family

Let’s Go Fly a Kite

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

 

Or so I thought.

 

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

mom and liam

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

 

liam kite flying

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

Family kite flying

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

The Babysitters Club

It was only a few minutes. Barely half an hour as a matter of fact, but someone had to go get the pizza. So we took the long way across town, both of us, together. Without child.

No calling the nursing company scheduler, no need to involve the insurance company. No advanced degrees or scrubs anywhere. Just two grandparents watching their grandson while his parents left the house for a little while. It was the first time it’s ever happened.

There’s a few things left for them to learn and they still haven’t changed a trach all by themselves but my mom and dad have worked so very hard over the last 5 or 6 months to learn how to care for Liam so that they could babysit. Check out the picture that my mom sent us while we were gone, they don’t look nervous to me.

We won’t be hitting the cape for the weekend or even catching dinner and a movie just yet, but running cross-town for a couple of pizzas was a cool first step.

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Thankful

For Liam’s vent, because nothing will work better at ensuring that Karin, Liam and I will be home in time to see the kickoff of the Patriot’s game after Thanksgiving dinner better than the phrase “aww shucks, looks like we’re almost out of battery power.”

For Liam’s pulse oximeter, because watching him fake that he’s asleep when he gets overwhelmed seeing all his relatives at once is one of the more adorable things you’ll see. Watching his behavior and how it correlates to his heart rate just proves just how impressive an actor Liam is.

For cell phone cameras and nurses who enjoy playing dress-up at school.

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For the superhero in my life who inspires, amazes, and strengthens me more and more each day.

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For family

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For all the little things that make our life our life. It may not be perfect but there’s a whole lot more than just this list within it for me to be thankful for. It’s nice to take a moment and remember what they are.

I hope you spend the day finding joy in the things you are thankful for.

Happy Thanksgiving.

Chicago — #janphi

A few years ago and only shortly after Liam had come home for any significant length of time, my father and I drove out to Springfield Massachusetts for my cousin’s Eagle Scout Court of Honor. I remember getting more and more anxious with every passing mile knowing that this was the farthest I had ever been from him. About an hour in and only 2/3rds of the way there I realized that if an emergency had happened at home there was absolutely nothing I could do to help. It was an uneasy and uncomfortable freedom. I knew that no matter the emergency Karin would be able to handle anything that could happen and I was in a weird sense, off the hook and so I should have been able to enjoy myself.

Except that of course I couldn’t. Of course I fidgeted nervously through the speeches and accolades and aside from the short speech and presentation of the award that I was a part of (I am an Eagle Scout myself) my head was at home the entire time. My father and I had a light meal and a piece of cake with everyone and commiserated for just the appropriate amount of chit-chat before ducking out to speed home since after a few hours outside my bubble of usefulness as a caregiver I was beginning to get a little twitchy.

So you can imagine my anxiety this past Saturday morning as I left the house before dawn to get on an airplane headed for Chicago to see my younger brother marry his longtime girlfriend and my new sister-in-law, Jannah. I packed light and wore my suit on the plane in order to save time since the ceremony was taking place only a few hours after my arrival. A change of clothes was all I needed anyway since my return flight stood firm only 49 hours later. I’ve never travelled by plane alone before. I’ve never left Liam for more than a day before. I’ve never stood in the doorway of the house knowing that absolutely anything in the world could happen for TWO WHOLE DAYS and I would be powerless to help, or prevent any of it. There is still not a doubt in my mind that Karin could handle anything anyway but that knowledge didn’t settle my nervous legs from rattling the seat in front of me. Didn’t calm the what-ifs as the jet lurched off the ground to start my deepest separation from Karin and Liam in his entire life.

This wasn’t the plan at all.

The plan was for Liam and Karin and I to pack up the van and make a three-day drive out to my brother’s place to take part in the nearly weeklong festivities that will forever be known by its instagram hashtag — #janphi. (go ahead and search it. It was a hell of a time.) The plan was for me to participate in the time-honored fatherly tradition of taking his family on vacation. A road trip no less. The plan was to rejoice in the celebration of the love between my brother and his wonderful fiance with my own wonderful wife by my side. That was the plan, but as any special needs family will tell you, All plans are tentative.

All of them.

