Advocacy

 Very early this morning, before coffee #2, even, I was asked a question that stopped me in my tracks. For those of you who REALLY know me, yes, this CAN happen. I do not believe it was a malicious question, but not very thoughtful. I was asked why I was still “so involved” in childhood cancer, and I quote “since Clinton was already gone”.

I promise, dude.

I promise, dude.

 I’m sure I stunned this person when without hesitation I asked “have you ever had a 6 year old look you in the eye and ask you to promise him that you would “help his friends just be like normal kids”? A 6 yr old who chose happiness, laughter, random acts of kindness – and planned for his future every single day, even though he knew his body was betraying him? I know highly educated and well-traveled adults who fail to “get” this.

  Since this encounter, I have gone on with my day – but have experienced every range of human emotion. My best answers are:
~I advocate because it’s the right thing to do.
~I advocate because my peers are not doing enough and I am ashamed of us.
~I advocate, with no compensation, because decision makers find it hard to take grieving parents seriously, most physicians are doing the best they can with the tools they have,  and I can provide an “as close” as possible 3rd party assessment of the truth from all sides. Collectively,  we are failing these families.
~I advocate because I believe true judgement will come from things I could have done, but chose not to – or found an excuse not to do.
~I advocate because I hate – hate – hate to lose.
~I advocate because I have children, and you have children, and someday – far far from now, I will have grandchildren.
~I advocate because I love Keeton, Alyssa, Nick, Leah, Sadie, Ireland, Bishop, Emily, JoJo,Casey, Mark Kelly and so many more.
~I advocate because there is not an hour of each day that I do not think of Clinton, JC, AJ, Noah, Savannah, Tay, Talia, Jessie, Ronan – and so many more in addition to the 7 children who will die today.
~I advocate for all the children who are healthy today – but tomorrow could be catapulted into toxins being pumped into their bodies, yet they never smoked, sun-tanned, fought a war – or even worked in a place that had carcinogenic chemicals.
~I advocate because I know what is over my head, is under God’s feet.

Until you have experienced something like the photo below, you may never understand. I pray you never do.

Where there is the slightest chance at life, there is Hope.

Where there is the slightest chance at life, there is Hope.

 I will be at the next Childhood Cancer Caucus in Washington, DC -and rumor has it – that as the baby of the family – I will be heard, and will stomp my feet if I do not get my way. My tantrums are ugly.

So – please, do not ever ask me this question – ever again.

If you would like to visit foundation websites I love and that make a difference – every single day,  visit:

www.clintonsclub.org

www.live4tay.com

www.negu.org

www.peachsneetfeet.com

www.alexslemonade.org

www.stbaldricks.org

www.rockstarronan.com

* Note: these are my personal thoughts and not meant to be the reflection, mission or endorsement from any of the above foundations. -LLW

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Inequality in America

 
GO GOLD

 GOLD

    Many Cancer fighting families and the Physicians who treat them – think that last year our Nation spent $122 million,  let’s say – on the research of one Pediatric (kids) cancer, specifically, Non-Hodgkin’s Lymphoma, and $631 million on just one adult cancer (breast), because kids are not old enough to vote and therefore politicians do not have to answer to kids. I personally have heard these words spoken on too many occasions over the last 3 years. This is complete rubbish. The cancer kid’s parents vote. Their older-than-18 extended families and biggest cheerleaders – vote. But we have a history of asking politicians the wrong questions. What IS on their platform? I made a promise to a cheeky 7 year old, from that day forward – I would know these things, and whether or not my representatives, congressional members and/or anyone I vote for ever – has childhood cancer research on their platform. If it is not even on their radar, they are not on mine. To be on mine they will need to so some research and see what we can do to right this injustice. No, I do not mean lip service. I like written plans. I’ll need to see those too before you get my vote.

