special needs

Still here.

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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.

Events

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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.

 

Just wait until your father gets home.

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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.

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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.

 

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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.

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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.

At my house right now.

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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.

Getting back to why I’m here.

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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!

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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.

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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.)

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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.

 

Boom!

Postlet.

I’ll talk to you soon.

 

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Why I probably won’t be mad if Liam grows up and tries marijuana

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Like I do every weekend morning I found Karin and Liam asleep in Liam’s bed last Saturday morning when I woke up. Unfortunately it had only been a short while after they had finally drifted off.

“We didn’t have a very good night.”  Karin said when she woke up. Liam had been pretty restless for me the night before too. He spent the night looking like he was just about to sleep but something was keeping him from getting there. I thought he had finally gone out at 4am when Karin and I traded posts. I guess I was wrong.

“I had to spray him.” She said. It wasn’t the way I wanted our weekend to start.

The Spray. The versed (or Midazolam) sprayed into the nose to break the really strong seizures. It’s our antitode to the storms that Liam can’t break on his own. We also have Diastat if the versed doesn’t work.  It’s rare to see Liam cry because of or during a seizure. He has however cried every time the nasal versed nozzle is placed up his nose and the first mist given.  Whether the long-term side effects of his daily seizure prevention meds, or the short-term emergency meds we use to stop them when they can’t be controlled, it isn’t the seizure that he seems to feel the pain of, it’s the cure.

We’re in a good place with his seizures now. The reason that hearing he had gotten sprayed on Saturday hurt so much was because he hadn’t needed it in weeks. Before that it had been months. There have been times in Liam’s life where we have had to do that three and four times a day. When the seizure minutes in a day outnumbered the seizure-free. The hard part is knowing that those times may (and probably will) return.

Even when you find a regimen that works, weight gain makes renders it fleeting, or the side effects of long-term use set in, or tolerance builds and effectiveness wanes. New meds are tried, new risks are weighed. Seizures change. They evolve. They break through. New meds are tried, new risks are weighed.

It’s easy to fall into the trap of thinking that we’ve got this thing all figured out. That we’re the grizzled old veterans of this special needs game. The wibbly wobbly timey wimey aspect to months and months spent in the hospital making them seem like dog years of parenting, every month feeling like seven. We’re only rookies to the sport though. Liam hasn’t even started kindergarten. Which is why I truly value the friendships we have made both in real life, and online from all over the country, with families who have children in their early teens all the way to early twenties with special needs, to show us the way through the big leagues, to be Crash Davis’s to our Nuke Laloosh.

I’ve mentioned her here before so I expect that every single one of you listened to me and have been reading my friend Elizabeth’s blog here. Reading her blog in all its honesty makes any reader feel like you’re already her close personal friend, and of all the many friends around the world that this blog has given me, Elizabeth is the only one who I have ever spoken to on the phone. I don’t email or comment on her blog nearly enough but she’s always there with a kind word or a witty joke on mine, (along with just the right amount of profanity when the comment needs it). She’s good people.

Elizabeth’s daughter Sophie has recently had a stretch of two weeks without a seizure.  It was the first time that has happened in 19 years. After a lifetime of many different (at least 17 if I recall reading) powerful drugs with serious side effects, Elizabeth and Sophie have found something that has helped bring her two seizure free weeks for the first time in 19 years. I know I said it already. It bears repeating.

I don’t know what 19 years of this feels like. I know what 5 years of this feels like. I know what two weeks feels like. I know what ten minutes feels like. The ten minutes between looking at the clock when it starts and  deciding to push down on the nozzle for The Spray. I can’t even imagine what 19 years of this feels like. I don’t want to.

But maybe I won’t have to know what 19 years of this feels like. Maybe, thanks to people and families like Elizabeth’s sharing their own stories on blogs, radio and TV interviews, and newspaper articles like this one featuring Sophie, our nineteen years will have greater access to a better way to keep seizures away. A simpler way. A safer way than the harmful drugs I continue to give to Liam every day. It’s not science that is holding back the research, testing, and access necessary to give Liam more relief from his seizures in this lifetime. It’s politics. It’s not because it doesn’t work that we haven’t heard real statistics and started spreading it to every child or adult that it could help, it’s because insurance and pharmaceutical companies haven’t yet figured out how to monetize it.

Luckily Liam, Karin and I happen to live in a state where medical marijuana is legal. Luckily, we have a relationship with Liam’s amazing neurologist in which I won’t feel uncomfortable bringing up our interest in this (seriously, we have assembled a pretty kick-ass team of specialists around Liam but his neurologist is like the all-star, and we’re not at a point yet where we would jump into this without his blessing and help). Luckily we have friends like Elizabeth who show us the uncertain road ahead by taking the time and effort to turn back for us and let us know how they got there.

I fear running out of options. I understand that Liam will always live with seizures. When the devastating side effects get to be too big a risk, or his tolerance  grows too strong for all the drugs that used to work. What then?

Well you see, luckily,there’s this plant… Listen, I’m not saying we’re going to run out tomorrow to try to score Liam a big bag of grass and see what happens, what I am saying is that it’s another option and knowing what I know now, Liam won’t have to wait 19 years to try it.

 

Tired.

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

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

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

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

But I’m tired.

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

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

I’m tired.

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Feel the breeze.

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If you follow me on twitter or Instagram then you’ve already seen this picture but I just wanted to put this one here for safe keeping.

Liam likes to close his eyes if he feels a breeze. He was wide awake for this one waiting to get inside before school started.

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