Marathon: For My Health & For Her Life

Many of you know I’ve challenged myself to participate in the Hartford Half Marathon on October 10 this year.  I decided this after my 8th heart procedure, a thus far successful cardiac ablation of a recurrent atrial fibulation and tachycardia, both of which I am hypersensitive to.  This A-Fib and A-Tach are both just co-morbid symptoms of a larger heart condition I live with, hypertrophic cardiomyopathy, that I was diagnosed with back in 1993, the same heart condition that killed my Mother at age 42, and her father at age 48, essentially without warning.

Notice I say I live with cardiomyopathy – it is not killing me.  Research, medications, and treatments have come a long way in the 25 years since my Mother’s death.  The awareness of my condition makes all the difference as well.  I also consciously decided I wanted to be here for my children, and knew to do that, I needed to lose weight.  In the last few years, I have lost a current total of 110 pounds, just 22 pounds shy of my goal weight.  This was certainly not an easy feat, but most definitely a life altering and worthwhile endeavor to undertake.  The pursuit of health usually is…no matter the cost.

Which brings me to my next revelation – we can never, ever take our health, and the health of our loved ones from granted.  Even the most physically fit individual cannot predict when or if something unprecedented will happen to them.  Life is unpredictable.  Only God knows the future, every breath we will take, every decision we will make.

So as I am preparing for this marathon, this ultimate challenge of my stamina and strength, it occurred to me that this is the perfect platform for more than just my personal victory.  This is the excellent opportunity to bring light to just how fortunate we are – the healthy – those whose families are whole.  And while my family, my children have their struggles, no one is fighting for their life each day.

I have this friend, Emily, who I had the fortune to meet through her work with autism.  She does not have first-hand experience with autism other than her education and work – she is a Behavior Analyst by trade, and a mother by the grace of God.  We met through volunteerism, which was an incredible gift to us both, and as Heaven would see fit, the night before the main event, she gave birth to her second child, Kiley – the most precious fair-skinned, red-haired beauty this side of Ireland.  Thanks to a last minute substitution by her mother, our event went off unscathed, and Kiley grew into a spunky sprite…until just prior to her 5th birthday, when an unusual limp and accompanying symptoms prompted Emily to bring her into CT Children’s Hospital.  The diagnosis, just days after her landmark birthday – Stage 4 Alveolar Rhabdomyosarcoma, an aggressive cancer of the soft connective that impacts only about 350 children in the US per year.

For the past 18 months, Kiley has been fighting to beat this cancer with warrior strength.  She’s undergone an extensive regime of radiation and chemotherapy all in an effort to “kick cancer’s butt!”  Kiley held her own fundraiser earlier this year and raised enough money for an incredible machine housed in the Children’s Cancer Therapy Development Institute in Ft. Collins, Colorado.  There Dr. Charles Keller, scientific director, works tirelessly to research therapies for childhood cancers, including ARMS, Kiley’s type of cancer.

Working to find why the cancer cells metastasize, or develop in new locations in the body, is paramount in advancing the outcome for kids like Kiley.  But all this research takes funding.  Currently the National Cancer Institute only allots 4% of funds raised for pediatric cancer research – 4%.  This is woefully inadequate, for Kiley, for other children like her, for anyone.

That is why I have decided to challenge you, my friends, to partner with me as I participate in this Marathon.  I KNOW how fortunate I am – every day I can walk and breathe is a gift from God.  My children – their health and well-being – yet another gift.  Our safety in a country that is free from violence; gift. Freedom to worship the god we choose (or not); gift.  A roof over our heads; gift.  Food, clothing; gift, gift.  I could go on and on, but I think you get my point.

So, add up you gifts right now – just a simple list – and think about how thankful you are for what you have.  Think about that 4% and how much more your children are worth to you.  Think about anyone you know who’s been touched by cancer, anyone at all.  Think of anyone you’ve lost – the pain, the grief…now imagine burying your small child.  What might you give to avoid that unimaginable agony?

I’ve started a donation fund in honor of #TeamKiley , where 100% of your donations will go directly to the cc-TDI lab in Colorado and directly benefit Dr. Keller’s work.  I believe in the power of prayer.  I also believe God is still in the business of miracles, even today.  Kiley has lost several friends in the 18 months since her diagnosis – this disease is very real and very deadly – children who will never graduate high school, enjoy their 1st real kiss, attend college, walk down the aisle with their lover, and blossom into their parents hopes and dreams.

There are 30 days left until the Marathon.  30 days to make a difference in the life of a Warrior Princess.  Look at this child:

Kiley1 Kiley as Anna Kiley n Kelly Kiley pre C Kiley 2

4% is insulting for this beautiful child – for any child.  Let’s send a message to the NCI – our children are worth 1000% – and if you are incapable, we’ll just show you how it’s done! Heck, I’ll walk to whole 26.2 miles if I have to until my voice is heard – you’re my people…you know I will do it!

Please, please tally your ‘gifts’ and make a donation today.  I’ve set a moderate goal for us to attain, but I have faith we’ll blow that right out of the water.  Thanking you all in advance!