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The King

 I challenge local, state and federal legislators to discover why “everyone” says it is big Pharma’s fault that there has only been one new pediatric drug released in over 20 years on the market. “Everyone” says that big Pharma does not develop/manufacture new drugs for kids because they will not make money off pediatric drugs. WRONG! First, drug companies have very savvy business and marketing development leaders – and second – this subsection of consumers has 46 new customers every single day. The parents of these kids and those who love them most (and even complete strangers) will find the funds necessary to treat/cure-  if the drugs that were needed – were out there. We’ve raised hundreds of thousands of dollars for local kids to get to watered down adult treatment centers across the nation – and sometimes out of the country – because it’s the best option we have. Last – the drug companies are already making money off kids with cancer, but they are not earning a good reputation when their drugs are watered down to a kid dose – have horrific side effects and the kid still dies.  I have spoken directly to – and have had incredible conversations with the leaders in “big Pharma”. They have so many amazing potential kid-friendly drugs on the cusp – but they have difficulty getting governmental approval relating to the research/outcome protocols for Pediatric drugs. Now why would our government do that? Because they only want to fund/grant programs that have good outcomes – and they are doing a bang-up job with that across the board aren’t they? The governmental guidelines are too stringent and they only chose the studies with a very high chance of a great outcome (read propaganda garbage). The only drugs to survive this review are made for adults. It’s just not the American way – to take the easy road.  It doesn’t make me feel better about  myself and our government at the end of the day – and it shouldn’t you either.

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Follow us to the clubhouse. Where cancer kids can be “normal” kids, even for just a few hours.

 I have worked for over two decades in healthcare and I have a special place in my heart for women’s healthcare. My true passion has always been in this field and I have been blown away by the advances. 21 years ago (and even more recent than that) – a breast cancer diagnosis delivered was almost a death sentence. Today, many women work throughout their entire treatment plan without missing much time from work. Am I angry about that? NO. Please do not misunderstand the semantics of my words. I rejoice in the news that yet another woman has beat this monster. I have two very good friends who have breast cancer right now – and whom I love dearly. I have spoken to both of them on this very subject. They themselves – cannot believe the  treatment options they have compared to the non-existing options for children. I do not want the pink ribbon to go away (unless we abolish breast cancer) – but it should not be that hard to equally see the GOLD ribbon about. Pink is big in October, and every other month.  Awareness works – and the pink ribbon campaign has proven this. GOLD needs to work just the same. September is THEIR month. Let’s see some GOLD. Own a business? Cover it in GOLD this September. Allow Clinton’s Club (www.clintonsclub.org) to place an awareness poster in your storefront – or host an event. You do not need money to do this. Donate your social media presence – even an hour a day can make a big difference. Think you can’t make a difference because you have no money? Wrong. Go to Google, select Google images. In the Search bar type “Clinton’s club”. As of this morning, the first 5 images you will find are either sweet Clinton himself – or a highly viewed photo tagged to Clinton.  I am SO SORRY Bill and Hilary, “I have  never had”…intentions to squeeze you off this page. I did partake in ousting Michelle Obama as the #1 trending hash tag for Nashville, TN the week we squeezed her to #2. It was a small week – in this country we call it – re-election week, in a decade where social media – clearly won an election.  I believe it went something like this #pray4tay.   

Tay

Click photo to go to Tay’s site

 One last note to local community leaders, business owners and legislators perhaps you have been fortunate enough to never personally experience childhood cancer. I pray you never do. But if you are one that clicks fast over another bald kids photo or social media awareness page, stop it. We are not looking for nor asking for empathy. We are so sorry that it makes you sad, or maybe even brings you to tears.  We have enough sympathy – we do not need that. We want you to know that ignoring this fact IS impacting the economic growth and development of our community. I’ll use Rutherford County, TN as an example. I personally know NINE local families who have health insurance and who have to spend $40k or more per year out-of-pocket to obtain necessary care for their kids. This does not count counseling for siblings, care for siblings, etc. It doesn’t affect us right? Well, one parent works for Nissan and continues to miss a lot of work to travel out of the local area for Neuroblastoma care (certain this impacts the production line); one works in healthcare herself – and the staff at her work missed an entire day to attend the funeral of her 7-year old. (only 40 patients didn’t receive their scheduled healthcare in RuCo that day, in a critical field that can have many social consequences); one owns her own business that was once thriving and is now nearly closed; ALL of them have gone from a two family income to one, or a single parent who once worked full-time to not working just so one parent can be with the child 24/7. Many have filed bankruptcy. Almost all – have or will be filing for divorce. Our children will most likely have a classmate during their primary school years who has cancer. If your child or grandchild comes home talking about a “monkey in their chair” the monkey represents their classmate who is out of school because of cancer. They will ask you for a few extra dollars to buy a plastic band with their classmates name on it to wear. Some schools ban these bands as not being a violation of dress code. So – yes, if affects us all. Emotionally, Cognitively, Socially, Economically. So, if you ask me how concerned I am about a new conference center and it’s ability for RuCo to compete in an economic arena – I might discuss this with you after you convince me that you have a plan that will really make a difference in the lives of the people who live and work here.

