Fighting Nemo – Blizzard of 2013 part III: Cancel that Rescue

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I called our local fire station directly the first time. Worried that we would be diverting an ambulance from a true minute to minute medical emergency I couldn’t pull the trigger on dialing 9-1-1. After all, Liam was still as warm as he needed to be and the weight of the added blankets seemed to have had a calming almost soothing effect and he still hadn’t woken up. The dawn, while surely not doing any actual warming, brought with it the confidence in a new day. Cold in complete darkness is different then a well-lit nip to the air, maybe things would work out anyway.

“My name is Eric Olson and my 4-year-old so is ventilator dependent and also wheelchair dependent. We have no power and no heat. We still have battery power and he is not in any distress. We are all fine at the moment but if this goes on much longer we will eventually need a to get my son to somewhere with heat, power, and also available oxygen. I’m not looking for you to come right this minute but I need some information.” I tried to be as efficient as I could with my words to give him as much information as he needed.

“Well I don’t have any information on when the power will be back.” He sounded a bit drained already, like he had been answering the same question over and over already.

“No, no!” I didn’t want to lose him. I did have questions he needed to answer. “I know about that, I need to know what will make it easier for you guys when we do need to get out of here.”

“Well you just call 9-1-1 when you need us and someone will come and get you as soon as we can. You said that your son isn’t in any distress at the moment sir?” His tone changed to one of someone who wanted me to be sure that if I needed them they would be there. Into that of a Fire Fighter.

“No, he’s fine but I don’t know how much longer we’ll be able to keep him warm and I think I have about 8 hours of battery (really I thought I had about 12 but he didn’t need to know that.) but those seem to holding less charge with the cold and I’m worried about his suction. We have time though.”

“Look I’m gonna be honest with you, right now even our trucks are getting stuck out there right now, but when you think it’s the right time to go then we’ll be there to get you out. Just call 9-1-1 and we’ll be there.” he said.

My next call was to the Emergency Room at Hasbro Children’s Hospital to ask if we were brought in by an ambulance was there an immediate intake and admission process or could we simply walk through the tunnel into the separate hospital I work in. For sure we could hunker down in my office for a while and get warm provided we could get there.

“Well we’ll probably just find some open space somewhere for you guys to plug-in and you would take care of him, if you work next door why don’t you just have the ambulance drop him off there?” the nurse asked.

“Because it’s an ambulance not a taxi.” I said, surprised that an ER nurse would think that the ambulance would bring us to the emergency room of a hospital that only treats women and newborns (of which Liam is neither). I ended the conversation a bit concerned that I didn’t fully explain our needs to her but we would figure it out. If we needed to get out of here for his safety it wouldn’t matter which hospital we ended up in. [Spoiler Alert: It ends up being both!]

Karin made contact with my parents who while awake now, were also snowed in. Hours away from being able to go anywhere since apparently not everyone spent the night shoveling every two hours. I suited up again to clear out the path for a stretcher. I had just gotten the ramp done and was a few feet from the driveway when I heard the rumble. I threw my hands in the air and waved to the big burly guy with his head out the window as his plow threw snow at my front fence and cleared a beautiful ice-covered asphalt path down the street. At least now an ambulance could get in.

Overjoyed by the appearance of the plow and naively thinking that it signified a round the clock effort that had kept things clear all over the city I dug in with gusto and cleared the whole driveway all the way out to the plowed path. I could get out now in the van if I wanted, I kept thinking. I just didn’t know how far I’d get. It’s not a risk I was willing to take with Liam in the back.

By the time I got back inside Karin had gotten our little weather radio to the local news AM feed and reports were grim. 190,000 without power just in RI. impassable roads everywhere. Travel bans enforced with tickets and fines for being caught on the roads, which I was exempt from since I am considered “essential personnel” for the hospital (patients have to eat!) just a general, batten down the hatches and don’t leave your house kind of vibe. I wished that was the vibe that would be possible for us.

And then a really strange thing happened. By now it was still only about 7:35am. With a cozy Liam STILL ASLEEP?!! Karin and I laid down under to the covers on the floor mattress to discuss the next move. To listen to the coverage and to tell each other that we would be ok. But instead we both fell asleep.

