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:


Let Freedom Ring

“Don’t be afraid of what you are about to suffer.  The devil will throw some of you into prison to test you.  You will suffer for ten days.  But if you remain faithful even when facing death, I will give you a crown of life.”                                                                                                                                                                     Revelation 2:10

Even after living in Connecticut for 24 years, I still consider Charleston home.  My roots, my heart, my soul are all stored deep in the south – I don’t believe that will ever change.  The news of the Emanuel AME Church shooting Wednesday evening rang through me like a shockwave.  Someone, an intruder, had violated MY HOME…killed MY PEOPLE…damaged MY TOWN…it feels just that personal to me.

I scour social media to get the latest on the offender, his whereabouts, input from President Obama, outcries from the families, reactions from the community – but I know one thing I don’t have to ready myself for – more violence in retaliation.  That is not how MY HOME works.  I love the response of my people…banding together in churches and sports fields, to PRAY.  These people have been through this experience and worse before, and they know who to turn their troubles to, and who not to blame.

Being raised in this community, the difference of race was out in the open, always.  My Mother’s best friend was African American, half of my classmates were African American – heck, the first boy who ever loved me was African American…it was there, and you were either going to deal with it, or you were going to be the problem.  Sure, ignorance existed back then too, but we kids didn’t tolerate it, at least my group of friends did not.  If someone had the gall to actually say something ignorant out loud, they got stared down mighty quickly by about 10 people more than ready to ‘bring them to Jesus,’ and then they were allowed the grace to retrieve their dignity and simply move on.

I understand I can be fairly naïve about many things, though I am not naïve enough to believe my experience was the sum total of race relations in South Carolina, with its Confederate Flag whipping in the wind and the good ole boys making deals in back wood bar rooms.  But these references, as I’ve heard mention, as well as a few others in the last few days, are not the origin of racism, of the hatred displayed Wednesday night.  This story, unfortunately, is not new.  And as the pieces of the puzzle still unfold and we hear from the offender himself, a variety of conclusions can be drawn.  One point is transparent:  this young man messed with the wrong town, the wrong people – the evidence is clear.  His repayment for such unthinkable acts?  Riots, looting, burning my precious city down?  Quite the contrary…prayer, worship gatherings, vigils…inviting Jesus right back to where He was forced out by gunpoint.

I worship a God worth dying for.  I have that right because men and women have given their lives for me to serve this country I call home.  They gave their lives for Dylann Roof without him ever asking or approving as well.  I read an amazing quote last week that I really loved…basically it said Jesus died for you knowing that you might never love Him back.  Jesus died for Dylann Roof, knowing he might never love Him back…he was worth the risk.  Jesus certainly died for Clementa Pinckney, Cynthia Hurd, Sharonda Coleman-Singleton, Tywanza Sanders, Ethel Lance, Susie Jackson, Depayne Middleton Doctor, Daniel Simmons and Myra Thompson, and though they may have feared what stood before them Wednesday night, they had the promise of eternity with God ahead of them and freedom from this broken world, and we must try to focus on that positive picture.

Please continue to lift up Charleston in your prayers – for healing and wholeness, and continuing to let God reign.

The Truth Will Set You Free…Or Will It?

“The truth may hurt for a little while but a lie hurts forever.”

I have always prided myself on my honesty.  Not in an “I’m better than you!” kind of way, but mostly in an admirable quality way.  I will always tell you the truth, even if it leads to trouble – certainly not my intent, but in my attempt to be transparent, the line between ‘brutal honesty’ and ‘loving kindness’ sometimes becomes blurred.  I often tell too much, as has been mentioned to me before, again, under the guise of transparency, rather than misrepresenting myself in any way.

I’m not exactly sure where this strong belief in truth came from.  I know as a young child I struggled with lying.  I remember my mother and her disappointment regarding this very issue.  I also recall the secrets that were necessary that I keep – secrets that no child should be required to keep.  I do remember vividly my resolve that once that ugly revelation met the light of day, I declared mostly to myself that never again would I ‘hide things’ from people.