cfhems

Click to see one of the sweetest faces ever. xxEmxx

 I hope you have your thinking caps on. I hope you do more than just think. Imagine, if tomorrow – a terrorist (foreign or home-grown) walked into Siegel elementary and killed 7 innocent children sitting in their classroom. We’d see action. But that’s not quite the right analogy to use. First, we’d have to gather up all of those who love these 7 children – and force them to watch them be tortured over the next year to several – knowing they will die anyhow. What would we do about that? No, this is not shock marketing, this is the truth. A quick visit to the Pediatric Oncology floor at Vanderbilt today – will prove, The floor is full and there are two kids who’s healthcare is at risk as they “wait” in a germ incubator we call the ER. They are waiting because the rooms are full. They shouldn’t have to wait more than 24 hours. Adult Oncology floor has beds immediately available.

cfhl

Murfreesboro’s own sweet girl & Color’s For Hope – Leah Bee. Fighting Neuroblastoma like a BOSS

Situationally Aware.

hero

 I have really had to work on developing my capacity for awareness to the extent that it’s “personal” to my brain – to survive.  I believe I was born with a strong awareness center in my brain which leads me to also “feel” at a much higher sensitivity level. I automatically feel the need to not only label everything I observe, but to categorize it in every way possible – look, feel, smell, sound, positive, negative, feels good, or does not feel good – and please- logical!  As a child, in the absence of emotional maturity, introspection, reasoning, nor any understanding of real life, this awareness center was not always a positive source. Until I learned how to make it personal to my brain, my awareness center got mixed with my thoughts, and Lord knows I cannot believe everything I think! It is much like being supercharged all the time. I have always been somewhat envious of those who seemingly are oblivious to every little thing around them.

Looking all stressed out with my cousin

Looking all stressed out with my cousin

There are many people like me who feel that we were suddenly plugged into a higher voltage of everything, including the force of negativity, which can lead to being overwhelmed, most of the time. I did not realize until I was almost 26 how unconsciously I was living. This coupled with my ordinal position taught me that awareness (done well) is the foundation of how to start coming out of the dysfunction of negativity – and how to stay there. I had to teach myself the mastery of being a pure observer (leaving out judgment/interpretations) without needing thoughts. It’s quite powerful.

This awareness became my light that I have used to identify negativity, and letting it go is an attitude that allows me to dissolve it.  This is HARD work. For me, letting go simply means to stay in a space of allowing the inevitable negativity of others to run out of momentum and fizzle away. Letting go is similar to “doing nothing” or “not engaging”. Just be – and the negativity will soon dissolve. In my life, I have applied it to situations and people. The science behind my theory is simple – life is a space of pure positive vibration and hence it does not support low vibration (negative) states. The only way to sustain a low vibration state is for ME to give it the energy it needs to survive by my beliefs/attention/focus. In short, negative people have neither power nor influence over my life.

If I simply stay in an “open awareness” state – negativity will automatically dissolve since it’s not supported by my life.  It takes time, conscience effort and an attitude of allowing what comes – to come fully. I believe that my generation has not done well with allowing their children to fully feel bad things.  It’s normal to want to protect them, but in real life not everyone gets a trophy and not everyone can be first. This can only come from a place of love – not fear or hatred.

When I was very young, I recall being taught that sin was the measurement of “getting in” or not. As in – in to Eternity. I don’t believe this to be true. I believe it puts our Creator in the smallest box ever. I think He knew we were born to sin, its how me made us. I don’t believe sin is weighted. I don’t believe in degrees of sin. I don’t believe Jesus stuttered. Just ask my kids – I do not believe in rewarding expected behavior. Rather, I believe we will be judged to a higher degree on work that we could have done, but chose not to do. If you can do it – do it. If you can make something better, make it. Always leave a place better than you found it. Heaven

  Sometimes bad things happen to good people.  Until the Clinton experience, I almost always felt that letting go was quitting, giving up. Then I realized that this boy was ready to go. That wanting him to stay here beyond all costs and measures while his little body betrayed him was the most self-centered thing to do. That by witnessing his mother allowing him to go and telling him that he could go and she would be okay was not only the right thing to do, but what he needed to hear.  “Allowing” or letting go has become my definition of unconditional or “agape” love.

