The Holden Flynn Foundation, Inc.

Nicole and I always said that once Holden's heart issues were stabilized, we were going to do more for the CHD community. This past December our family took the steps to create a foundation in Holden's name to assist us financially when we had to relocate to Gainesville. With his passing, we are still going through with their plans, but changing the direction of the foundation to carry on Holden's fight and spirit.

As many of you know Holden always enjoy his wagon rides, (or parades as it was sometimes called). We'd take him all over the place, and the slightest pause was greeted to with a quick command of "Go!". As his health declined, the number of IV’s he required sometimes limited that wagon time, or made it difficult to travel because of the number of people needed to participate. It was tough for him, because Holden needed that time. It was his his time.

We are going to take a portion of the initial money donated to the Holden Flynn Fund and purchase of some wagons and cars fitted with IV poles for the hospital. We want to give other hospitalized children the opportunity to go on parades and experience those same joys and freedoms that Holden felt regularly. 

The ultimate goal of the Holden Flynn Fund is to create a foundation that will honor the spirit of our son and his battle with CHD. The ball is rolling, and in the coming weeks and months we will have more details as we assemble the appropriate paperwork. If anyone wants to assist, please feel free to email us, and we'll be in touch in the future.

 
Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:

David Vaughan Investments, Inc.

Attn: Amy Cowen

5823 N. Forest Park Drive, Peoria, IL 61614

OR ONLINE (Please understand that the donations added via Fundly will be later wired to the Schwab Charitable Account. Tax deduction letters will come through Fundly and NOT Schwab) For LARGER donations you are encouraged to directly send a check or money order.

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All donations are tax deductible.

Thank you, Trey and Nicole Flynn

Please feel free to share this with your family, friends, etc. 

The Tin Man's Heart Watch Day #65

With heavy hearts, we write this.

At 3:30 PM yesterday Holden Joseph Flynn passed away in the loving arms of Nicole and with family by his side. He lost his battle with congenital heart disease, but fought like heck until the end. We will miss our son. Our Tin Man. Our hero.

The Tin Man's Heart Watch Day #63

Sister Mary Holden. (He put that there)

The Tin Man's Heart Watch Day #62

Oh hi.

The Tin Man's Heart Watch Day #61 (HAPPY NEW YEAR)

Holden? He didn't make it to 7:30pm, much less midnight.

Mom and dad conquered dinner at a local establishment. While driving back to the temporary abode we drove past the campus at the University of Florida. In our years at the school, we were never around for New Years, so checking out the campus life on this kind of night intrigued us.

There were maybe 5 students in town on New Years Eve. Every establishment across from campus was closed...except for one spot...When we saw the lights on we pulled over and walked into one of our old college stops for a beer. It was nice. First time we got a spot on the street up front, and the first time we got a booth.  We even ordered the Natural Light or whatever skunky swill they had for $1. You'll see in the picture below, it was relatively empty.

Despite those shenanigans, we didn't last long, and found ourselves back at the temporary abode to watch the ball drop. I called at 11:45 to check on Holden, telling the nurse we were going to bed. When she asked why we weren't staying up until midnight, I replied, "We are, but only to make sure the world didn't end."

Happy New Year!

The Flynns.

The Tin Man's Heart Watch Day #59

Daddy is back

The Tin Man's Heart Watch Day #58

Holden is all settled in at Shands, and he has developed a personal alarm system. You'll see from the following two photos, he kid wraps his hand around one of the bars when he goes to sleep. When the bar moves, they're coming to mess with him. Quite genius actually.

Luckily, late night contact is minimal, and he's slept pretty well despite being someplace new.

The Tin Man's Heart Watch Day # 56: Arnold Palmer Saves Christmas

Another amazing film by StongFilms.

 As a parent of a child who has spent two Christmases in the hospital, Arnold Palmer Hospital for Children has always been amazing to us. Jon Strong throws together some amazing, emotional stories. Thank you for allowing us to share the screen with a legend like Arnold Palmer.

