Tin Man Fund

I would like for you to know about my friend Elliott, also known as Tin Man.  Elliott was diagnosed with a major congenital heart defect called Hypoplastic Left Heart Syndrome before he was born in 2015.  This means he was born with only half of his heart.  In his 18 months, he has survived a high-risk birth, two open-heart surgeries, multiple heart catheterizations, hospital stays, infections, and invasive procedures. Despite all of these frightening situations, I challenge you to find a brighter smile or more infectious laugh than that of little Tin Man.

(Before  Elliott's  first open-heart surgery - August 16, 2015)

I would also like for you to know about my friends Ashley and Kelly, Elliott’s amazingly dedicated parents.  These are people who have been Elliott’s lifeline, his comforters, his providers, and his advocates.  They have moved through an impossible series of challenges with a level of grace, love, and strength that I cannot even begin to describe.  Because of his condition, their son’s life is under constant threat, and yet his eyes sparkle with all the love in the world for the life his parents have worked so hard to give him.  They advocate not only for his health, comfort, and safety, but also for his joy, engagement, and opportunity for adventure.

(Post-Norwood - August  2015)

(Post - Glenn , second open-heart surgery, February 2016)

Elliott’s basic survival will require a lifetime of additional procedures, tests, medications, an
d surgeries that will lead his parents further down an uncertain path.  The very thought of a parent losing their beloved child is unimaginable.  Ashley and Kelly work together to build a beautiful life for Elliott every day while at the same time facing the impossibly heavy emotional burden of fearing the worst, which could come regardless of their best efforts.

In addition to all of these trials, they also face insurmountable debt related to past, current, and guaranteed future medical necessities and hospital bills.  Ashley, who is pursuing her career as a librarian, must often sacrifice hours at work when faced with health scares and lengthy hospital stays, while Kelly has had to sacrifice working a full-time job in order to stay home with Elliott and provide him with the one-on-one care he requires.

Ashley and Kelly are both gifted writers and have documented Elliott’s extraordinary journey on Facebook.  I’d like to share a few excerpts from a few of their posts and invite you to read further updates by following Tin Man’s Facebook page, Tin Man Tough .

Diagnosis (written by Ashley)
"We found out about Elliott's "severe heart anomaly" only several days after finding out he was a boy. 
Hypoplastic Left Heart Syndrome was too much to remember at first. 
We had never heard of it before...
I'll never forget those words:
"Severe heart anomaly". 
Cold and stabbing.
"Why does he only have half of his heart?" 
"Will he make it to birth?" 
"Will he live after birth?"
"Will our baby live?"
We were told if we "want to abort the pregnancy, you need to do so by the end of the week". 
Repeatedly.
I asked "Why?"
She repeated herself.
"Why?"
"Severe heart anomaly."
Will our baby live?"

(Sonogram  when diagnosed , March 2015)

Surgery (written by Ashley)
"Throughout the duration of my pregnancy, I told Elliott that he better be born with dimples like his Daddy's, because I adore them. I saw one dimple right after he was born, but nothing in the days to follow. I waited to see them each day leading up to his first surgery, but no luck!
Elliott was scheduled for his first life-saving heart operation, the Norwood, at 7am on August 17th. So, we spent the whole evening before (our 2nd wedding anniversary) standing next to his bed and telling our boy about how wonderful his life would be. This is no easy task, as there were many uncertainties, but we wanted him to have some specific reasons to fight. We talked, read, and sang to him for hours and hours that night. 
I told him about the shelves upon shelves of books that we would read together and Daddy asked him important questions, like whether he would prefer a ladder or a rope to climb up into his future treehouse. When he cried we soothed him. When he dozed off we held his hand, trading places between the spot beside his bed and the rocking chair. 
Finally the time came to hold him in our arms once more before handing him over to the anesthesiologists and surgeons. 
Words cannot express the emotions.
How could someone so small survive open-heart surgery? I second guessed our decision to let them operate on our tiny baby, even though I also knew we needed to give him a fighting chance. 
Kelly had pointed out how dark and purple Elliott's tiny hands and feet were. I knew he needed it. I could see physical signs of a severe problem. But I still thought, "He's my baby. We could leave right now and he won't have to suffer through this. He's my baby. He doesn't need surgery. He's my baby." 
The lack of sleep and the overwhelming feelings of fear, uncertainty, and pure love were getting the best of me. 
I didn't want to do it. 
We couldn't.
Then my tough little boy grinned and showed me those adorable dimples. 
I am so grateful for Dr. M and the team of doctors that have helped make it possible for me to wake up to those sweet dents in my baby's cheeks every morning."

(Before Tin Man's first surgery, August 2015)

Being a Heart Mom (written by Kelly)
"There are many normal mom troubles I've seen Ashley go through. Sleepless nights (like this one) are common for mothers. Mothers worry about their babies' health and safety. Mothers sometimes have to make difficult decisions in the best interest of their children. Mothers hope their sons will have a bright future.