Then there are things I can not let go of…like for example: I have friends that think they are hysterical. They bought me a t-shirt that says “Jesus is a Red Sox Fan”.  I countered with a “Jesus loves you, but I’m His favorite” tee.  I don’t want to burst their bubble – but Jesus loves everyone, that’s just his thing. Revelation 22:13 reads “I am the Alpha and the Omega, the First and the Last, the Beginning and the End” – and post note – he wears Heavenly Pin Stripes. I seriously hear Glory Land type music when I see #2 in pinstripes. It’s better than that. Are you aware?

The one..the only

The one..the only

On President’s Day Leadership

When I hear the word “President”, I think about leadership. I posted the following on facebook this morning:

Today our Nation celebrates President’s Day. Although I do not agree with our current President on much of anything, I do respect the office of the President of the United States. If were in charge, it would be mandatory that any new President go through a minimum of military basic training and one deployment, if they have zero active duty military experience. In addition to the oath of office, I would ensure that they commit their leadership to some of our past President’s thoughts as quoted below:

“As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.” – President John F. Kennedy
(How many promises are made during campaign time, then never heard again?)

“No president who performs his duties faithfully and conscientiously can have any leisure.” – President James Polk
(How many costly vacations are there now, with the average American family having zero? This country and those who do actual work for or fought for her owe nobody a vacation. If you are a person that requires this much vacation, this is not the job for you.)

“We should live our lives as though Christ were coming this afternoon.” – President Jimmy Carter

“I leave you, hoping that the lamp of liberty will burn in your bosoms until there shall no longer be a doubt that all men are created free and equal.” – President Abraham Lincoln

(We say we are there, but we are not even close).

 This post has sparked an entire conversation about leadership. The following is my list of leadership observations, which means these are the characteristics I have found successful leaders to have in common with each other:

Leaders get up and are productive early in the day. They do not sleep until 10am.    Ever.

I’m not certain more of a statement is needed – but if I review in my mind the characteristics of the smartest savviest leaders I know, I have never known any of them to be in bed until 10am.

Leaders do not dress like they just rolled out of bed.

Ever.

Leaders are consistent.

Leaders are instinctual decision makers.

They can or are capable of making 30 decisions in 30 minutes – No lie. Decisions that move in the forward direction of productive momentum. This reminds me of my early soccer coaching days. I never allowed the forward offense to “stop” or “trap” the ball that was already headed towards the goal. Instead, I taught them to move to the ball – and continue its momentum.  I watched many coaches with pee-wee players spend a lot of time on drills for “trapping”. It puzzled me. Even the youngest kids show offensive or defensive skill sets early on. Teach the defenders to trap and stop – then send. Teach the offense to move to the send, not stop its momentum. Of course, I also like to make them practice with their arms locked so they moved as one – you know, as a team toward the goal, until they “get it” about team work. Oh yes, that’s right – my generation likes all players to be treated equally, with equal play time and everyone is a winner with a trophy. Yeah.  Because real life is just like that.

 In professional settings, I have always enjoyed allowing employees to job swap for a day. In medicine, the clinical back office thinks the administrative/clerical staff does nothing all day long but sit.  They think this – until they sit in that chair for a day and have to multi-task more than an air traffic controller while having a sweet cheerful voice (as in “receive them well”) every time the phone rings out of the 151 calls tracked on a medical Monday morning.  This one day of job swapping can work wonders for team work.

Leaders use excellent language and have great communication skills.

 I believe, really believe that words DO matter.  The words leaders use compel people to follow them. It amazes me when (as a consultant) I receive a call from a very frustrated business owner and he or she rambles on about why nothing works in their business, sighting many examples of poor productivity  Inevitably, I visit their work environment and observe those in charge (or owners themselves) as the most negative people ever. They hate their work, their job – their own company. They hate themselves. They speak ill of their employees – yet they wonder why in the world no one likes to – or wants to work for them. Here’s a hint: if you can’t stand yourself and think your company is a lousy place to work – so do we!

