I’ve got frustrations with school posts left to post, and I’ve yet to recap our trip to the zoo to meet Anton, and over the next few days Liam will be transitioning from his trusty LTV-900 ventilator to a newer, lighter, quieter and more computer driven TRILOGY vent ( you may be surprised to learn that the quieter part of that is what is giving me anxiety as we have been living our lives to the rhythm of Liam’s breath for five years, I’m afraid of not hearing that, especially at night). In other words, I’ve got so much more to post but if you’ll endulge me, this one will be one last post about my trip to Philadelphia last week to speak at the Bayada Pediatrics 2014 directors forum.
This morning, they were kind enough to send a video of my speech that one of the forum participants took on his cell phone (Thanks Will!). After mentioning any of my past presentations here or on Twitter, many of you are kind enough to say that you wish you could have been there to see it, nd since this is exactly the type of thing I’ve been lucky enough to be asked to do that never would have happened without this blog I made sure to ask permission to post it here when I heard that someone had filmed it.
A few notes..
1. I doubt that I’ll ever post in such detail about any of my future speeches, but this one is different. My past events have been at the hospital where I work, and while they have all been well recieved, I was asked to do each of them by people who knew me before Liam was even born. This event was born solely from someone seeing me speak and wanting me to be a part of their own program. No one has ever flown my anywhere before. This was the event where I decided to stop waiting for people to call me a writer, a speaker, or an advocate but to start introducing myself as one. A big distinction, and I’m not looking back.
2. Sadly, the screens I was presenting in front of were just too big and awesome. Karin often jokes with me when I get stressed about writing these things that I could read probably the phone book while standing in front of huge pictures of Liam and the audience wouldn’t care since he’s so adorable, and she’s right. It’s a format I’ve used in all of my presentations. This 20 minute presentation includes almost 50 slides. My slides are not your typical powerpoint bullet points but are stand alone pictures of Liam projected as large as possible to help tell his story. Due to the size of the room and screens, the video catches a few of these images but is mostly just me talking. Hardly the exciting part of seeing me present.
3. I thought about trying to edit this video to a split screen to add the images alongside, or to lay the audio over the slideshow but ultimately I decided against it. First of all, the job is done. I spent my time writing, and travelling and giving the thing. To spend more time working on it now would take me away from the next thing. Second of all, if you want to see the whole show, you’ll just have to have your local children’s hospital or nursing company, or other group, ask me to come speak. While sharing, writing, speaking and advocating are all things I have done /would do/ and will do for free in some cases, I’m learning that what I can provide by way of our story does have value and if more of the support of my family comes from consulting and speaking than it does from being a foodservice manager I would be a fool not to pursue those avenues.
4. I really would like to take this time to thank Bayada Pediatrics (the pediatric arm of Bayada Home Health Care) for asking me to present to your first ever Directors Forum for office directors from all over the country. They thought of everything by way of accommodations and logistics so that the only part of the whole trip that I was responsible for was the content of my speech. Everyone that I met was supportive and helpful, and seemed genuinely excited for me to be there speaking to them. Everyone was so nice in fact, that the night before I worried that maybe having the middle ten minutes of my speech being a list of my complaints about home nursing, might be too negative for this crowd. Thankfully, it was exactly what the program organizers were hoping for, as they had explained at breakfast before the meeting, setting my mind at ease.
I was surprised to learn that many of the office directors have not previously been home nurses, (not sure why I assumed that though, I manage a team of supervisors responsible for nutrition and special diets but am by no means, a dietitian or nutritionist.) These are the directors and managers from the office, and although I had to leave for the airport quickly after presenting, the participants I did talk with seemed to appreciate our story.
All in all I was impressed with the excitement and positivity I saw from the company charged with keeping my kid safe.
( It won’t get them off the hook the next time I have to call the office in anger though. )
4.It’s about twenty minutes long, but if you’ve got that to spare and you feel like listening to me complain about home nursing but then sing the praises of three nurses, here you go…
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.
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.
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.
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 could (and will) tell you awesome stories about Liam about to start trialing time unattached from his ventilator, or how amazing his progress as we cruised towards the end of his school year. I could (and will) post the essays I’ve started on my problems with the IEP process or my frustrations with what is commonly called the “dadblogging community”. I could (and will) regale you with the tale of finding a hidden gem of a local hiking path that is wheelchair accessible.