It was 9:15 when we woke up. Pissed that I had fallen asleep at all I was glad that it was only for a short while.  My first thoughts were of what we would do now that Liam would undoubtedly need a new diaper now. I was still so worried about how cold removing all the blankets would make him. It was time to make a move.

I did the only thing I felt I could do to feel like I was protecting and helping my family. I grabbed my shovel and hit the driveway again. There was some snow back on the road but not enough to keep us home.

My father called to say that he could hardly walk up his street and the cross street to his hadn’t been touched either. I’m not sure what either of us could have done to help the other, but even though we live only a few blocks from each other, it was moot. There was no getting around town yet. I better make the call.

Karin greeted me at the door holding my phone when I came inside and said “It’s time”. She was right of course. But foolishly thinking that a rescue would arrive in only minutes I made us pack all of our emergency gear for the trip first, which consisted of Karin double checking all the emergency packing she had already done the day before, and me pacing around, getting in her way, and shouting about how  our portable oxygen tank leaks at like a 1/4 liter an hour.

I made the call.

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2 of the 3 fire fighters who arrived about 6 minutes later have been here before for at least one of our calls for an ambulance. One of them even commented on our new pass through window from the kitchen to the living room. I explained the situation to them on our walk from the truck into the house but once the lead guy with the radio saw Liam all bundled up he called into his radio “Yeah we are going to need that rescue here now, go ahead and send that rescue through.”

Until I started asking some questions.

Could they bring his chair with him? No. Wouldn’t be very helpful to get him there only to be separated from his only way of getting around.

Could we both ride in the ambulance with him? No. looks like I would be driving behind them in the van with his chair anyway. No way I was going to be separated from them now.

I didn’t even bother to ask him whether or not they would drop us off at my hospital to avoid being admitted at the Children’s Hospital. I was already seeing what our new best option was.

“It’s going to take a little while for them to get here since we had to call in a rescue from another town but it will get here before you run out of battery power.” The lead guy said.

“Let me ask you guys this. If I can get my van down to Pawtucket Ave, (the main road through town to the highway, only a few blocks from our house) will I be able to drive that van to the hospitals?”

They all looked at what seemed to be the oldest fire fighter. He thought for a second but then said “yeah, I just came from there, you should be able to make it.” The lead guy with the radio nodded.

“Cancel that Rescue.” I told him and looked toward Karin. “let’s go. It’s the only way to get him, us, his chair, and everything else we’re going to need. We have to go for it.” I said, unsure of her reaction. Silly me. She nodded enthusiastically without hesitation.

“Let’s do this.” She said.

“Are you sure?” Radio guy brought up his radio waiting for our say so.

“Cancel it. If we can pass the roads we’ll get there. save that rescue for a real medical emergency.” Karin told him sternly.

Radio guy made his call while the other two offered to help carry stuff out to the van. We thanked them kindly but assured them that we have a system to loading up and they would only be in the way.

And then next is when it all got real. We made it through the night but now the real discomfort would start. At least at home there’s some comfort in the cold. Not a lot of comfort to be found at a hospital. Not in furniture, the ambiance or the food, and it was the food that made me realize what we were about to do, when Karin picked up the pan of Brownies.

Our “snowed-in” brownies with the chocolate chips in them and everything. She picked up the pan, looked up to the three men in her tiny kitchen and said “Looks like we’ll be in the hospital for a while guys. Want to take these back to the station?”

“Sure we do!” The youngest and quietest of the three stepped up and took the pan as they all thanked us and made their way back to the truck.

I hope they enjoyed those damn brownies. I know I would have.

******

Editors Note: 1.) I want to make sure that I mention that throughout these pieces all of the photos are by Karin. I was in no shape to think of taking pictures through this all, I’m glad that she was. 

 

 

Fighting Nemo: The Blizzard of 2013 — Part II Just Keep Shoveling, Just Keep Shoveling

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Friday 2/08/13 4:30pm Home from work now. only a couple inches on the ground so far. Nothing really stuck until the sun went down. the roads were slick but passable. Karin made brownies! I’m glad we went food shopping yesterday and we have plenty to eat. Getting to work tomorrow morning is really going to suck but that’s alright, at least I get to ride out the storm’s impact at home with Karin and Liam. It’s moving faster than they said it was going to. The snow now is supposed to stop before I have to leave to get to work. I’m glad I left work early enough to get home this early though. Karin already got everything together though so all I have to worry about right now is keeping the ramp and the driveway clear. Who knows if we’ll have to call an ambulance for him. last thing we need then is to have to shovel two feet of snow before they can get a stretcher in here. Better safe than sorry.

