Being sure.

I think about the conversation nearly every day.

The seemingly scatterbrained geneticist with her big huge textbook on chromosomal trans locations. 20 hours earlier we heard the word lissencephaly for the first time. Only minutes earlier we heard the term Miller Dieker Syndrome for the first time. Karin and I sat nervously on the NICU “family room” couch. A two week old Liam lay in his isolette 30 feet away.

“I have some here if you’re sure you want to see them ” she grasped the textbook and slid her fingers to the page marked by the post it note sticking out.

“See them?” I asked. We were talking about chromosomes. We were talking about my son. About “abnormalities. About life expectancies. I didn’t need to see charts or molecule diagrams at that moment.

“Well, pictures of other kids who have the same diagnosis. So you know what your son may look like due to the syndrome. If you think your OK with seeing them I can show you some pictures of children up to a few years old. ” she said it just like that. Clutching her book and waiting for us to decide, as if what were about to see would have us heading for the hills.

I don’t have any idea how hard it must be to be a geneticist who’s job involves telling brand new parents the kinds of things that are “wrong” with their kids. Things that, though could not have been prevented, bring tremendous guilt since it came from within themselves. How difficult it must be to choose your words. To decide how to frame the conversation without setting expectations too high or low. I don’t envy her position in this.

Karin and I looked at each other for a second both nodding that we were ready for whatever we were about to see. We grabbed each other’s hands and told her we would like to see the pages.

The geneticist opened the book first to herself and then turned it around toward us. We looked on in silence. Looked back at each other and back toward the book and its pages again.

” I’ll leave you two alone for a few minutes to look at the pictures and I’ll be back to answer any questions you may have.” She excused herself without a word from either Karin and I who had now flipped through the four page textbook entry that included about a dozen photos.

“Uh,…” Karin seemed to be choosing her words carefully. “Um, what am I missing?”

I knew exactly what she meant.

“These are the cutest kids I’ve ever seen! Why did she make us decide if we were sure we wanted to see this. What am I supposed to be seeing here?” She said with relief in her voice.

“Well it says here, pronounced forehead, shortened nose, widely set eyes. I don’t know, they look like kids to me.” I said.

I remember laughing. Us both laughing. After twenty hours of mostly tears we had no idea what our future would hold. We had no idea what a life with a Miller Dieker kid would be like. We had no idea if Liam would even make it home from the hospital.

But we still knew what was funny.

And when a scatterbrained geneticist worries you into thinking your child’s head is going to end up growing inside-out but then shows you pictures of a bunch of adorable two year olds, well …that’s funny.

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I think about that conversation nearly every day.

Whenever I see a picture of Liam and marvel at how incredibly adorable he is.

Whenever I look at him and marvel at how handsome he is.

Whenever I’m amazed at how I could have possibly had any part in making something that looks so …

Perfect.

And now I ask you, are you really sure you want to see them?

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Not just a pretty face

Like most parents of 5-year-old children we get a lot of arts and crafts projects sent home in Liam’s backpack. Most of them obviously the result of “hand over hand” writing and crafting. That’s ok with us. We came to grips early in Liam’s life that he wasn’t going to be making us any crafts or writing us any letters.

We picked Liam up from school about fifteen minutes early on friday so that we could take him to a doctor’s appointment. Liam’s nurse barely had him out of the doorway when he started he shouting at me. “He did such great work today! He worked so hard! Wait until I show you what he did in class today!” Liam’s nurse is not the most excitable gentleman you’re likely to meet and so the enthusiasm was evidence in and of itself of the importance of what we are about to see.

I can’t tell you how much class work we end up finding ourselves when going through Liam’s backpack long after his nurse has gone home from the day. Not only did he want to show us this work, he started showing Karin and I this page in the van, before we even had the tie-downs on his wheelchair secure.

“It started with this worksheet.” He told Karin and I while we secured Liam’s wheelchair. “He was doing some hand over hand on numbers until he did this number one all by himself!”

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“That’s when [Liam's teacher] got really excited and ran to get some more paper. She wanted to see how far she could push him and the only support she gave was to keep her hand at his elbow so his arm would stay on the table and not fall off.” He was speaking faster than usual now “The marker stayed in his hand on his own and he moved his wrist and hand on his own.”  That’s when he pulled it out of the bag to show us.

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From left to right. 1…2…3…4…5.

You might not see it. and you know what, I’ll admit that the 4 might be a bit of a stretch but it looks pretty damn good to me.

It’s things like this that Karin and I wish we could show to every doctor and resident who saw fit to tell us everything that Liam wouldn’t do. Everything that he’d never accomplish. Everything that’d be impossible for him to learn.