The Tin Man's Heart Watch Day #55 (Christmas)

We didn't get our Hallmark Channel Christmas movie new heart miracle (I was all ready to announce Ryan Gosling for my role in the made for TV movie.), but the day was still amazing. Thank you to the Arnold Palmer hospital for allowing Holden to escape the madness of the machines for a few hours to spend time with his family. Thank you to the support staff, nurses, and doctors for holding the potential furlough at a secret level that would have the Illuminati blushing. Thank you the the numerous people who made sure Holden was well enough to go home.

I have some pretty solid Christmases over the years, this one was without a doubt, the best ever.

Pictures below. - Trey

The Tin Man's Heart Watch Day #54(b)

 

These are our cousins Jordan and Charley. The other night this picture buzzed through my phone along with a message from our cousin Capresse.

"Jordan wore his Tin Man sort tonight. We talked about Holden's heart as we often do. Jordan said he would just give Holden his."

Background? Jordan and his sister Simone joined our family four years ago last week after being fostered by Capresse and her husband Kenny. While we'll respectfully decline his offer for his heart, it shows how awesome of a kid Jordan is. He's been through a lot himself, but always find a way to make everyone smile.

Merry Christmas!

The Tin Man's Heart Watch Day #54

Can you believe it is Christmas Eve? One of our family's traditions is to hit the streets and morph into judgmental Christmas light hawks. We're the type that halfheartedly throw lights on their own house, then roll around town seeking something better than our own grease job. Rarely do we find a house that has mastered "the look" making us, by all definitions, foul human beings when it comes to exterior illumination.

The usual trips would send us aimlessly wandering through neighborhoods discovering homes decked with a single strand of lights or with a couple inflatables piled upon other inflatables. It's nice, but never jaw dropping by our inflated standards.

We eventually make our way to the legitimately extravagant Lake Arnold Place. It is a quiet street famous for going all out for the holiday since I was a youngin'. Every Christmas Eve a parade of cars slowly rolls down the avenue, they leave their lights off and blare Christmas music as if the piped words of Ella Fitzgerald or Bing Crosby was actually Metallica. It sets the standard in Orlando.

Last night we went down that street a night early, blaring music with our window down the way my family had for decades. Only this time, we recorded it.

If we can't bring Holden along for our family tradition, we're going to bring it to him. This house featured in the video below has been a sight on that street since I was Holden's age. Here's to the lights!

The Tin Man's Heart Watch Day #53(b)

With Holden waiting for his new heart, we’re going to be spending Christmas in the hospital for a second year. Not that it’s a horrible thing. We’re still together as a family, and that is what is important. While we would certainly love to be home, there are noble list of reasons why being in the hospital on Christmas Day doesn’t have to be a bad thing. Allow me to share them with you.

 1) The holiday décor at the hospital is White House worthy. The hospital buys into the Trey Theory that there is no such thing as assassination of class via garland. If I had unlimited funds, I would wrap the entirety of my house in plastic attic smelling greenery. Garland is Christmas’s answer to salt. Garland is what Kudzu wishes it was. Team Garland forever and ever and ever.

 2) The hospital menu offers a selection of turkey, stuffing, mashed potatoes, and pie. Risking one's own health in the name of a major holiday meal is always a concern. If you’re like me you love to cook, but recognize that dish towels can make for a quick tourniquet. As most Americans know these days, having someone else cook meals for you can be ideal. If it wasn't, famous inventors like Ben Franklin wouldn't have invented restaurants like TGIFridays.

So when the Maître D who carts the tray up to the hospital room it should come armed with a placard that reads, “YOU CANNOT BE PHYSICALLY MAIMED BY THIS DELIVERED MEAL, BUT IN THE OFF CHANCE THAT YOU ARE, THE ER IS ALWAYS OPEN.”

As far as the quality of said meal? You can deal with the salmonella later. Later isn’t now.