The wedding itself was wonderful. Quirky and non-traditional, emotional and touching. The happy couple with each of their families coming from opposite coasts to meet in the middle of the country rose to the challenge of keeping them all entertained. A feat nearly impossible, it would surprise no one that they pulled it off. It’s what they do. But while I could detail the bits that even I got to be a part of given that I was only able to attend the weekend portion of the program, PressureSupport.com is at its heart a blog about my journey parenting Liam. One that I had not anticipated including any journeys taken without him.

It’s the blood clot. Actually no, it’s the blood thinners taken to reduce and destroy the blood clot, and their increased risk of bleeding. Whether internally at the site of the clot, the belts and buckles on his transport laying near to his thighs and hips knocking a too large chunk of the clot free, or the possibility of cranial bruising or bleeding that a long car ride may have created with his head bouncing off the head support of his chair. Not only an accident or sudden screeching stop bringing risk but even just the 18 hours of bounce and rumble in what we could have only hoped would be a calm, leisurely drive.

We consulted with doctors. We consulted with each other. We consulted with Liam. When it was all said and done we knew what the only smart decision could be. In fact I’m pretty sure we both saw the writing on the hospital room wall at least a month before the decision was made but were both unable to admit it.

All plans are tentative. Even the ones that mean the most to you.

Of course I couldn’t miss my little brother’s wedding. So a new plan was put together. Thanks to my mom and her planning skills, hotel plans were changed and flights were booked. With everyone else flying in on Wednesday I’d fly in early saturday morning, only a few hours before the actual ceremony, then fly out early monday morning in what would up being only a few a few hours after leaving the actual reception. Like I said, this wedding was a week-long affair.

I am happy I went. I wouldn’t have been able to live with myself had I missed it and the amount of fun I had dwarfed what I thought would be possible in the three-week long anxiety attack I suffered in the build-up to leaving my wife and son. But even in challenging my expectations, much of the fun was mitigated by a feeling that a large piece of me was missing. A feeling that had it been there, would have helped me to appreciate the moments fully. Off hand comments and gestures to a partner in crime who wasn’t there. A celebration of love taking place a thousand miles from mine.

I could say with some truth that the highlight was the burgers. A rain-soaked “reception” at the downtown hot dog place. One of my favorites in Chicago since Karin and I had eaten there with Phil and Jannah about 4 and a half years ago. (Liam was there too. and he would help his mother give those delicious hot dogs back to Chicago only minutes later.) But it wouldn’t be the whole truth.

I could say and almost be honest that the highlight was the three and a half hour walk I took around Chicago on Sunday afternoon. Without a doubt the longest chunk of time I have spent by myself in the almost four years since Liam was born. Dodging intermittent showers and even a tornado warning that the weather service pushed to my smartphone warning me to keep vigilant and duck into one of Chicago’s towering buildings should I see anything strange approach. Had I had a plan I would have just walked directly to the Art Institute of Chicago and wandered the galleries trying to check off the sections I didn’t have time to see on our previous trip there. Instead I took in the artwork that is the city of Chicago. It is a walk I will not soon forget and a truly fulfilling experience in a fiercely personal way. I am usually a nervous traveller. My anxiety being focused on what could be going on at home grew into a confidence in my step as I explored a distant city taking many of the photos in this post. Like I said, I could say that was the highlight. I’d almost be honest saying so.

Was it the speech? Heartfelt words from my brother to the gathered guests during a  barn burner of a party at Revolution Brewing. When Phil spoke of his amazing nephew and how much he wished that his own sister-in-law was present. A speech  that set me to tears that wouldn’t stop until bordering on the awkward. Yeah maybe the speech was the highlight. It was seldom mentioned but understood by my family how much I wished my own family could have been there with me. To hear Phil talk about how much it meant to him as well, was a pretty special moment. But I think I can think of one more.