But there are important differences that come with being the mother of a child with a CHD. Concerns for his health and safety must be taken into account every minute of every day, because so many things could endanger his life. A difficult decision for Ashley occasionally involves allowing someone to cut into her little boy's body to save his life. A sleepless night could mean something is wrong, and if his oxygen saturation is not too low and his blood pressure is not too high, then we might as well have some fun, because who knows how many of these nights we'll get.

Plus, you know, all of the regular mom stuff too.

Being a heart mom is constant. It's making phone calls to doctors, pharmacies, medical supply companies, and insurance companies, calling again to remind them you called, again to show that you're serious, then again to let them know you're not going away until you get what you need for your baby. It's scheduling appointments and re-scheduling and making sure he gets his medicine and feeling like that's easier now because it's only four times a day instead of seven. It's worrying if you should go to work today because what if it's his last? It's handing your darling boy over to a nurse and watching them walk away to surgery, unsure whether you'll see him alive again, but staying on your feet because that's where you'll need to be if he comes back.

It's telling people you're fine even though you're not and probably never will be.

It's enjoying life even when things aren't going well. It's searching for the good side of every moment, even though the bad sides are often more apparent. It's never being either happy or sad, but always being both.

It's being strong, even when you feel defeated, when it seems all is lost. It's pushing all those feelings aside because the only thing that matters is that he needs you.

There's only one thing about being a heart mom that's easy. One thing that is never in question. She's not going to edit this, because they're both finally asleep now, and she's never told me this, but I know her heart. There may be a thousand difficulties, maybe more, but the one thing that is easy about being a heart mom is knowing that it's all worth it.

Because it's also making him laugh. It's singing with him. It's watching him learn and grow. It's hugs and kisses. It's love."
(After heart cath #1, January 2016)
(January 2017)

Being a Heart Dad (written by Ashley)
"You were with me at every appointment. 
You held me up when they told us about his heart, even though I know your brain wasn't processing it either.
You pulled the car over on our way home when I was distraught and sick with uncertainty.
You worry about our son's chances on a daily basis. Not just the chance of survival, but about the chance of missed opportunities due to a shortened life. 
Yet, you assure me over and over and over and over, not knowing yourself it will all be okay. 
After finding out about his heart, you started a (still ever-growing) collection of toys for our baby because you wanted to make sure Elliott had a chance to play with things like dinosaur figures, superheroes and Star Wars guys.
You were there for the three days of labor, eating vending-machine snacks and not sleeping while we awaited Elliott's arrival. 
You were holding my hand until he was finally born, and then you were holding his. 
You followed him to the NICU. 
You ran back and forth between the two of us for the next few days.
You watched as your baby boy was rolled back behind locked doors, into an operating room to have open-heart surgery...twice.
You have walked our boy around the house for hours at a time...some of those times you were also carrying a pulse oximeter machine attached to Elliott's toe, a feeding bag connected into his feeding tube, and an oxygen tank connected to his tiny face...all because it eased his discomfort. 
You built an epic cardboard spaceship on a whim and flew Elliott around in it for days because it made our little guy happy, which not only makes us happy, but he deserves that chance, too.
You take Elliott to your childhood comic book store on a regular basis because you want him to love it as much as you did.
You have been incredible at making sure that Elliott has as many opportunities and chances as possible. 
These seem like little things...but I guess being a Heart Dad helps you see that there are no little things, only opportunities. Opportunities to enjoy the moment, opportunities to make your child (and wife) laugh, opportunities to create memories, opportunities to enjoy this crazy life and show your son how much you love him. 
Thank you for reminding me of this everyday. 
Thank you for making us laugh. 
We see you. We love you.
Heart Dad = Superhero."
(Elliott's custom-made spaceship, December 2016)
(Best of Friends - Adventures, January 2017)

Those of us who have known this incredibly special family have often asked how we could best offer our help and support.  Because of Elliott’s fragile condition, the support typically offered to parents is not really possible.  Because of what they’ve had to do, Ashley and Kelly have become buried beneath debt, so helping them unearth themselves from that could truly change their lives.  The goal here addresses some significantly large financial burdens, but those large expenses have an impact on the even smaller daily necessities any new family faces.  That said, any support, at any level, will truly make a difference and will be met with deep and sincere gratitude.

One final thought from Ashley and Kelly:

“In the past, we have been in a position to provide care and support to others in need.  Now, as we find ourselves on the other side, we have a better understanding of how hard it is to ask for that help.  Ultimately, we want to create the best possible life for our son, which is why we are turning to our community for support. Our lives are full of seemingly impossible problems. We are dealing with them to the best of our ability so that we can do what we feel is even more important, which is enjoy the time that we have with our incredible, tough, precious Tin Man.”