3) You’re not judged for taking a nap. Nobody ever looks into your kid’s hospital room, sees you sleeping at 1pm, and immediately labels you as lazy. If I were to do that at the office? Unemployment. At my family’s on Christmas? Depending on who the witness is…Avoiding the cleaning process or intoxicated. Sometimes it’s nice to kick back and fall asleep at random hours. You’ll pay with jolting neck pain eventually, but again, later isn’t now.

4) Your tree probably won't burn down because engineering has given it the thumbs up. Ever see an old timey Christmas card and think, “What the heck were people thinking when they attached live flaming objects on a dying, drying pine tree?” Well, apparently trees can still catch fire for faulty wiring. Not at a hospital though, electronics require the pope’s blessing before they can get plugged into the wall. SAFETY.

5) Even if your tree burns down, it's not your house. Relax, the hospital rooms come armed with sprinklers.

6) The staff has to listen to you talk, because they have to be there. My family can run away from my hilarious jokes, but the nurses and support staff would need a new career field if they did the same. Besides, I think they find my kindly banter entertaining and a good way to drown out the fact that they’re at work. I’m like the hospital’s version of Chuck E. Cheese.

7) Rubbing alcohol makes for a harder drink than bourbon, or whatever else you like. Just unwrap 30 or 40 of these thingys and add them to whatever you happen to be drinking. There are a lot of risks. If you luck out and it doesn’t make you gravely ill, it probably will blind you. I preach it again, later isn’t now. (Note: We don’t suggest or encourage you drink alcohol anywhere in the hospital, especially not isopropyl alcohol. – Lawyer’d)
 

One of these thingys

Being serious though. We're here for a great reason, and while it isn't the ideal setting, we're together. I'm going to go ahead and apply 34 years of personal television Christmas special science to our situation...Santa will hopefully be delivering a heart tomorrow night, giving Holden a chance to spend his next 100 Christmases at home.

MERRY CHRISTMAS TO ALL! HERE IS TO A GREAT 2014!

The Tin Man's Heart Watch Day #53

Just a boy and his fishin' pole.

The Tin Man's Heart Watch Day #52

(Warning the following pictures contain photos of a potato-y graphic nature)

 Potato Soup. Like a boss.

The Tin Man's Heart Watch Day #50

Holden's cousins stopped by to visit (Actually, to raise absolute heck in the atrium at Arnold Palmer). After circling the castle for 45 minutes we somehow wrangled them together for a second to get a shot in front of the Christmas tree. That still wasn't easy though.

Family...

The Tin Man's Heart Watch Day #47

 

On Monday morning we participated in our second Radiothon for the Greater Orlando Children's Miracle Network (benefiting Arnold Palmer Hospital and Shands Hospital). It's a great way to give back. We'll have the audio/photos up when we fish it out, but always a pleasure to be involved.

Kind of a teaser. 

You can catch Holden's vignette (recorded in 2012) here.

The Tin Man's Heart Watch Day #42

I wish I grabbed more pictures of the creativity that comes with the night shift at Arnold Palmer Hospital. The Mayans would be amazed by some of these things.

The Tin Man's Heart Watch Day #41

Check out one of the video boards at Arnold Palmer Hospital! It greeted us on our way out Monday night. Of course we were completely delirious at this point and any sort of radiant light was met with squinted eyes and mere guesstimates of what was before us. So...if this is actually a picture of Nicole thumbs-upping an announcement about some sort of flu outbreak, let us know.

- Trey

The Tin Man's Heart Watch Day #40

Sometimes (meaning regularly) the nurses have to change Holden's dressing around his PICC line (think, permanent sterile IV.) Because of the aggressive, territorial behaviors that Holden exhibits with such a change, they've had to give him a little something-something to keep him calm for the 10 minute procedure. The effects don't last long, but they'll throw him on the skids for a few minutes.

See below:

The Tin Man's Heart Watch Day #39

Sometimes, you capture that perfect moment.