they have on back order that should have been changed out of his vent three weeks ago, and the pulse oximeter probes that are supposed to be changed every week but we haven’t been shipped any new ones in four weeks. That was after she called the state about their problem with the handicapped placard form for Liam’s van and the medical insurance company that denies everything on the first submission (unless it’s something we need a denial letter for so another agency will pick it up THEN of course they drag their feet on denying things).

Frustrating situations like this are the pressure for which we need the support.

Besides, Liam’s first day of school wasn’t supposed to begin this way.

I’ll tell you one thing though, his first day of home schooling will begin exactly as it’s meant to.

And at this point, it may just be next month.

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.

 

Somewhere in the Swamps of Jersey

Ok, not the swamps, instead the rolling hills of northwest New Jersey but if you think I’m not going to quote The Boss when talking about our trip to Jersey well then you just don’t know me at all.

Yes the Olson’s packed it all up and headed south for adventure. When I say packed IT ALL up, I mean it. It makes little difference if we are going camping or visiting family in their home, the packing remains the same. 2 days or 2 weeks and there’s little difference to the list. A CVS, across the street from a Walgreens next to a Target a short walk from where we’re staying? Ha! find me syringes, feeding tube bags, ventilator circuits, or  nebulizer parts on any of their shelves and I’ll eat my hat. No, the whole kit and caboodle needs to make the trip when we travel.

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Actually, make that the whole kit and caboodle . . . times two. Because ventilators malfunction. Ventilator batteries lose their juice. Electrical chords and plastic oxygen tubing can all fail. At any time. We have to be ready.

Ready for anything. Twice over.

At all times.

And so we are.

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The trip was great! We visited with family we don’t see often enough, ate good food, and had a relaxing few days away. We even took Liam to another zoo.

 

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For his part, Liam was wonderful. He endured the ride as well as could be expected considering it was RT 95 through Connecticut. He was well-behaved, turned on the charm for his grandparents, and aside from one late night with an increased heart rate that worried us until we realized it was just gas, stayed spectacularly within his baseline sats and numbers. In a new environment in a mostly climate controlled (dry) facility and only recently making a full transition off of supplemental oxygen these are not small details. I’ll be the first to admit that I get a bit nervous travelling and being away from my bubble. It makes me so proud to see how well Liam travels.

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I hope he keeps it up. Because along with our wonderful trip out-of-town for a few days last week, at the end of my vacation from the day job I was approached by the nursing company that supplies Liam’s home nursing care. It seems they had representatives at the conference where I spoke last month and would like to send us all to Pennsylvania so that I can speak to their national meeting of all of their pediatric nursing directors (they have offices nationwide). Details still need to be worked out so I don’t want to say too much, but they want me to speak and I really want them to hear me, so it looks like our trip to New Jersey was just a dry run for a greater adventure.

We’ll be ready.

Ready for anything.

 

 

 

 

 

Events

They’re not even Current Events at this point. The most recent of which happened over a week ago now, I can’t exactly call them news.  Instead we’ll go with events. Events that have all happened within the past 3 weeks, but are the results of the past five years.

If you follow my twitter feed you already know what I’m about to say. Throwing 140 characters together on my phone is much more convenient to shout something into the ether. A blog post takes a bit of time. Time that could be spent sleeping, or reading, or watching Futurama episodes that I’ve only seen three times already.

But these are significant events, and do deserve their own blog post. They are accomplishments that I never would have achieved without this blog, in both direct and indirect ways. They are accomplishments that (hopefully) have already changed the path my career and ultimately my life will follow moving forward. But enough chatter….

Event the First: Three weeks ago, after a month of emails and two separate interviews, I was asked to serve a two-year term on the Board of Directors for the Rhode Island Parent Information Network. (RIPIN.org). It’s a pretty big deal. My term will start in September. I can’t even begin to express how proud and honored I am to be a part of this wonderful organization as they continue to help all Rhode Islanders by supporting and training parents to be their own best advocates in health care and education.

Two days after hearing the news I was lucky enough to be able to attend the RIPIN annual staff meeting of 115 employees (70% of which are the parents of children with special needs, or are people with special needs).  Humbled and awestruck by the level of excitement, dedication, and positivity in the room I gave myself permission to accept the legitimacy of my story, of our story, and realized that I could add my voice to this group. That along with the nervousness of trying something new, I belonged in that room with those people.