My father hated foul language. He did use an occasional “cuss word” – but rarely did he have to raise his voice. He told me that simple people used simple language, and he felt strongly that if people needed to use foul language to get their point across – they were most likely suffering from very low self esteem or a poor education, and almost always did not see the value or pride in a properly kept self or property. Definition: guilder.

 Leaders Genuinely Enjoy Responsibilities

            Successful leaders just love being leaders – not for the sake of power but for the meaningful and purposeful impact they can create.   When you have reached a senior level of leadership – it’s about your ability to serve others and this can’t be accomplished unless you genuinely enjoy what you do. People who truly possess a servant’s heart will be successful. It just follows a natural path.

            I had a conversation with a local chiropractor last week and as we discussed adrenal fatigue, etc – the subject of vacation came up. I know he’s trained to recommend certain things, but with tact and couth, I vetoed his recommendation.  Specifically – a long vacation – like on a ship. These types of vacations could drive most leaders completely out of their mind. He secretly admitted he felt the same exact way. A ten day cruise would have the exact opposite effect on me, than what I assume is it’s purpose.  I love to travel – I just don’t want to travel slowly, and for the sake of all things good – not on a germ infested ship with little to no chance of getting off safely in case of an emergency. And no food that I could ever eat.  Did we not learn anything from the Titanic? Floating hotels, I just don’t get it. I prefer to spend my money getting quickly to my destination and to learn as much as I can about the people and their customs while I am there.  In other words – leaders work. A lot. They do vacation, but they tend to still engage in learning activities while “at that place of rest”. Although I have not mastered the skill of power napping, I think I do fairly well at “power vacationing”.  Normally, there is so much information flowing and synapsing through my brain – that taking a long lunch or a Friday Funday session feels like a vacation.

 Leaders have positive energy and a positive attitude

As such, they are likeable, respected and strong willed.  They don’t allow failures to disrupt momentum; they expect that they will fail – a lot.

Leaders create, implement and manage systems.

            Not that they don’t recognize the importance of their people, but they all recognize that in general – people are not manageable, but systems are. They build their systems so that a mediocre person with mediocre talent can follow them and are ecstatic when they get a stellar performer. When this is done well, anyone who can follow their systems can work for them. Period.

They “kick non performers” off the short bus – fast.

            It never ends well otherwise. If the best behavior is exerted in the first 90 days, and that behavior is nowhere close to acceptable, they act quickly – and save themselves time, money and headache. it sounds mean, but it is what it is.

 Obviously my observations have been most beneficial when applied appropriately. I also have some personal rules that I apply to almost all situations (both business and personal).

I chose to spend my time:

  • With those who build me up.  If I am the sum total of the five people or activities that I spend most of my time with and those five people influence the way in which I behave and act in the outer world, and the way in which I perceive, think and feel in the inner world of my mind – I must chose wisely.
  • With a close friend or two that are capable of being my mirror mentors – they tell me exactly what they see in me, about me, with no holds barred, even if I don’t want to hear it – and I usually don’t
  • With those who are far smarter than me. That’s just – well, smart. In opposition, I have watched many bad leaders only allow those not as smart as them under them – so they are never challenged.
  • Not watching television that has any chance of “dumbing” me down. There are a lot of options out there. I have a hard time even understanding why anyone would spend time watching most television and feel completely lost when people speak of “honey boo-boo, duck anything, etc”. I don’t judge others, it’s just not for me and I don’t have the time.
  • Reading. Everything. I don’t believe everything I read, but it’s important to know what’s out there and form my own opinions
  • By only spending my money with people and businesses I like. I watch sales people and meet with many of them. Most of them do not get “it”. Long before I had a business degree, I formulated with a best friend the rule that in order to spend my money with you- I had to like you. Period. It just cannot be painful to spend my own money. In fact, I had an exact example situation of this today. Said stalker rep showed up on site after leaving or being forced to leave his last company. He freaked me out then with his stalker like tactics (private jet, pick me up and take me to dinner, where do I live? Creep) and today’s purpose after several unanswered phone calls and texts (like he’s my friend and can text me) was to show up on site and tell the staff that he knew I was blowing him off, but he had urgent information that was crucial to my business. The only thing crucial to my business is that he is not in it.
  • Raising childhood cancer awareness. Many times I have felt heartbreak more than I previously thought I could bear. This is hard “in the trenches” kind of work that I want to quit every day. I have never wanted to quit anything more or as often. There is nothing natural about personally witnessing a young child die and their mother’s grief – and then most of his friends too. This experience has led me to be ashamed of my generation/adults and the decisions we make. We can and must do better than this. I guarantee that in any other situation (be it a shooter, or terrorist, a drunk driver, a text message sent while driving, etc – if those acts killed 7 kids each and every day, we’d have federal legislation in no time to ban whatever it was – the gun, the texting, the drinking and driving. Point taken?  46/7.

