A real life hero

Since Isaiah's was first hospitalized in October 2011, I have continually been amazed and grateful for all of the care and support we have received.  This support has come from close family and friends, but also acquaintances and many new "friends" I have made online whose children have also faced the challenges of having Kawasaki disease. Last summer I received an unexpected, but completely touching message from a friend of mine from university.  We had not seen each other in many years and were only in contact via the graces of Facebook, but his message was very heartwarming.

Here is what it said:

Hey Carin! 

I hope you're having a good summer. 

I wanted to run something by you. As you probably know, I recently signed up to do my first full Ironman next year at Lake Placid, NY. A lot of people ask me why I put myself through all the hours of training to complete these races and I often tell them that it's because I can when, for whatever reason, so many can't. I had a marathon coach once tell our group that each race you run should be a celebration of your life and your fitness and to never take that for granted. That message has always stuck with me. I truly feel blessed and extremely fortunate that I'm able to run these races. 

With that in mind, I'd like to do something special for my first Ironman by dedicating it to those who just aren't able to go out and swim, bike or run. I've been reading your blog about Isaiah's journey and have been really inspired by his amazing courage. I know running a 13 hour race is nothing compared to what he's been able to get through, but I would like to do the Ironman for kids like Isaiah who can't, in the hopes that one day they can. So, if it's okay with you, I would like to use my Ironman race as a way to raise awareness about KD and raise some funds for KD research and support. Let me know what you think. 

All best wishes,
Mike

Needless to say, I was extremely touched.  I had not seen or talked to my friend in so many years, but yet he wanted to do something special in Isaiah's honour to raise awareness of Kawasaki disease. How amazing.

Here is my response:

Hi Mike, 

I was so deeply touched by your message that I have to admit I was teary eyed after reading it. I have not seen you in so many years (too many!) and you have never even met Isaiah, but yet you want to dedicate your very first Ironman challenge to him (and kids like him) and help raise awareness and funds for Kawasaki disease research. That amazes me and moves me beyond words. I think I made a joke in a previous FB post that you were my hero, but now you truly are. 

I think that this would be so wonderful, but I do want to clarify that Isaiah, along with many KD survivors, is actually able to run, swim and bike. Coincidentally, those are some of the few sports that he will be able to take part in. His heart itself is still healthy and able to handle physical activity. However, because he is on blood thinners (and will likely be on them for life) he can not play any contact sports in which he may sustain any head or abdominal injuries. That being said, I am not sure if Isaiah's case is true to the meaning of your dedication. However, I am sure there are other more advanced cases in which KD survivors suffer damage to their actual heart muscles and are unable to do any extreme physical activity. I would totally understand if you decided to redirect the focus of your Ironman dedication. I really want you to be true to the message you want to convey and what is in your heart. I am honoured and grateful that you even thought of Isaiah and KD. 

Another coincidence that I thought might be worth mentioning is that Isaiah's cardiologist also did an Ironman a few years ago to raise funds for KD research. It seems to be a good fit, as these kids are facing their own challenges -- their own Ironman if you will, and it is also important for them to get lots of exercise to keep their hearts healthy, as it will play a huge role in their health when they become adults. 

Thanks again for thinking of Isaiah. Regardless of what you decide, I will always remember this touching gesture. We will be rooting for you no matter what. 

BTW, do you mind if I use your message as part of a future blog post? I think it would make an inspiring post. 

I hope you are enjoying the summer and really hope to see you soon. 

Take care,
Carin

 Mike decided that he still wanted to dedicate his race to Isaiah and KD:

That's awesome that Isaiah can swim, bike, and run! I must have misread your blog post. I thought all sports were out for him. Maybe one day he can do a 'kids of steel' race -- Simon Whitfield started out doing these when he was a kid! 

I'm still more than happy to do this race for Isaiah and other kids with KD. I think there are a whole host of messages that I want to convey that mesh quite well with this cause. Beyond doing this race for those who can't, I'm hoping that I can inspire others to get active and celebrate their health. And, if this inspires survivors of KD to get into triathlons who need to stay 'heart healthy', then even better! And, while I would never dare compare a triathlon to fighting a disease, both require a tremendous amount of courage and toughness to get through. Most of all, you need a strong heart - both figuratively and literally - to keep going!

Mike is absolutely right.  All of the KD kids I know and read about are all strong and very brave.

I always say that Isaiah is my hero, but my friend Mike is a very close second.  I am truly touched by his gesture and also by his dedication.  From what I understand, preparing for an Ironman race is a complete lifestyle change.  It requires an insane amount of training and preparation, both physically and mentally. I find this type of dedication very inspiring.  I am sure that when Isaiah is older he will be inspired too and hopefully be motivated to stay active and maybe take on a similar challenge.

Thank you, Mike. You are a true inspiration, both as an athlete and a human being.  I will be forever thankful to you for bringing awareness to Kawasaki disease and dedicating your efforts to my little guy.  Good luck with your training. We will be cheering for you.

Mike in action at the Ironman 70.3 Pocono Mountains race last year.

[Just a note: Looking back at my message to Mike, I realize that I had made an error.  Isaiah does in fact have damage to his heart muscles.  His recent MRI has confirmed what the doctors had assumed based on his cardiac cath last April: approximately 10% to 20% of his heart muscle has been damaged.  I won't get into the details here (that's for another post) but thankfully, his overall heart function is still good so he can still do his running and jumping.  I am not sure if a "kids of steel" race is in his future or even authorized by his cardiology team, but at least he can still catch his friends at tag, shoot a basketball like it's nobody's business and kick my sorry butt at Kinect tennis.]