Why Ironman?

 

 

 

 

 

Anything is possible!  

Why Ironman? That was a question I couldn’t answer when I started this journey. Was it self indulgent? Do I just want to cross another thing off my bucket list? If I’m honest with myself the short answer is a little of both but that alone wasn’t motivating me. As I look back at when I started doing endurance events, like triathlons, regularly it was about that time our twin sons were born. I started this path to Ironman then and for very different reasons I just didn’t know

it back then. I was an average age group competitor and I really just enjoyed doing shorter events. Then life changed drastically in July of 2013. As any couple can attest to nothing changes more in life then when you have children. We didn’t know how true that really would be. However our new life with children was a little different than most. We were told our beautiful son Madden had a rare genetic disorder called Angelman Syndrome. It was devastating and my wife and I really didn’t know what it meant. All we knew is that we had this cute little boy that looked and acted much like his twin brother Declan but now we’re being told he will grow up and develop very differently. Every day that went by the developmental divide between our twin boys would only grow. Angelman Syndrome greatly effects a child’s abilit

y to develop normally and he will ultimately need help doing the many things typical children take for granted. Life with a special needs child was impossible to envision and for new parents probably too much to even try. We wanted to focus on today and our twin baby boys that were perfect in almost every way.

My Ironman journey started on a fall day in 2013 sitting in a chair at local healthcare facility being told by our genetic specialist that Madden has this rare genetic disorder called Angelman Syndrome. As I finished asking my final questions with the specialist trying to digest the information I found myself feeling strange. I was sad of course but also a little numb. I’m sure I didn’t understand the impact and I don’t think I knew what to be upset about anyways. When given information like this it’s one of life’s moments that changes somebody forever. Our future would forever look different and be atypical in every way. Something also changed inside me. I wasn’t conscious of whatever this change was but I know as I look back that was the moment and it was significant. My goals changed, my determination and how I looked at things chan

ged. Being powerless in a situation like this is terribly difficult. It forced my wife and I to look for something that we could do. Like any parent there is nothing more important than protecting your children. Someone just told us that our son is destined to have significant health issues. We did what any parent would do. We looked to fight it. To find something we can do to change this diagnosis.

When humans are faced with critical moments in their life we are wired to have a fight or flight reaction. With one phone call our life and our future changed. We had a choice and our primal instincts kicked in to fight with everything thing we had. So I mustered up the courage, collected my thoughts and called my wife to explain what I’ve been told the best way I can.

We took some time to morn the loss of what we thought our child’s future would look like. In many ways I think most parents follow an outline for their children and don’t deviate too much. There are always detours in life that take you in a different direction but when you realize you’ve been looking at the wrong map it’s a lot to handle. We discussed in length what this new life and journey will look like but in reality we didn’t know and every family with a special needs child has a very unique journey. No two look the same. What we learned the hard way is that mourning the loss of what a typical future for Madden might be is a waste of time. He’s happy as can be and he knows his future is bright. It will look very different from most but great all the same. Variety is the spice of life. It’s us that have some preconceived plan for him that we’re sad about losing. It’s silly. It’s Madden’s life and he’s making the best of it. Probably happier than most 4 year olds. We admit this took time to figure out.

I’m so lucky to have a beautiful and supportive wife who in many ways balances me out. I like to think I balance her out too. We talk about it often. Opposites attract and that holds true for us. We compliment each other really well. I root for her and her for me. We’re a great team and our family always comes first in the busy hectic life we live. I admit I have a type A personality and being told that I have lost some control of my young family doesn’t sit well. My son will always need assistance. His entire life. He might not walk and he almost certainly won’t talk. At least that’s what we read and were told by physicians. To their defense that’s what the medical literature says. Well, it took us some time but we decided that’s crap and we will rewrite what’s possible for Madden. It’s only true if we let it be and don’t do anything about it. That’s not our style and we’re ready to fight for him.