Although I could also (but won’t) tell you awful stories of two months of my erratic and inconvenient work schedule wreaking havoc on the time I’ve had to spend with my wife and son. I could (but won’t) post an essay about the grind of 24/7 care especially when the once a week night nurse relief unfortunately had to miss her shift due to a family emergency, leaving a 14 day stretch of less than 4 hours of sleep a night for both Karin and I. I could (and still might) regale you with the tale of the 14 hour hiccup attack and the car inconveniences and all the other things that come up and take away our ability to get the rest we need. The rest I apparently need to have the energy to blog at the end of the night (early morning) while I’m up watching Liam.
I really need to just start blogging in the morning.
In the meantime I’ll just post a picture and a wave hello. Tomorrow my work schedule goes back to normal. Tomorrow our usual daytime nurse (who has been caring for Liam for the past four years) comes back after 6 weeks on a medical leave. On Friday I’ll start a ten day vacation from the day job.
I’ll be around soon. For now here’s a picture, and a wave hello.
We’re still here. Thanks for coming back.
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.
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.
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.
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.
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.
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.
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.
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.
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, …
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.
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.
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. . . .
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.
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.
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.
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.
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 much fun.
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.
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.
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.
Understanding that families do come in all shapes and sizes, who among us don’t remember hearing some version of it?
“You go to your room and you just wait until your father gets home and hears about this!”
Being told when Liam was only three weeks old that he’d never reach the developmental level of even a toddler, I never thought we’d have to use that phrase in this house. I knew then that he’d prove them wrong and boy has he, but discipline is one of those “universal” parenting skills that held little importance for us.
“There are no spoiled kids in intensive care units” people in the NICU and then the PICU say, and for us, once we brought Liam home, it became “there are no spoiled kids on ventilators.” And it worked, for a time. As long as he was breathing, Liam would not hear the word “No” or “now” or the phrase “because I said so” until he was almost four years old.
So it’s our own fault really. Don’t let that cute smile fool you. Liam can be just as much the brat that any other five-year old can be.
Truth be told, I couldn’t have been prouder to hear that Liam had been pulled from his classroom and into the hallway by his teacher to discuss why he was misbehaving in class. The kid who would never be able to communicate. He almost got a Yellow Card (and we all know you don’t want something like THAT on your pre-kindergarten permanent record). But of course it wasn’t in the fact that he was ignoring his teacher and not participating in his schoolwork but in the how he did just that.
Among Liam’s many super powers is his ability to avoid obligations (dr.’s appointments, physical therapy, occupational therapy, speech therapy, family functions) by sleeping or pretending to be asleep. He hasn’t realized yet that his heart rate monitor betrays his brilliant performances every time. He does it because it works. This time though, Liam decided to push boundaries by actively, alertly, and fully aware of his surroundings and behaviors, refused to make eye contact with his teacher and moving his head around in an effort to NOT look at the activity she was presenting to him. Non-compliant and proud of it, in every way that a non-verbal, low-muscle-toned five-year old brat can be.
Let me be clear, Liam loves his teacher. He perks up when she is around and the work that she has been able to do with him has been absolutely staggering. It’s in that love and respect that I think lead Liam to push those boundaries as far as he could. It’s because of her love and respect for him that I think she pulled him out of class to discipline him. Ventilator or no. seizure disorder or no. Global developmental delay or no. Liam is held to the same standards of effort and participation as all of her students and if she were to let him slide because he was cute. Or because he has special needs she is doing him no favors.
The concept of obligation is a tough one to teach. But it’s a lesson every one of us needs to learn, so when I got the full report from Liam’s mom on my return from work at the end of the day, Liam and I had a nice long talk. A talk about respecting the teachers and the adults in his life. About work, about effort and participation. We talked about what he did wrong, and what he needed to start doing from now on. I didn’t have to work to hard to figure out what to say either. Most of my own “wait until your father comes home” moments came on report card day, where I would get a lecture about work, about effort, and about participation.
The next day I was home from work and was able to go with Karin to pick him up from school. His teacher came directly over to us as he and his classmates exited the building. ” Well thank you for whatever you said to him last night. He had an EXCELLENT day today! He worked so hard with me when I asked him to.” she told us.
I guess he learned his lesson. Must have been that whole afternoon spent with the guilt and the anticipation of a punishment of some kind.
Just waiting for his dad to come home.
Karin is asleep in our bed.
Liam is asleep in his bed. The gaseous results of his recent formula change rumbling over the baby monitor to the living room and wafting their way across the whole first floor.