I realized that it was time to get to work.

Event the second: Only a few days after having my mind blown by the enormity of the opportunities that I now find myself given, it happened again.  The very next Monday I gave a speech at a conference on fatherhood during and after a child’s NICU stay. I gave a version of a presentation that I have given before, adding some points on the aspects specific to fathers. It was well received and I’m happy with how it went even if I’ve spent the week and a half since remembering things that I should have written into the presentation. There was a significant number of questions from the audience and while I didn’t check my watch I’m fairly certain that I more than filled the hour I was allotted to speak on the day’s agenda.

But it was during the second half of the conference that I was asked to be a part of a panel discussing the resources available to fathers post-NICU. A panel that the conference organizers wanted me to discuss and focus on this space right here. My blog. PressureSupport.com. To be approached solely because of the writing I do here has made me incredibly proud, (Hrm, So proud, I guess, that I waited 10 days before posting about it here. I’ll be better.) and I think I had some valid points to bring to the discussion but it was the other men on the panel that humbled me and inspired me. Men from state organizations, and non-profits across Rhode Island. Men dedicated to advocating for fathers, their rights, their needs, and their emotional supports.

I truly felt like I had no business even being introduced to sit at the same table. These men all have dedicated their careers and in essence lives to advocate for others. For parents. For fathers and ultimately for their children. For anyone who needs a voice.

For me.

These men, that speech, and being asked to sit on such a prestigious board. Inside of a month all the little small decisions I’ve made in the past 4 and half years since starting this blog, like a timely email to the right person, or a blog post that someone I work with shared on facebook, and deciding that I did have something to contribute to the Women & Infants Hospital Wide Advisory Committee for Patient and Family Centered Care and throwing my hat into the ring for membership. All decisions that had something to do with this blog and all that have led me to this point in my life have all come to pass in these last three weeks.

Not only do I finally know what I want to do with my life, but I’m at a place in my ability, knowledge, and confidence that I just might have also found a way to get there.

Every day since that conference (save for the fourth of July holiday and the Saturday and Sunday after) I have had some form of contact, emails, phone calls with someone who was either there or heard about the speech I gave. I’ve been asked to do more speeches. Tomorrow I have a breakfast meeting with one of the men that I sat on the panel with. Next week on my day off I have another scheduled with a different organization.

It’s all happening now.

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Sometime last year I spoke on the phone for a few hours with another blogger who I respect and admire, and who has worked in this advocacy realm since her daughter was born with special needs, about how to increase my role of advocating not only for my own family but for other families of children with special needs. To turn this passion into a career. To support my family by doing the thing I am most passionate about. To support my family by doing something that I would be (and already am) doing for free. Ultimately the main takeaway wasn’t any specific steps, or classes to take, but only to allow myself permission to accept that our story and my perspective have value. That Liam’s story can change the way a medical professional sees their role, or their own patient’s perspective. That the experiences that Karin, Liam and I have endured can in any way help a family out there going through something similar.

Karin and I have always said that there must be a reason that we were the parents picked to raise a child as special as Liam.

I think I may finally be starting to accept that.

Coming from someone who has never really had the confidence to take risks or stick my neck out there, that is a pretty big deal.

Now it’s time to get to work.

 

 

About a Beard

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Father’s Day morning 2014

Because it’s recently become a FAQ (frequently asked question) and everyone, from co-workers to complete strangers in the grocery store, has a theory on the reason for its existence it’s time to talk about the beard. It isn’t about fashion, it isn’t about trends. It’s not about the hockey playoffs or even the 20013 Boston Red Sox. In fact the beard has only ever been about one thing.

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Fatherhood.

While I can tell you exactly when I started growing this beard, May 29th 2009, our story starts many years and many beards before that. In fact, Karin and I weren’t even married yet. I don’t remember if it was a specific individual or a tradition for her whole family, but what I do remember Karin telling me was that someone in her family would grow a beard whenever his wife was pregnant. For some reason I thought that was just the coolest thing in the world and it was then, years before we were even married, that I filed that little tidbit away and decided I would do the same. Sporting a goatee for as long as I could grow facial hair I decided that a full beard was something I would save. Something I would grow, only as a family man.