6:30pm The Mac & cheese Karin made for dinner is delicious and the best kind of comfort food for an incoming blizzard. The local TV news coverage is equal parts stressful [THE WORST IS YET TO COME!!!!!] and hilarious [and remember folks, it is NOT recommended to use our gas grill indoors.] After dinner I’ll go get the first round of shoveling done.

6:50pm Karin had a great idea and so we moved the coffee table out of the living room and put our mattress into the angle of our corner couch. We’re having a snowed in sleepover. It’s like making a couch cushion fort. We’ll watch movies and it’s perfect for Liam to stretch out on the couch or come down to the floor with us. This is going to be fun.

7:25pm Almost 4 inches already! heavy wet stuff that sticks to and ices everything up. starting to come down really fast too. By the time I had the ramp and driveway clear I could have started all over again. I better get out here every 2 hours If I’m going to keep the place accessible, for someone to come get us or for us to bug out.

8:30pm Couple of flickers here and there but power is fine. The snow is getting lighter and dryer. not really sticking but blowing around. Second shoveling session was much easier. Driveway is clear again but it’s getting deep enough in the street that I’m not sure we will be able to get anywhere soon. Wind is gusty but Sandy was worse.

8:45pm That’s it, I can’t watch anymore news coverage. All we can do now is hunker down for the next 4-8 hours. Time to watch some West Wing on Netflix, the local news team’s banter is hardly Sorkin-esque.

9:00pm Still have power. At this point we have plenty of battery backups to get to the morning anyway. If we don’t have power by then at least Nan or Mom and Dad will. Karin’s got the supplies ready. Wind is whipping that snow pretty good, we aren’t going anywhere until the morning no matter what. If that damn fuse on the utility pole across the street, that always used to go out, hasn’t gone out by know I don’t think it will. The ice isn’t getting bigger or heavier anymore.

9:11pm Damn. Spoke too soon.

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9:30pm The 6 D Cell Mag-light I bought for Boy Scout camp as a kid pays off again. By sticking it between the couch cushions pointed up, it lights the whole living room. The whole neighborhood is out. Liam’s vent is on our oldest lithium battery. It was taken out of daily rotation almost a year ago because it was so old but I figure it will give us three hours. At least we fully discharged his marine battery last week. 11.5 hours there we know for sure. The day-to-day lithium has always given us 8 so we’re looking pretty good there. Feeding pump battery is charged so he’ll eat. I have to go shovel.

10:00pm The wind and the warmth of my breath is starting to build a layer of ice and snow on my beard whenever I go out there. looks like it had to be 4 inches just in the last 2 hours but it is still dry and easy to move off the ramp. Keeping enough room in the driveway for the ramp to extend from his van for us to get out of here is harder. The wind wants to put it all right where I’d like it not to be. We’re thinking about how late we should wait before starting a DVD in the laptop. The big battery/flashlight/radio/thing that Mom gave us can’t charge a vent but at least we can charge our cell phones and the laptop if we have to. No wifi though. Oh well, kidd-o is warm and we’ve got plenty of blankets.

10:15pm Belush lost power too and he’s in Seekonk! Mom and Dad lost it and they all say they lost it at the same time we did. It’s a huge outage. That’s good news. A downed power line knocking out a few blocks is hardly a priority but two or three whole towns? This will get back up soon. It’s a substation or something. Has to be.

11:30pm Just remembered that even though we put in a HME, Liam’s line has still been hooked into the humidifier. Ugh, I hate missing things like that. The water hadn’t cooled down much at all. Glad I caught it now. bypassed that so the moisture in the line doesn’t cool him off more. No movies yet. I can’t get the damn Battery/Radio/flashlight/thingy to pick up any radio station. Radio part being an afterthought the tiny dial just can’t dial in to anything. Wondering how widespread the power loss is. Taking turns charging cell phones but also not using them at all to preserve the batteries for morning. I have some shoveling to do.