I’m on the couch. Listening to Liam’s breathing (and farting) pattern over the monitor and laughing to tears at old Cheers episodes.
1:30am on a Wednesday. It looks a lot like any other night at 1:30am at my house.
Smells the same too.
He’s lucky he’s so damn cute.
At the end of June the Women & Infants Hospital Community Partners Workshop will be holding a conference called Dads and their Families: The Struggles, Triumphs & Supports of NICU Dads. I know this because I have been asked to be the event’s keynote speaker. It’s my first paid speaking engagement so if you were hoping to grab me to speak to your group or organization you missed your chance at getting all this for free. Now it’s going to cost you.
Later in the program I have also been asked to sit on a panel alongside area experts and staff from the state DCYF, and non-profit agencies. The panel is focusing on resources for dad’s. Oddly enough the event’s organizers don’t want me there to speak as Liam’s dad. They’ve made it clear, for the panel they want Eric Olson, writer for PressureSupport.com. I’ve officially done it. I’ve fooled you all into thinking that I actually know what I’m doing. Ha Ha!
When faced with the decision to have Liam trached, Karin and I were understandably terrified, but we knew the science. We knew all the medical reasons, and the surgical reasons. Pulmonogists and respiratory therapists alike had already commented on our understanding of the issues that Liam faced to get home. We knew it was the right thing to do. In a hospital. In an intensive care unit. What we didn’t know was how that actually worked on the outside. How do you put that into practice? What does living at home with medical equipment look like? Should we get rid of our cats? What if the wiring in my house couldn’t handle the power needed for a vent and humidifier, and feeding pump and suction rig? How do we keep the house clean enough for this? Would we have to get one of those tents like they did in the movie E.T.?
The universe, in its abundance, sent us a sign. They sent us a family with an eight year old boy who had been trached and vented all of his life. Across the PICU pod and in the hospital for a routine bronchoscopy (all kids with trachs do it 2x a year, Liam just had his most recent bronch last tuesday). In the way that nurses do in a hospital, without breaking any privacy policies, introductions were made and we were able to chat with parents who had been there. Parents who didn’t have a bubble built around their house. Parents who were wearing jeans and t-shirts — not lab-coats or nursing scrubs. Parents who looked tired but not haggard. Stressed maybe but not strung-out. An ordinary family living an ordinary life.
That first conversation wasn’t even very long. Only a few questions and it wasn’t the actual responses that struck me but the almost calm nonchalance of it all. The impression given that there really wasn’t even anything worth talking about. “I don’t know what to tell you man.” I remember the dad telling me “There’s really not much to it other than changing the plastic parts, and when it alarms you do what it says, by the time you get home, you’ll know what to do. If he needs suction, you suction and you hardly even remember that it’s there. It’s what we needed to do to get him home and out of here.” I’m pretty sure after that answer we just started talking about the Red Sox. A few hours after that conversation, after days and days of discussion, we let the attending doctor know that we were ready to proceed. Liam’s tracheostomy would come a few days later.
A month and a half after that, this blog would be born.
Not every family gets another family across the pod in the PICU. Not every family gets someone to talk to. It is my hope that this blog can be that family for someone else, and thanks to all of the emails and comments from many of you I know that it has been, but I’ve gotten away from that mission for this space. Lost in the twice monthly 1500 word essays are all of the boring, everyday moments that make life with Liam, just that. This life, with Liam. It can be exciting, it can be sad, it can be as happy and as frustrating as any other life. When trying to imagine this life I needed to know that this was possible, hopefully, in sharing all it here I can show someone else who needs to know that it can be done.
So get ready. I’m going to work on showing you more of the boring stuff. The nitty-gritty.
Karin has been telling me that what I’m missing are the little pieces inbetween the 2000 word meaningful essay and the 140 character tweet lie the sweet spot of really getting to the little things. Postlets she calls them, and I think she’s right. So it’s time to start stealing that idea. (why not, I steal most of her photos for the blog anyway. like the one below.)
Postlet the first: Yes, if you read my twitter feed you would have seen that Liam was in the hospital this week. Liam is fine. He had his routine bronchoscopy. The ENT surgeon likes what she saw, things went well and all the overnight blood tests during his vent assesment were perfect. Today marks a full month since Liam has had even a whiff of supplemental oxygen. The longest span without bottled oxygen in his life. Confirming that with blood gases while he was int eh hospital was wonderful.
I’ll talk to you soon.