I work in the medical field and my company does a lot of clinical trials. Those expensive clinical trials generally start with something called a “proof of concept” study. It’s a far less expensive study that shows the premise of the larger more expensive study is possible. If “proof of concept” can’t be done then there is no reason to move forward with the more expensive larg

er clinical trial. I bring this up because I don’t think there is a better analogy to explain why I do these events. For me it’s life’s “proof of concept.” Every time I do something that I never thought was possible it turns what I thought couldn’t be into something that is. A “No” becomes a “Yes” and impossible becomes possible. But the next milestone isn’t possible without completing the event before that one. It’s a very slow progression and over time if I just continue to train and focus on my goal then I might wake up one day and I’ve hit a new milestone. Maybe it’s Ironman maybe something else. It’s not a destination it’s a journey full of setbacks and opportunities to quit. Why continue when it’s easier to just take what life gave me. That allows me to avoid the setbacks, challenges, and failures. In the face of something I called out as impossible anyways? Why even try? Because every time I overcome some challenge or setback to find a new milestone I’m one step closer to something I’ve never done and my wife and I are committed to showing our kids how to achieve more. It’s more important then ever to be an advocate for doing more than what we perceive the limitations are.

As a father I want something to point at and say yes you can. This proves you can. In the crazy life we live I need every resource I have to say “yes you can.” There are too many things telling us that you can’t. A little “yes you can” will go a long way. We will continue to try and a setback will only remind us to double down on our efforts and be more determined. Madden and I will fight Angelman together. We will take everything positive from it and fight everything else that isn’t. As a family we will hit new milestones together and change the spectrum of what’s possible. That’s an expensive proposition of time and effort. The “proof of concept” is critical for us and reminds us that anything is possible. We have Proof.

This is why I do it. If I can do an Ironman and continue to pursue more then it’s a “proof of concept” that Madden can do the same. My entire family can do the same. I am one of those very average triathletes that said a long time ago I would never go as far as an Ironman. It’s not possible, I’m not built like that and I’m not capable. Who has time to train not to mention my body would never allow me to swim 2.4 miles, bike 114 miles and then run an entire marathon in 12 hours. That wasn’t me. Never will be.

The fire was lit 4 years ago sitting in that chair and unknowingly it’s been slowly burning. It’s probably fueled by my crazy personality and unbelievable supportive family. My wife and I decided a long time ago we wouldn’t sit back and just let Angelman Syndrome do what it always does to beautiful children trying to develop into wonderful healthy adults. No, we will have to fight for it. One thing at a time and building on the milestone prior. Until one day we wake up and Madden is communicating with us. He’s running with me and he’s in school with his brothers. The Cure to Angelman Syndrome can mean many things. For my family a Cure for Madden is health and happiness. Facing the challenge of Angelman and making it a positive force on my family. I hope one day there is a clinical cure but until then we will fight to prove the experts wrong and do things we didn’t think were possible.

Every time I cross that finish line it’s reinforcing the “Proof of Concept.” It reminds me that hell yes we can do something about Angleman Syndrome. We’re not helpless. Angelman gives us so much if we just realize how to take advantage of it. My son is still crawling at 4 years old but he took his first steps on his own a couple months ago. Like my first 5K that I thought would never end Maddens first steps were so damn hard for him. I can relate, that first 5K was a near death experience for me. If you asked me on that hot day if I would ever do an Ironman I would have laughed at the notion. If you’re lucky enough to see the video we took of Madden taking those amazing first 6 steps before falling back to earth you would know that anything is possible. The difference is if Madden could tell us he would laugh at the notion that he’ll never walk, not be able to communicate and go to the same school as his brothers. The determination in his eyes make those limitations laughable. In this “Proof of Concept” Madden’s first 6 steps is like my first 5K. Then what is an Ironman equal to? Anything is possible…

One thought on “Why Ironman?

  1. My overwhelming pride of Madden, Kyle, Shawna, their family humbles me. Kyle and Shawna work endlessly for “Angelman Awareness” and fund raising to unlock the cure.

    SUMMIT4ANGELMAN.COM

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