I also find it more than ironic how we convince ourselves that we’re not really lying by giving little pet names to the acts we commit – white lies, fibs, stories, half-truths, omissions of information – the more glorious the name, the less guilt we associate with the actual act.  But the bottom line remains the same; any time we answer a question with less that the facts, we are in essence, lying…nothing glamourous about that.

For the past 2 years, this very premise of mine has faced some strong adversity that has challenged myself and my faith to its very core.  And while I cannot yet quite share the full extent of what I am referring, suffice it to say that the very moral fiber on which I stand has been called into question throughout this entire timeframe.  At each bend in the road, I have stood firm, opting to choose truth over the perhaps easier path of least resistance, all the while wrestling with my logical brain as to why it was this way.  Why in essence was truth the ‘loser’ in this battle at all?  It would seem only right that opting for truth would lead to freedom on several fronts, not the least of which included in the world’s eye.

I think this has been the most difficult lesson of all – that the world, who at large never ceases to disappoint me, falls short on my expectations of holding up a measurable bar at all for values.  That in the choice of truth over covering your butt, hands down, covering your butt wins every time!  Even more, the fact that this shocks me has been the source of ridicule as well.  That a grown woman in 2015 has the audacity to stand for anything, let alone the truth, and walk out the courage of her convictions – well, apparently it’s simply unheard of…until now.

Now is when you’re going to want to scoot up in your seat…it’s getting good.  I don’t give a hill of beans what this world thinks of lying, covering your butt to stay out of trouble, saying the popular thing, looking the part, taking the easy way out…whatever.  Bring it on!  First, I don’t scare easy – my God is bigger than anything you could throw at me.  Second, I am raising 3 teenagers, essentially alone in this messed up world.  They are watching every move I make.  If I cannot be their good Christian example, who the heck will be?  Lastly, you know that saying, “If you don’t stand for something, you’ll fall for anything”?  I do stand for something…I stand for good values.  I don’t care how rare they are.  I don’t care how old-fashioned I’m called.  I don’t care if I’m ridiculed.  I don’t care if this crazy world doesn’t understand me.  I know who I am – I know where I’m headed – I know where I’ve been – I know the truth…and with God by my side…I AM FREE!

John 8:32

32 Then you will know the truth, and the truth will set you free.”

Warrior Mamas – Heroes

It takes an incredibly special breed of mother to raise a child who is differently-abled, who comes to you not quite fitting the mold of those who came before, whether they came to you through 9 agonizing months of worry and weight gain, or a trip halfway around the globe.  Those of us who share the privilege of raising these princes and princesses with autism, a neurodevelopmental disorder that impairs a child’s ability to communicate verbally and non-verbally, interact socially with others, and  causes repetitive behaviors, have been given the term ‘Warrior Mamas” due in some small part to our incredible strength and never-quit tenacity.

I’ve had the great fortune to grow and know many Warriors here, as we’ve shared our journeys together – through tears of triumph and tribulation.  The sleepless night, the raging hormones, the School Board battles, the medication changes, the intimidating IEPs, the State Capital rallies for tax funding, insurance legislation and appropriate housing for young adults – we are a tireless bunch who won’t hesitate to raise our voices when our children are in need, but remain silent when the spotlight is looking for a soliloquy.  We take up our cause at least annually at our favorite walk, race, Puzzlethon™, fashion or art show, or auction – all in the name of research and support for this disorder that families deal with each and every day.  And while each of us hopes for a cure someday, we know in our hearts the time for that cure has passed for our children – the battle has shifted to better long-term care, more planning for adults with autism – the future they face is staggering.

One blessed woman I am lucky to call friend, Judith, ran the Boston Marathon yesterday, as she’s done in many years past.  The weather, as those from this area know, was atrocious – cold, windy, non-stop rainy the entire 26.2 miles.  Each year she runs for her son, soon to be a teen, on the spectrum.  She adorns her tiny body with the names of each and every student from her son’s school – the most perfect of placements for him to flourish and be all that he can be.  She begins her training months in advance, as do most of the seasoned marathon participants, running in the steeply stacked snow banked winter months, building her endurance in preparation for the big race.