Only as a dad.

Or at least as a dad-to-be.

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You can only break your own parents’ hearts so many times, and so after our second miscarriage and my second beard, Karin and I decided we were going to stop telling our families when we were pregnant.  The only indication would be the red scruff on my face and neck.  After two more pregnancies, which many of our extended families didn’t even know about, the act of shaving off my beard after each pregnancy got to be more and more emotional.  Lost in a fog of grief I can’t recall whether I shaved when we lost Ben before or after his funeral. Grief can do funny things to a person. It can cause emotional attachments to our most routine actions.

Like shaving.

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My father had a beard when I was growing up, and as far as I can remember, his father, my Grampa had a beard my whole life, until he got sick. In Karin and my struggle to start a family, and grasping towards any notions of fatherhood that I could find after losing Ben, I kept a partial and trimmed beard for about a year. Never long enough to become a problem at my job in food service, I would keep it short and shave most of my cheeks and neck in an attempt to keep the emotional turmoil of not being a father at bay. Shaving was the only thing that I could control.

A true surprise in so many ways, Liam didn’t give me much time for a pregnancy beard, so just when it was getting started it turned into a NICU beard. Abandoning the plan to shave once we had a baby, the plan became shaving only once we took home a baby. There’s a pretty big distinction between the two.

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Yes, an unhealthy emotional attachment to that hat also happened in the NICU. A Christmas gift made by my Nan, the day before Liam was born.

I kept things trimmed at first in the NICU. Until Liam’s due date. March 19th 2009. For many families with premature children the due date is the goal date for discharge from the NICU. On Liam’s due date (my Mom’s birthday, which is how I remember the date) we were still far from certain that Liam would ever come home. From that day on, if Liam is admitted to a hospital I will not shave, I will not trim, I will not even get a haircut.

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When you spend the first five months of your child’s life watching nurses take care of their every need you can begin to question your role as a parent. I did. No matter how many hours logged in a rocking chair next to the crib. The only thing it seemed I could do to show that I was being a father was to make damn sure that I looked like a father. Apparently, to me a real father looks like he’s been stranded on a desert island for a while. Hence, …

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The day before my last clean shave.

 

But again, that was a different beard. That was a beard born of fear. Born of worry. That beard was shaved completely off on May 29th 2009. For the first time in my life, it wasn’t just shaving, it was a celebration. May 29th 2009, the day after Liam was discharged from his 153 day stay in the NICU. Karin and I had taken our baby home, and I was finally free to shave it all away. The scratchiness, the mess while eating, the references to Grizzly Adams. It could all go away now. I have one picture of me holding Liam clean-shaven. You won’t ever see it. I don’t like it.I didn’t like it as soon as I had put down the razor. The journey to begin a family had changed me. Showing my baby face doesn’t suit me anymore.

May 29th 2009, the last day that I have ever been clean-shaven. 12 days later Liam would be admitted to the Hasbro Childrens Hospital PICU for a 109 day stay.

A new beard was born. A beard built for all that could be thrown its way. A beard built for the father of a child during his tracheostomy and bowel resection.  For 109 day hospital stays, more than a few 40+ day hospital stays, and for too many ‘less than 10 day’ hospital stays to even count. A beard built for seizures. To tickle Liam’s forehead and cheeks so that he knows that everything will be alright. A beard built so that Liam will never have any doubt when Daddy is here.

Dancing the Bowell Blockage Boogie

It has seen its fair share of shapes and sizes now but the beard has endured. My own (until now) private show of my dedication to being a father, and at this point I’m unsure if I’ll ever be able to get rid of it, as ridiculous as that may sound. I got my haircut about a week ago. The woman cutting it remarked about how drastic I had decided to cut the hair on my head and asked if my son would recognize me if I went that short. “Nah, he probably won’t even notice. But if I were to shave my beard off I’m not even sure he’d recognize me.” I told her. Were I to approach him without speaking, that might even be true. I don’t think I ever want to find out. Liam’s dad was meant to have a beard.

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Daddy’s Home!