 

It’s just a pair of shoes

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I was introduced to Peach’s Neet Feet (PNF) through Clinton Milliken. Clinton Milliken was a 7 year old Cancer warrior Ninja – who fought Medulloblastoma, a brain cancer, for over two years and stole my heart in an instant. Clinton was only on this earth for 7 short years, one month and two days, but his impact has been powerful. He and his Mom created Clinton’s Club a non-profit organization that supports families affected by Pediatric Cancer in his memory and strives to change the statistic 46/7. Clinton loved Random Acts of Kindness (RAOK) and specifically requested them to be performed on his last birthday with us (12/17). Therefore, it is no surprise that Clinton loved Peach and her mission! Two peas in a pod. (www.clintonsclub.org)

 PNF is a grassroots custom shoe donation project. Madison Steiner and her team of guest artists hand paint and donate canvas shoes for children battling cancer, serious illness, and lifelong disabilities. Shortly after meeting Clinton, he received his pair of PNF’s and oh how he loved those shoes! I remember how amazing they looked, but more vividly I remember how they made Clinton feel. Clinton’s PNF’s brought him Joy and made him smile that smile. He used descriptive words like “cool”, “colorful” and “special” to describe his shoes. You can see some snazzy photos of Clinton’s shoes here: http://www.peachsneetfeet.com/theirstory/57-clinton.Image

 Being introverted naturally lent Clinton to be a thinker and he had an amazing analytical mind. He told me all about the process of painting shoes, and how he had picked what should be on his very own. Clinton’s shoes were sponsored by Fletcher Christian, a complete stranger. We probably never thanked him appropriately, but as I wrote this post I thought about him and decided to message a note of thanks. Better late than never! This is the reply I received today “Well, no thank-you was ever needed. As odd as it may be Clinton had a very big impact in my life, and helped initiate a change for the better. But, I did it in the first place just to help bring a smile to someone who needed it” I’m telling you people – this is where the magic starts! It may seem like just a pair of painted shoes, but it’s so much more. We all knew Clinton as a cheeky 7 year old hero. Our hero, who touched the lives of complete strangers – and still is to this day.

 There always seems to be a story to tell, that is – if you pay attention.  Not just listening, but really putting “feet” to the needs of those around you. I specifically remember my father refusing to hear negative words spoken, and he certainly would not tolerate laziness. I can not recall exactly what prompted this life lesson, but I do remember being very young and riding with him to a place where others had far less than we did. I can still hear his words –“no matter how bad you think your current situation is, there is always someone who has less than you, yet show far more gratitude.” He usually ended these discussions with expectations of ways we should contribute. Perhaps this is one of the reasons I was immediately drawn to Peach’s Neet Feet and Madison’s incredible vision. So after Clinton received his shoes, I quickly checked out the PNF website www.peachsneetfeet.com and began following their efforts via social media. Talk about love at first sight! I knew I had to sponsor shoes for more kids – and spread the word of this fantastic non-profit. Soon, my friends were contacting me, begging me to get them an “in” so they too could sponsor shoes. There really is no “in” – just send them your money!  I have always said – there was just something special about Clinton – and Peach saw it too. She dedicated this piece to our Ninja King. (Watch all the way to the end!)