While I was out having fun, surrounded by friends and family, food and booze, brand new friends and even more booze, Karin was at home on 24 hour duty. Her parents came to visit and help around the house. The time alone, I mean really alone, could not have been easy for her. Seizures, suction and ventilators and I will forever be grateful for her understanding and support of me going on my own to represent our little family there with my brother who wanted us all to be there. She is a truly remarkable wife and mother and the sacrifice that she made this weekend weighed on my mind. My anxiety came not that she wouldn’t be able to handle whatever could have happened with Liam while she was alone, but that she would handle it perfectly. I have seen Liam start a morning with the sniffles and end the evening being admitted into the PICU. It can happen that fast. It’s not his fault and it wouldn’t have been hers but I had a very irrational yet very real fear that I would return to Rhode Island and have to drive to the hospital from the airport instead of our home. The idea that Karin could go through something like that without me made not only my stomach but also my heart ache.

So I suppose if you were to twist my arm, I mean, to really draw it out of me, back to the wall and gun to my head, the number one highlight of getting on a plane and going so far away?

Today. Coming home. Seeing this boy and the smile on his face.

Thank you for a wonderful weekend Phil and Jannah. Congratulations! I love you both and am inspired by your happiness. And thank you to you mom and dad for making it possible for so many of us to be there to celebrate with Phil and Jannah. But most of all thank you to you Karin and Liam. For understanding why it was important for daddy to leave you both alone, and for making sure nothing crazy happened that mom would have to tell dad about over the phone. Pretty sure my heart wouldn’t have been able to take it.

Thank You for Thinking of Us, Now Stay Away.

 

As you can see we are all very excited that Liam is home.

Yes, we are all at home now and we are going to savor this time. When I come home from work tomorrow night I will raise the drawbridge behind me. Release the gators into the moat and begin a weekend of family time in a sublime little bubble of privacy. No nurses, no doctors, no visitors or well wishers, no unit assistants to fill the med-cart, no family, no friends, no case managers with “just one more thing…” It will be me, my wife, and my boy in our home.

If I owe you an email, a tweet, or a blog post explaining how a 3-5 day hospital stay to start the ketogenic diet can turn into a 35 day PICU stay containing some of our scariest moments, I’ll get to it next week. (maybe) but for the next three days I will be a little boy’s father and not a patient’s parent.

Thank you, thank you, thank each and every one of you for reading the blog and sending all of the kind thoughts, comments, instagram and facebook likes, emails, tweets and texts of support and congratulations. Feel free to keep them coming because they all make us smile and it always helps to know how many people are pulling for us. You all have helped us get through the last month and I know many of you are pretty excited that we are at home now and for that I thank you again.

I’ll talk to you all sometime next week.

And the Rocket’s Red Glare. Happy Independence Day

In my earliest Independence Day memories my family would walk down the street to Sabin Point Park for the enormous, unsanctioned, and tremendously unsafe neighborhood bonfire. Bottle rockets zipping around all over the place while all the kids waved around sparklers. It was loud, it was dangerous and it was FREAKING AWESOME.

But as much fun as 6-year-old me thought that running around dodging bottle rockets near an enormous fire was, Mom would have none of it and so after a couple of years the remainder of my childhood 4th of July’s would instead involve professional fireworks displays put on at the local minor league baseball stadium or here in town after an oldies band of course (even when some traitor decided it was ok to start doing all the fireworks on the 3rd. Or no, no let’s do it on the weekend, Yeah it will still ring true on the 6th, right?? aargh, Don’t get me started…). So growing up, I seldom got the chance to partake in the american tradition of blowing stuff up for the 4th.

But I still remember that thrill of seeing my dad lighting off fireworks at Sabin Point Park.

With fireworks being legal this year here in Rhode Island and the whole neighborhood being covered in a dense layer of colored gunpowder smoke for the past three nights how could I deny that kind of fun to Liam?

So just after dark and safely across the street from my house in a huge empty parking lot behind the closed and empty school, Karin and I took my boy out to blow some stuff up.

It was so much more fun than I ever thought that it could be.

I will of course mention that the entire thing was done safely. We left the oxygen tank inside, and the fireworks I purchased were a ground firing type producing a tower of sparks and colors only about 10 to 15 feet high but over a minute or two instead of the rocket type which fire into the sky. These ground bursts were so much better for Liam to focus on and process that he was enthralled with every one of them. Seeing him wave his arms and kick his legs as the sparks started to fly was beyond incredible.

Now I’m hooked.

I didn’t buy enough.

So next year? Oh next year is going to be a blast!

If you are reading this from the USA then I hope you had a great 4th. If you’re not then I hope you had a great Wednesday.

I know I did.