I’ll be the first to admit that the beard has gotten pretty long these days and I really don’t know why that is. I’ll probably trim it down a bit soon, but not nearly as short as some people would like.  I work in food service remember and I’m sure that if she had her druthers my boss would prefer a clean-shaven kitchen manager. After a lifetime in the industry I completely understand that and don’t blame her. What she didn’t count on though, was my willingness to look a bit foolish while at work in order to look a bit more (in my mind) like a father when I’m not. It’s too bad for her I finally found a distributor for these. . . .

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And that’s the story of my beard. It’s very possible that my attachment to it is irrational. Unhealthy even. I don’t care.

I’m a dad now. And Dad’s have beards.

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Dream Night 2014

 

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Photo by Karin

The magic started when we met Hooligan, before we even entered the zoo. Hooligan, a Providence police horse, who was kind, patient, and gentle enough to meet Liam on our way into Dream Night at the Roger Williams Park Zoo this year. That’s the way things are at Dream Night, from the zoo staff walking around with snakes and lizards, to the docents volunteering in costume, the Hasbro Children’s Hospital employees checking families in, the face painters, jugglers, musicians and temporary tattoo artists, even the police officer on horseback at the zoo’s entrance, it is everyone’s mission to ensure that these kids with special needs, their families and even their carers have an even more special night.

 

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Photo by Karin

No exaggeration, Dream Night is our favorite event of the entire year, and after being rained out last year we have been looking forward to tonight for a long, long time.

 

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Dream Night  began at Rotterdam Zoo in 1996 and is now celebrated in over 170 zoos worldwide on the first Friday in June. In fact Roger Williams Park Zoo was one of the first zoos in the country to have a Dream Night, and it shows. Their dedication to this event rings true in the exceptional attention to helping each and every family have as much fun as they can possibly provide. 20140606-213334-77614438.jpg

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Trachs and vents, wheelchairs and walkers, extra chromosomes or chromosomes missing a piece, from CP to Spina Bifida and any other neurological disorder, none of us feel out-of-place or different at Dream Night. The only night of the year that we can say that. At Dream Night more than any other night, we all feel a little more normal. Absent are the stares and frightened looks we’ve all grown so accustomed to. Instead there’s an understanding of our struggles, and a night to forget them. An opportunity to relax in a public space knowing that every other family there in some small way knows exactly why this night is so special.

 

So freeing.

 

So much  fun.

 

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This year we even toured the veterinary hospital in the zoo. Not lost on us was the fact that so many of our families there tonight have more than a passing knowledge of hospitals so being allowed to walk around their hospital may have been my favorite part. Ultrasounds, x-rays, and endoscopy machines exactly as we have seen them used on our own children right down to the end tidal CO2 monitor. It was surprisingly fun to see just how similar the hospital facilities at a zoo are to the hospital Liam has spent so much of his life in, which I think is exactly why they open up the veterinary hospital for this event.

 

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There were snakes named Chuck (pictured above) and Elvis, a miniature donkey named Willy, and a Gecko whose name escapes me. The giraffes and elephants were happy to enjoy their nighttime feeding in front of a crowd even though they normally eat in peace after the zoo is closed. There were no lines to wait in and not once did it feel as if Liam’s wheelchair was in anyone’s way. Even if it was. No one would have said so. We exchanged hello and knowing looks with families we’ve never met but who probably understand our life better than many of our own friends.

That is the magic of Dream Night.

 

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Photo by Karin — It’s the simple attractions like these types of photo setups that we never really get a chance to get near on a normal zoo day. It takes time and effort to get a wheelchair setup back there. One of the thousands of reasons why Dream Night means so much to us.

Only 364 more days until we can relive that magic again.

 

Thank you, thank you, thank you to the wonderful people who made this night possible. The CNDC at Rhode Island Hospital, Hasbro Children’s Hospital, and all of the Roger Williams Park Zoo staff and docents. Your effort and enthusiasm are noticed and appreciated and while the Olson family will probably see you again over the summer, we already can’t wait for this time next year.

 

Editor’s Note: I was much more wordy in 2012 for Dream Night and I brought my real camera instead of just using my phone. This year I decided to not worry about pictures so much and just worry about having a great time with my boy and boy did I.