Because as a close friend who also is a parent of a child with some special needs often tells us — Everything is possible — the impossible just takes longer.

*****

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Liam and his best buddy W, the nurse I mention above. The photos are selfies that W has taken and shared with us. It would be a HIPAA violation for him to share them in any other way. But not if I do.

Liam’s Mom Won’t Take Any Sick Days.

Were it Liam who needed to rush to the emergency room at 4am Saturday morning we would have known exactly what to do.  The movements choreographed, decisions made in seconds. Even in the most stressful of times a calmness of knowing what to do takes over. Were it Liam.

When it is one of us though, things go a little wonky.

So when Karin came downstairs at 4am, which is our time to switch posts anyway, with a swollen puffy face it took more discussion than it should have before she left to get treated in the emergency room. We both knew she needed to go. Niether of us wanted to say it out loud. knowing what we know about E.R.’s we both knew what she was in for once she got there. Hours and hours of waiting in a waiting room, before hours and hours of waiting in an exam room. Admitting desk, nurse, resident, attending, repeat your symptoms and the timeline again. Karin’s run this drill before.

Only this time…do it alone.

It isn’t as if she didn’t think she needed to be treated or that she was too scared of all of that, no it was that if she left to be treated who would take care of us. Absent the fever Karin was showing signs of a major infection in her face but she was more concerned with how I would get any sleep before work once she left. Who would do Liam’s trach care in the morning? Who would be the mom, should the mom get admitted to the hospital?

Thank God it didn’t come to that. 8 hours after walking in the hospital, after a battery of tests and x-rays, an IV antibiotic and a handful of prescriptions later Karin came home with the answers. A pocket abscess. An infection growing at the base of an old root canal. Had she hesitated to go get it checked out who knows where the infection could have spread. Bloodstream, eye, brain or airway, we know a thing or two about infections in this house. We know about sepsis. We know what could have been.

This morning, five days after this whole ordeal began, and two days after she had met with a trauma dentist (a title I had never heard of before), Karin saw the oral surgeon and had the procedure to clear out the infection. The pain she has endured all week now threefold. Swelling, which had receded with the antibiotics, now back with a vengence thanks to the cutting through gums and drilling through bone.

Given the same I would be curled up in a ball. She did laundry.

Try as I might to get her to stay in bed all night to rest she insisted on taking her “shift” so that I could sleep before work.

She is incredible.

Unbelievable.

And amazing.

I’m sure she thinks I can take care of Liam by myself if I had to — but she’ll be damned if she’s ever gonna let me prove it.

I didn’t do it by myself though. I called in some favors. Liam’s nurse enjoying a day off with his family responded to my text immediately and was willing to come and be with Liam so that I could go to get karin at the hospital if I needed to (she drove herself home because she didn’t want to bother anyone). My mom came to sit with Liam so Karin could get some sleep and I could go to work. Karin’s mom came up to take her to the oral surgeon so that I could go to work today as well.

I didn’t do it by myself.

How much do you want to bet that if it were me in the E.R. that Karin would have though?

Well that’s a suckers bet. You don’t ever want to bet against my wife.

******

In the time since I’ve posted last we’ve had a super-hero themed birthday party for a five year old. I’ve been approached to give a presentation to a hospital bio-ethics committee and to be the keynote speaker at a conference on former NICU families this summer. We’ve even painted our living room which is significant only in the fact that it’s the most “moved in” to this house we have gotten since we bought it while Liam was in the NICU. Every one of those things could have made a great blog post but have gone unmarked. Longtime readers will know — tales of hospitals, E.R.’s, and illnesses?
Well that’s just what I do best around here.

How Liam taught me to love The Bruins.

Maybe it’s the nonstop action. Back and forth so quickly and smoothly. Given Liam’s compromised vision though, I think it’s the contrast. Dark sweaters against a field of white. Hockey is the only sport Liam seems to enjoy watching. In person or on television it’s hockey that is the only sport that can come close to holding Liam’s attention for any length of time.

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Even after my uncle took me to see the team he coached when I was very young I didn’t really catch the hockey bug. When I was in the fifth grade a new neighbor moved in with a kid a year younger than me who loved hockey. We played street hockey in front of our houses over the next few years. I was aware of Ray Bourque, and Cam Neely and Andy Moog but even then I never really watched hockey on TV and once that neighbor’s kid moved away to live with his mother the hockey part of my life came to an end.