Here’s the link:


“I Will Not Give What Costs Me Nothing”

‘But the king replied to Araunah, “No, I insist on paying you for it. I will not sacrifice to the Lord my God burnt offerings that cost me nothing.” So David bought the threshing floor and the oxen and paid fifty shekels of silver for them.’                        -2 Samuel 24:24

This has been an absolutely fantastic week for me.  Starting last Saturday I spent the better part of my day donating time to a Back to School event my church sponsored, partnering with a local Elementary school in need.  We as a group were able to provide backpacks & supplies, games, activities, lunch, and a tiny piece of Jesus – all in the 90+ degree temperatures that soared throughout the day.  I had done a table offering special education advocacy, and though I’ve been away from public advocacy for several years now, it felt just like home to offer up my gifts to those who might be in need.  Even though it was ridiculously hot and the work was long, I left there feeling blessed and rejuvenated.

By Monday a wild idea began to circle through my brain.  I’ve been feeling really good, both physically and mentally lately.  I thought it might be time to raise the stakes and take on a new physical task, if my doctor approved, of course.  As luck would have it, I had an appointment that very day, and my check-up came back as glowing as I felt.  I asked permission to participate in the Hartford Marathon coming up in October, deciding that I just might be able to complete walking the Half Marathon in the allotted time.  Of course, I’m not looking to win any medals – I simply want to challenge myself to do more than I’ve done before.  I’d basically been walking a 5K every other day as it was, so this seemed like the next logical step.

Looking back over the last few years, I’ve lost 110 pounds and had 8 heart procedures.  The fact that I can walk at all and still breathe should bring God glory…and that’s my job.  My mother dropped dead with no warning of this same heart disease I have, 4 years younger than I am now.  My father struggled for every single gasp of breath as he died almost 4 years ago.  I know countless people who are obese and can barely move, who have COPD and can barely breathe; while I can, you better believe I am going to move.

So Monday night I hit the track, not exactly sure what my plan was.  I just knew I needed to get moving, farther and faster than I had been.  The race is 13.1 miles…my current average was 3.  Monday night I walked 6 miles, and I didn’t die.  Tuesday I woke up, not dead, and went back to the track, where I walked another 6 miles, this time faster.  I was breathing, I was singing, I was talking and I was laughing (maybe a little too much…some of those young chippies started to stare!)

Wednesday I took the night off, got dressed up and went out to laugh with a friend – a great night.

Thursday I pushed myself back to the track.  It was a little harder to get going, but once I was underway, I walked 7.5 miles.

As you can imagine, as I’m walking I have plenty of time to think – about all kinds of things.  I think about this decision I’ve made to try this Marathon.  I like saying the word ‘Marathon’ in conjunction with my name.  I am no athlete.  I was the little smart fat girl growing up.  Heck, that’s who I’ve been most of my life.  I’ve watched from the sidelines at my kids sporting events: soccer, football, basketball, baseball – mostly in amazement at the way they and the other athletes can move their bodies through space.

Several years ago I started taking karate with the kids, first in their ‘kid’ class with them, and then joining the ‘adult’ class, but even then I certainly was not athletic.  I could never find my center of gravity, my balance is awful, and my learning style is multifaceted, so merely watch-then-do does not work for me – I am currently a purple belt as my classmates have far surpassed my level long ago.

But like this Marathon, and much like my life, no one else runs MY race besides me.  I was given all the tools I ever needed to complete MY race.  Some days MY race will be slow, more of a shuffling pace, and I may not cover much ground.  Other days, MY race will look more like a sprint, and all you will see of me is a blur of curly red hair flailing in the wind.  I’ve learned with time and experience that I cannot phone it in.  Though my talents look different than others, that in no way diminishes my responsibility to use them.

That brings me to the title of this piece.  In May I was visiting my family in South Carolina, and heard a lyric from a song in church that resonated with me.  Tracking it down, I find it’s from Desperation Band’s latest album, a song called ‘Break Open.’  In the song, they’re speaking of offering empty sacrifices to God.  He knows what He’s gifted us with, and He knows what our best looks like – in all things.  He doesn’t ask for sacrifice because He needs it – He asks for sacrifice for obedience sake.  If we’re only willing to give God what we have left over, that’s a direct slap in the face to our Creator.  He wants our best, our first, our everything.

As I do my laps on the track, lost in my countless thoughts, calculating how many of the 13 miles I might actually complete in the 3 hours allotted before the medical support dissipates, I start to contemplate what my best effort would look like, instead of simply enough.  I realize I’ve been looking at this whole thing all wrong.  If I focus on doing my best, giving my best, and asking for strength to turn in my best, that is exactly what I will do.  Nowhere are we promised that getting there will be easy.  Anything worth having – better relationships, better health, lasting values – always costs us something.  If we are not willing to sacrifice, the ‘prize’ most likely is short-term.  I’m so much more into hitching my wagon onto things that are made to last.

I can’t wait to see what training next week brings…