11:50am The Pulse Oximeter battery is always a little wonky and I’d like it to get us to morning so we’re shutting it off and only doing spot checks. Turned on a whiff of oxygen just in case.

Saturday 02/09/13 12:10am I’ve never seen it pile up this fast. Drifts are starting to put more and more on the top platform of the ramp right at our door. Driveway is clear but what’s the point? The snow in the street is halfway to my knees.

12:30am All of the shoveling is keeping me warm but Karin says it’s getting cold in here. Liam is still asleep but she had to add another layer of pants and socks and put another blanket on him. He does look adorable in his hat though. His cheeks are getting cold.

1:00am She’s right. It’s getting cold. But under the blankets we’re doing ok. Lying down to try to get a little sleep. Hoping that by the time I open my eyes it’ll be 4 or 5 in the morning and we can find out who has power and get going. Don’t want to wake him and move him to between us on the mattress but we can if we need to keep Liam warm. Getting a little concerned that if we totally cover him in more blankets that the cats will see him as a comfy bed.

1:30am Get some sleep. Ha, that’s funny. Time to shovel.

2:00am I can’t wear the my coat anymore because the sleeves are frozen shut. My gloves also froze into blocks so I found a few more sweatshirts and a lighter but more waterproof jacket. Karin’s mittens were on the kitchen table. knit mittens in a Blizzard.

2:18am Lithium battery just ran out of juice. That’s like 5 hours out of it when I only expected 3. hooking up the marine battery now which will give us 11.5. We better not need that much. I’m realizing now that ventilator power was never the real issue. The suction rig power is much less reliable. Once he wakes up he’s going to get juicy for sure. I’m a little worried about that now. I don’t expect the power back until the morning, but still hoping it won’t be days like they are predicting on the local news cell-phone app. I hope Liam stays warm enough and asleep until they get it on.

3:00am I’m getting scared now. Liam’s feet and hands are nice and toasty under the 9 blankets we have on him now but what about when we have to change him? How are we going to keep him from catching a chill? There’s no way we can get out now. They better get the power back up.

4:15am What the hell am I going to do? I stopped shoveling around the van. I have a path to the ramp wide enough for the stretcher when the Rescue comes. Karin hasn’t slept either. It’s getting really cold. Liam still hasn’t woken up. How am I going to keep him warm when he does? My hands hurt. What if no one can get to us?

4:45am The sun won’t be up for a couple more hours. Shoveling doesn’t warm me anymore. All of my jackets sweatshirts freeze between sessions outside. We’re waiting for daylight. It’s still too dark to see anything. There’s a light on a little more than a block away. I’m not sure if it’s a house with a generator or the school department building emergency flood light. At daylight I’ll walk up and find out. Maybe if it’s a house they’ll let us come inside and warm up. We’ll have to wrap him in all the blankets and walk or something. It’s up to my knees in the street right now. When the sun comes up I’ll try to walk up there.

6:00am I can’t believe that Liam is still asleep. Not exactly sunrise but the sky is getting brighter. We can’t stay here much longer. I guess we could get the van running and put him in there for some heat but I don’t want to give him a chill bringing him out in this wind. I don’t know what to do anymore. I’m going out to shovel again.

6:35am The sun must be up by now but the clouds and wind haven’t let up yet. The snow is much finer making my beard and face hurt more now. I’m not sure that the Ambulance will drop us off at my hospital and we can plug-in at my office or they’ll make us get admitted to the CHildren’s Hospital. If they bring us there what if they make us stay for a week after taking cultures or something?

At this point it doesn’t matter.

Either one is safer than staying here.

6:48am It’s time to call 911

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******

Part II will come tomorrow (hopefully).

Throughout this whole ordeal, Karin kept trying to calm me by saying things like “This! This is where you’ll leave the cliffhanger when you write the blog about this mess.” It was adorable and actually it did calm me down. So I guess you can all blame her for dragging this story out. They won’t all be this long and they won’t be in this style anymore. I’ve got other tricks up my sleeve. I Just thought this would be a fun way to tell the first part.