The amazing thing about Judith, in addition to being a Warrior Mama (as if that weren’t already enough!) is she works tirelessly for Autism Speaks, an exceptional organization, where she is helping to promote insurance coverage to states where coverage for autism services, such as occupational therapy, Applied Behavioral Analysis (ABA), speech and language services and the like, are not currently mandated coverage for children.  She travels across the United States all week long, as those who follow her on Facebook are lucky enough to keep up with her current travels, and still manages to find time for her family, her faith and giving back.

As I watched Judith prepare for this race the last few weeks, she really humbled me in a new way.  First, the sheer determination she possesses in that tiny body just blows my mind!  Second, as a nation, we all know what happened 2 years ago near the conclusion of the Boston Marathon.  Judith was present – shaken but unharmed.  Her family was on-hand, as they always are, awaiting her arrival, and as you can imagine the pandemonium…as an observer on television, I was gripped with fear for those I knew were near.  As many who stepped out in true humane style, Judith was taken in by someone on the route, fed and warmed up, and helped to contact her family…an act that still gives me chills today.  I long for a time when we as a country can stay still in that moment…and just be.  We know how to be wonderful to each other – we just can’t capture it for long.  To Judith, and all the others – especially those who were wounded during that awful event – that had the courage of their convictions to return once again; to not let evil win…I am in awe.  You are what I want my life to be about.

Lastly, for as many more years as Judith sees fit to run this race, she has left behind a legacy for her son that he can be so very proud of.  She has left her mark on this world in his name, and that is why I would dare call her ‘Hero.’  Judith…no more, no less…YOU ROCK, GIRL!!

To all my fellow Warrior Mamas: Please smile and take a silent bow!  I know you hate the attention, but from one WM to another, some days we need all the kudos we can get!

Dedicated to: (in no particular order…I love you all!)  Judith U., Beth K., Shannon K., Kristen B., Noreen S., Diana Y., Donna C., Beth L., Vicki P., Kim S., Darlene B., Onika B., Jennifer W., Annie C., Micaela O., Dianne M.

Asking the Wizard for Courage

I have said this before and I’ll say it again…a good piece of music moves me deep in my soul!  I don’t know if it’s my Southern roots or my Christian upbringing, but regardless of where it came from, I value the treasures I find in a song that rocks me to my core.

I love to listen to a song for many reasons:  for its bone-shaking rhythm, its heart-rattling lyrics, its soul-moving chorus, its stop-you-in-your-tracks melody.  I love just about every kind of music, and I don’t care where I am – church, the car, the mall, wherever – I let that melody unashamedly work me…and yes, I dance like no one is watching, and often!

Many times I don’t absorb the true meaning of a song the first or even the second time through.  Who does really?  We hear something, we know we like it, we jam, and that’s good enough for us.  Other times a song strikes me immediately, with words that draw me immediately in to the artist’s meaning, as if I were right there, during their heartache and loss, their jubilation during their experience, each powerful step of the creative process.

Today I was listening to some of my recent favorite tunes as I worked on laundry, and I found a song I’ve listened to several times before, but until today, apparently never really heard.   Because if I had heard it before today, I would have immediately known it was my ‘swan song’ – the epitome of where I’ve come from 2 years ago.  Listen…

I would have followed ‘him’ anywhere.  I loved him, and I would have stayed forever, had he not told me we were done.  Unfortunately he didn’t have the courage to finish what he started, or even have that conversation.  And that is where my need for courage came in.  Realizing I could stand up, step up, walk away – because he would not.  This song – so powerful – so perfect.  Looking back…while so difficult, is so liberating.  I would have stayed…forever.  But I didn’t.

I won’t speak to his current status, but me – I am so much to the better for that giant step of courage.  And I haven’t stopped dancing since…