http://www.youtube.com/watch?feature=player_embedded&v=IB8Uvf9JqhM

 Fast forward a year full of connections and opportunities to sponsor shoes. I have experienced an immeasurable amount of joy by sponsoring and watching these kids receive their shoes. At this point, I just go online and send money to Peach and her team works their magic. In a somewhat routine email, I received notification that my last donation had sponsored some rocking PNF’s for not only a Leukemia warrior – but a Down’s Syndrome (DS) Leukemia warrior! If you are not aware – kids with DS are at an increased risk for Leukemia – but it’s a double edged sword. The very genetic mutation that lends itself to better NED rates, are the very same mutations that increase the risk of Leukemia.  It’s hard to put into words exactly what happened next. Somehow through the magic of social media, Keeton’s mom, Misty and I realized that we are long lost sisters or something! In the very short time since Keeton received his PNF’s, I learned that his parents wanted more than ever to have a 3rd birthday party for him –and just have one day of being a “normal” kid. However, going from two incomes to one while fighting childhood cancer just doesn’t save room in the family budget for birthday parties. WHAT? I could provide that! I immediately fell in love with Keeton – from a photo. I printed it out the same day I received it – and there it has stayed on my refrigerator and in my Bible – a reminder to pray for this child each day. Most mornings, Keeton is the first thing I see. Keeton loves Blue’s Clues and my heart was stolen by Keeton. So – with some help from other Clinton’s Clubbers, we planned, created, and crafted our way into creating a Blue’s Clue’s Birthday Bash to beat the band! Volunteers came together with countless hours of crafting and executing. None of our volunteers knew Keeton, nor would get the chance to meet him. At the time that I committed, I didn’t even know where he lived – but anywhere is accessible by aircraft – right? As it turns out, we only live 3 hours apart! I drove from Nashville with my son – and a car loaded full of Blue (and a cake that made it over Monteagle mountain doing – you know, the speed limit!). We had 30 minutes of set up time – never seeing the party location, but with Keeton’s local friends, we pulled off a fantastic Blue’s Clue’s themed party. It was an amazing experience, one that has changed my life for sure. To be able to watch this little guy dance, play and eat cake with that fabulous smile – worth every minute and more. Today, Misty posted this on my facebook wall: “Lori, on days my faith is weak and doubts flood my mind… I know a greater power is there watching and waiting for the perfect time to send a special someone into your life. It’s truly amazing how a pair of shoes could change our life, but those magic shoes have touched our hearts and our life in more ways than I can count. You could’ve sponsored any child, but you fell in love and chose this precious ray of sunshine named Keeton. It was an instant love and connection for all of us with you and your family. It feels like we’ve known each other forever and we are truly blessed & honored to call you all family. God’s ultimate plan♥ Life hasn’t been easy and not having family has been even harder. I’m so thankful for having you in our family. I would be lost without the love and support from our “c” family. Thank you God for blessing us with you♥.

 

 My favorite Keeton story is yet to come, I just know it.  I can not wait for the day that we celebrate his “I Love you’s” spoken to his Mom. During my short visit, Misty told me how she had the chance to take Keeton to Disney on Ice recently. He does not communicate with words, but the joy in his heart and his level of excitement was so overwhelming that each time a new character came on the ice, he turned around and hugged his Mom. I love this. This is a true representation of a PNF warrior. 

 It really is an amazing thing. They are just a pair of shoes. Instantly family through a pair of shoes?  I never set out with the intentions of being thrown into the Childhood Cancer world – but no one ever does. I have been blessed to know these families and what they give to me is far more than I could ever give back. I have loved with them, lost with them – and will fight with them to change this unequal equation of funding for a cure. It’s mind boggling really. There are too many beautiful families to mention in one post, but I can assure you one quality they all possess for sure. They spend their time living. Sometimes moment by moment, but never just waiting for death to occur. Until the last breath their child takes they fight and have hope, they raise each other up. They love like nothing I have ever seen. They celebrate the smallest of things – like band-aid drives and plastic bracelets with each other’s names on them.  I have witnessed more living and more life experiences wrapped up in short lives than some who live 85+ years ever experience.  It’s true, I’m a volunteer – but I get paid. BIG.  As I was pulling away from the party (the first time – Misty led me to the hotel, but couldn’t keep driving home as planned. She had to pull in and get out to say good-bye one more time) little Keeton slapped his hand over his perfect little mouth and blew kisses to me. Misty was stunned. She didn’t think that Keeton really connected with others, but he did.  I have a feeling there will be a lot more of those blown kisses delivered, and I can’t wait to catch them!

 So, yes – it’s just a pair of shoes. A magical love-filled pair of shoes. Thank-you Madison and PNF for allowing us to be part of your tribe.