Blizzard Interlude

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I know I promised you the first part of the story tonight. I just didn’t get it started finished yet.  Instead I had a really pleasant, productive, and yet somehow relaxing day off of work. The first since before the storm. Liam’s night nurse has arrived (also a first since before the storm) and a full night of sleep is just what this family needs. Don’t worry, I’m not going to lose my steam on this story so you will all have to indulge me for the next week or so.

As a reward for your patience here are a few pictures of yours truly from the Blizzard of 78. After finally losing heat in addition to power my Mom and I went to hunker down at my Nan and Grampa’s house. My Auntie Carol took these while we were there. She sent them to me this morning after reading my post from last night.

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Thank you so much Auntie Carol! And while I don’t need to borrow it to take my picture next to it again, A picture of Liam and Kermit would no doubt be pretty adorable.

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Fighting Nemo – The Blizzard of 13 part I

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I think most of the native Rhode Islanders that are my age or younger grew up under the ever-present clouds of the Blizzard of ’78. Clouds hanging in the stories told every winter. Told every time the forecast calls for snow. Recalled every time the response time by city and town governments to clear snow or close schools is not perfect. Stories joked about every time the convenience store runs out of bread and milk at the mere mention of the possibility of the chance of maybe getting some snow.

I grew up hearing the tales and seeing the pictures. The bread and milk thing becoming a cliché of sorts but nonetheless true. I know now that the almost comical panic to stock up on food is not the paranoia of a skittish population but the lasting psychological effects of a community’s PTSD.

For my own Blizzard of 78 story, I rode out the storm and its aftermath at home with my mom. I was nine weeks old. My father, stranded in a work truck on the wrong side of the river. The highway and bridge made impassable not only by snow but also abandoned vehicles, it would be three days before he could get back to us. I can’t imagine the stress and worry that both of my parents endured in those three days, or at least I couldn’t. Not until this weekend.

Now? Well even though Karin and Liam and I stayed together and the entire ordeal lasted less than 48 hours, I think I have a pretty good idea.

Everyone around here has a Blizzard story. My friend Steve was born during the storm after his Mom had been brought to the hospital, not by an ambulance, but by a National Guard unit. An older coworker once told me that his first marriage ended during the Blizzard when they got snowed in for two weeks and she was upset that she couldn’t get out to see her boyfriend. New Englanders after all, we sure do love telling our Blizzard stories.

I have a new Blizzard story now. And while the Blizzard of 13′s snowfall totals may not be as high, and technology allowed for a level of preparedness that would have been impossible in 1978, it’s a story I won’t soon forget. It’s the story of the most stressful and scary 26 hours of my life. Far too long for a single blog, I’ll post it in chunks over the rest of the week.

Spoiler alert — we’re all fine. Liam is at home and snuggled in his own bed. The lights are now on and my radiators are warm, but for one unbearably long day none of those things were true and Karin and I had no idea how long it would be before we could say any them again. But I’m getting ahead of myself there, because when this story starts we thought we had a plan. A plan that for me, began with a whole lot of shoveling… (you’ll see)

We’ll start there tomorrow.

Look Ma! No Volume Support.

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As complex as Liam’s medical needs are, even the biggest of accomplishments can be wiped clean by the backslide of an illness or a long hospital stay. Now, we could focus on how depressing it is that while last year at this time Liam was walking in his walker a couple of times a week but after last summer’s 40 day hospital stay he has only done it once in the past 6 months. We could focus on the fact that he’s NOT doing something as often or as well as he once was but that just doesn’t sound like us now does it?

Instead, and in true Olson fashion, we simply relish the fact that we get to celebrate certain accomplishments again and again! What could be better? Last year alone we got to celebrate Liam’s “first” day of school three times.

How many families get to say that?

Well, we do. We get to say that and tonight we got to celebrate something again. For the first time since July Liam spent 30 minutes breathing on his own without the aid of his ventilator.

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No doctor’s orders or therapist’s suggestions. Just Liam’s Mom deciding that it was time for him to do a little more work today. Just a wonderful picture to surprise me at work. Just the knowledge of a parent that it was time. That he was strong enough again. That whatever vent setting adjustments and illnesses may have delayed the progress of getting Liam off his vent that his Mom knew that he was ready and who in the world is better suited than a boy’s mother to make that call?

The First Post Back

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So let’s just recap a few things first here,

I got to be on the radio, and then on TV.

I got to make a movie.