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A short burst of action followed by celebration and preparation to do it all over again, baseball and football are far to complex for Liam to understand. The variety of camera shots from field to sideline to close-up it’s all just too much to keep connected. Hockey is broadcast differently and the white background of the ice makes it that much more interesting for Liam’s ability to understand and find enjoyment from. You can see his eyes follow the action, something that he normally doesn’t do with any screen larger than his ipad. When Karin and I cheer a goal Liam will start waving his arms. A definite sign that he’s having fun. Watching the Bruins has quickly become our favorite family activity.

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To know me is to know of my lifelong passion for baseball and the Red Sox. Baseball has always been my game and although I’d definitely call myself a Patriots fan, football has always been a part-time thing for me. One afternoon a week and just a small distraction to get me through winter. Last year that all changed. Last year, Karin on a whim, she’s never told me if she ever had a reason, turned on the Boston Bruins hockey game before I got home from work one night. I came home a few minutes before the puck dropped and it was instantly apparent that Liam was interested in what was going on up there on the television screen. A rare occasion as I’ve already told you.

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The first period I just had to try to remember some of the rules and I will admit that I had to look up online this new hybrid icing call that I didn’t remember (apparently it didn’t exist when I was a kid) but I managed to get back up to speed fairly quickly. I had no idea of the strategy or plays that I was seeing but I knew what the penalties were at least. In the second period the Bruins scored. Not understanding what led up to it, the goal seemed to come from out of nowhere. Of course now I know the value of looking for triangles and getting pucks in deep and throwing pucks and bodies toward the goal to give yourself great rebound chances but at the time it looked more like a bit of luck than anything.

I literally jumped out of my seat and screamed while throwing my hands in the air. Anyone who has watched a Red Sox playoff game with can tell you how loud that I can be. With baseball, a game I played, a game I understand even the smallest nuances of, shouts come from anger, shouts come from frustration, shouts come from happiness and excitement. I have no idea where the shout of joy that Bruins goal gave me came from. Turning towards Liam and already apologizing to him I expected to see him fearful or recoiling from my sudden outburst. Instead I saw a smile and him flapping his arms like wings. A Liam sign of excitement. He could tell that mom and dad were happy.

It was in that moment that I became hooked.

We didn’t miss a single game for the rest of the season last year (about three more weeks of regular season play). Didn’t miss any of the playoffs either. Not a single game.

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In the 16 games that the patriots (a team I have been a fan of all my life) have played this season I think I missed 4 of them. In the 42 games that the Bruins (A team I’ve been a fan of for about a year) have played this season I have missed 4 periods of play or the equivalent of a game and a third. An overzealous convert for sure I know what we in sports fandom call this. Fairweather fan, or pink hat (a particularly misogynistic local one) and with the Bruins going all the way to the Stanley Cup Finals last year, I suppose that’s exactly what I am.

I really don’t care.

All I care about is how big the smile on Liam’s face grows when he sees his Mom and Dad jump out of our seats high-fiving and screaming our happiness every time A bruins player finds the back of the net.

In the past year I have become obsessed with the Boston Bruins.

It’s really just an offshoot of being a fan of Liam.

 

 

Story time

When I was a kid my family used to read to each other after dinner. My brother too young to participate in any of the three, each night my mom, my sister, and myself would rotate through washing the dishes, drying the dishes, or reading for a half hour from whatever book we were reading at the time. Madeline L’engle’s A Wrinkle in Time is etched in my brain this way. It was my favorite book growing up and a few years ago when I read it to Liam over the course of a few nights I distinctly remember sitting at our family dinner table and beaming with pride every time I hit a new word but didn’t need my mom’s help working out its pronunciation. The whole routine in no small part contributed to my lifelong love of books and stories.

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Among the mountain of gifts Liam received for both Christmas and his birthday sits this paperback boxed set of the Harry Potter series. None of us have ever read any of the Harry books, and we’ve only seen bits and pieces of some of the movies but I’ve got a pretty good handle on the story. Maybe I spent all these years avoiding the franchise, even after almost everyone I know kept telling me I should try it, so that I could share the experience with Liam.

While Santa left plenty of toys under the tree for Liam, this particular gift was from Karin and I. More than the physical object it is also a gift of time, a gift of an experience. An experience we will share together.

Anyway, on January 1st Karin and I will start reading the entire Harry Potter series to Liam. I’ll keep you posted on our progress.

Staying Ahead

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It’s hard work being five years old.

I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.

The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.

It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.

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And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.

Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.

I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.

A Month?!

A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).

We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.

The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.

It’s time to make a change.

What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.

Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.

I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.

We’ll see.

Five years

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Today is Liam’s 5th birthday.

Fifth.

I don’t have any words.

I have all the feels. I have a whole bunch of happy tears. I have more pride in my little fighter than I thought humanly possible.

My Big Boy.

My five year old son.

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How the hell did that happen?