I got to walk around on the field at Fenway Park before meeting Terry Francona!

I’ve made friendships, real friendships with people from California, Ohio, North Carolina, California. As far as The United Kingdom and as close as Massachusetts to name only a few and, just as nice as making new friends is, as recently as last week I reconnected with a high school friend I haven’t talked to in 17 years.

Even in just the last month I have received emails from three parents of kids of all types of special needs, thanking me for sharing Liam’s story because it has helped them with their own. (I am absolutely humbled and touched by every single one of you.  Thank you all so much.)

And none of it, None of those things would have ever happened had I not grabbed onto Liam’s coattails and exploited his strength and character by starting this blog to tell our story to the world.

So why then have I only posted twice in the entire month of January? I’m not being rhetorical. I’m genuinely asking, please, if any of you have any idea what happened to my blogging or have seen it anywhere, please send it home or at least let me know. All those nice things happening was great and I’d like it to continue.

I suppose if I had accomplished some sort of monumental achievement or goal during the month I could point to it and say “Hey, get off my back I did this great and awesome thing.” But guess what? Yep. Good guess, I got nothing. Nothing but some rest, and some reading done, and a sense of guilt and dread whenever I get online and realize that yes all of those wonderful friends up there in that list have blog posts up that I haven’t read yet or commented on. More than a few.

I’ve been writing. Er, well I’ve been trying to write, and the last time I sat down to write a blog post the piece decided to digress into something different. Something longer. Something not quite right for a blog. Other ideas sit as drafts half-baked and unfinished, the longer I went without posting the more pressure I put on myself that the first post back had to be The First Post Back. And on and on it goes until I realize the damn groundhog came out and a whole month has slipped by.

So here it is. The First Post Back. now that it’s out-of-the-way I can get back to writing about what’s really important again. Like my kid pooping in his class and how Karin and I never get any sleep.

Thanks for sticking around.

And The Walking Boy Walks

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On Twitter last night I made fun of myself a bit for being too lazy to post here. I have been writing, I just haven’t been happy enough with anything that I felt I could post it here. With today being my day off I had high hopes that I would get some writing done today and was confident that I would polish something enough to post. I suppose that there’s a chance I still might.

But instead, and only because how could I NOT post this, I have to share a photo.

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Liam has been reluctant to work in his walker lately. In fact on the way home from school today Karin and I realized that Liam hasn’t had a good day in his walker since before the month-long hospital stay last fall. Don’t get me wrong, he’s worked hard all school year but he had so much physical therapy to catch up on that he simply didn’t have the strength.

There’s nothing better than having a day off of work on any of Liam’s school days. Then I get to pick him up and participate in his therapies. He may have been holding his Mom’s hand in the picture above, but he was also walking towards something today.

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His Dad.

Our holiday in pictures.

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And the hustle and bustle of the holidays end and we fall into old routines or embrace new beginnings. I haven’t made any resolutions for the coming year but I have set some goals. I’ll keep the details to myself but suffice it to say that if I follow through on some of them the results will be seen here.

And so as I so often do when I return from a long hiatus I will ease the pressure to write anything worth reading I will dazzle you with photos of my boy and our adventures.

And adventures we did have.

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On Christmas Eve we packed up the van and headed down the storied Connecticut Turnpike for a holiday celebration that’s been a long time in coming. Karin was able to spend Christmas with her own parents for the first time in 5 years. Liam was able to see his Grammy and Opa on Christmas for the first time in his life. The Olson’s were heading to Jersey!

The ride was uneventful. Just as we had hoped it would be, and as we crested a hill and passed the sign marking our entrance to Wanaque New Jersey, our destination, the first flakes of our white Christmas hit our windshield. Like magic.

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Christmas day was filled with visits and meetings with relatives not seen in years. Stuffed with good food, good drink, and great conversation my in-laws brand new house felt like home even though it was our first ever visit there.

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Liam was incredible. Well behaved and happy he stayed awake and engaged for almost all of the festivities. We asked so much of him between the long car rides and the overstimulation of a new environment and meeting so many new people I was amazed at how well he responded.

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He even got to sleep in a big boy bed. I’m talking really big boy, like king sized. A kid could get lost in a bed like that.

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The return trip would be the afternoon of the 26th, Liam’s fourth birthday. He had breakfast with his Grammy and Opa in the morning and had dinner and birthday cake with his Meme and Grampa, he’s a pretty lucky 4-year-old. Over those 48 hours he also saw his 4 Great Grandparents as well!

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Before Karin and I even knew what was happening an impromptu birthday party broke out as aunts and uncles and cousins from all over began stopping by to wish Liam a happy birthday. Since we had been away for a few days and had returned home from NJ less than an hour before all we could offer our gracious guests was tap water and a small cake my mother baked for Liam but no one seemed to care. We hooted and hollered and filled the house with laughter for a while.

We don’t have candles in our house, we have oxygen tanks instead. But on Liam’s birthday we throw caution to the wind and light a few because every child should have candles on their birthday cake. We turn the supplemental oxygen off and even pop off Liam’s circuit and point the tube at his cake so that Liam’s vent “blows” out his candles. We’re a little weird that way.

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So that was our Christmas Eve, Christmas, and Liam’s birthday in three crazy days and over three hundred miles of travelling. It was wonderful. If I had the energy I’d try to wrap it all into some neat little narrative package. But I don’t so I’ll let the pictures try to do that.

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What’s that smell?

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Liam had a HUGE POOP at school today. I just finished cleaning his chair. — K

I’m thinking that somewhere there may be families out there who outgrow texting each other about poop. We’ll never be one of them.  When I got the text I chuckled and moved on to the next thing on my plate at work that afternoon but something started gnawing at me. Something I hadn’t thought of before.

A few posts ago I talked about how I had never thought much about Liam making friends. I guess I never thought much about the flipside of that either. Maybe in a general sense of being accepted for who he is but the specifics of social situations that Liam would find himself continue to be hard to imagine.

So I called Karin. I wasn’t going to get much more work done if I didn’t. “Do you think the other kids make fun of him when this happens? I mean, what do the other kids say?” I have always loved the fact that Liam is in an integrated classroom along with children of all needs, from “typical”, “normal” kids all the way to, ..well, Liam, and many shades between. At this age especially, it benefits them all. But what are the other kids going to say about the kid who poops in class? This isn’t the first time it’s happened for sure, but the image of Karin having to clean Liam’s wheelchair when he got home jarred loose a fear that it wasn’t the wheelchair, the vent, or even the seizures that would isolate Liam from his classmates, but things like this.

Karin assured me that everyone at school loves Liam and it’s happened before so I shouldn’t worry about it at all. She directed the conversation to how good the rest of his day was and I went back to work. Half an hour later Karin called me back.

“I was thinking about what you said and so I asked W (Liam’s nurse) about it. Liam and his friend A were holding hands and working on a craft the whole time “it” was happening and even he had no idea why W excused Liam to the nurses station to change him. I don’t think anyone other than W even knew what happened.” She said. I guess my asking got Karin thinking about it too. I don’t think she was ever worried about it like I was, but enough of a thought that she asked W for more details.

“Besides,” she said “according to W he was only one of the three that pooped in class today.”

9 kids varying from typical to medically complex and 3 of them pooped in class just today?! What the hell am I worrying about?

My kid is fitting right in.

Night Shift

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I’m generally not the guy to post news, be it good or bad, as it happens. It took me a week to post about taking Liam onto the field at Fenway before his first game there, a truly life changing moment, so the timing of this post alone should explain its importance.

In only minutes Liam’s new night nurse will arrive for her first overnight shift. She has trained here with Liam and his daytime nurse for 30 hours and so, she is comfortable with us. She seems competent and confident, she is gentle and sweet with Liam and even talks to him (which you would think wouldn’t make her special when it comes to nurses but we’ve found that not to be the case). She seems to be happy to work nights and has given no indication that this is just a placeholder job until something better comes along (also a common theme found in overnight nursing). In other words, she was sent from above.

September 4th. The last time I went to bed before 4am. The last time Karin was able to sleep past 4am. The last time we slept in the same room. In only minutes it will come to an end and we can take a deep breathe and get some rest. So it’s going to be pretty funny when neither of us get any sleep at all. It will take a while until we get used to trusting someone new to take care of Liam without either one of us. Even if it is overnight.

Get some sleep out there folks. I know we are going to try.

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