 “He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4

Hope’s coming like a fire and its’ burning bright – Colors for Hope

Colors for Hope has (rightfully so) received a lot of press and media coverage in the past few weeks.  For those of you that are already our facebook “fans” – we thank-you for following us and for believing in our efforts.  We only act as the vessels of delivery for these beautiful children and the Hope that they inspire. We promised our little fighter, Clinton that we would carry on, and that we will do.  Kim presented the information to the Clinton’s Club executive board and we agreed to sponsor Colors For Hope.

Colors for Hope was inspired by a spoken wish from our Tay (Taylor Filorimo) to Clinton’s Mom,  Kim. Tay wanted to create her own nail polish – and she even knew what specific shade of Lime Green she wanted. This girl knows what she wants!  Kim has the incredible ability to just make things happen. Kim did all the background work to make this wish come true for Tay, and the rest of us struggle just to keep up! Tay’s Color For Hope  is Lime Green and is aptly named “Pray 4 Tay” – as this has been her personal campaign all along.  If you know Tay or have followed her story, you will see that this is not just a quote from her, but the way she faces every day -“I will NOT let the FEAR of cancer STRIKE me out”–Taylor Filorimo.  Our Clinton loved his Tay as does everyone who meets her.  To learn more about Tay, watch this video that tell’s Tay’s story and if you haven’t heard it ~ you should listen to it – it’s her song – “She’s a Hero – Tay’s Song” http://www.youtube.com/watch?v=hfNh2LSCNP0&feature=share. Here’s a photo of Clinton and Tay that was taken last March.

Of course, just one Color For Hope was not enough for Kim so we developed the inaugural set of 9 colors, honoring those who still show us how to battle, or in memory of the couragous others we have lost. At least one of us (and usually all of us) has a personal connection to these children.  Our current colors are here:

 Now  – here’s the great part – we launched the sale of our original order and were completly blown away by selling out 100% of our inventory in under 4 hours.  We had not even completed our press releases – this was all acheived through social media alone.  We have tried to keep the associated costs very low because we want our administrative costs low and our giving dollars high.  We have many orders that have been sitting waiting to ship out as soon as the product arrives. We expect arrival date to be Monday, May 21st – so if you have not received your order – it’s on it’s way – we promise. We sold all over the United States – and then went global with orders from England, Germany and South Africa. Amazing!

 You may order one single bottle of any color – for $8. The entire set of all 10 colors is now $70 (the inaugural set pictured above had 9). Let me explain some of the confusion on shipping. The shopping cart on our website adds $5 shipping for each order. So, if you order 4 Ninja Blues it will automatically add $20 shipping. If you need multiple bottles of one color – please email lori@clintonsclub.org and we’ll create a seperate invoice and send it to you via paypal.  To place an order – visit our website www.clintonsclub.org and click on the second tab – Colors For Hope.

So what are we doing with the money? 100% of the proceeds will stay with Clinton’s Club to be used for all kids with cancer in our area. So far, we have sponsored events and provided media coverage and assistance for other events in our area – but we are mostly still in fund-raising mode. We have not spoken this publicly – but we are saving every penny that we can (donations, yes – we’ll take them!) because it is our dream to open up – Clinton’s Clubhouse on December 17th on what would have been Clinton’s 8th birthday. We are praying this will happen and the funds will be there. We know the property we want, now we just have to wait for it to all work out! Clinton’s Clubhouse will serve as a place where Cancer kids and their families can come for fellowship with each other, counseling and classes – as well as fun things – such as camping and “feeshin”!  We have plans for art classes, Mom’s Day out, etc. We are working on room sponsors and so many other things – it will make your head spin!

Thank you- thank-you for your continued support of us!

www.facebook.com/clintonsclub

www.facebook.com/colorsforhope

 

 

 

 

 

Bullet in Bosnia


Thursday, February 23rd was supposed to be an ordinary albeit busy day.  Ordinary for me means well planned and perfectly executed in my head. I had a consulting job that required flying to Tampa for a few hours and returning the same day.

It all started well – for the most part I was on time (people who know me, hush). I left the ‘boro and headed to BNA and as I rounded the ramp to I24 – knew it was time to get my Nascar drive on. Dodging traffic, necessary dumping onto shortcut roads ensued and I made it through security in a record 9 minutes. As I approached the gate, I could see the plane barely backing away. First EVER missed flight, other than those I have on purpose rescheduled, and I think I do more flying than the average person. The gate attendant smiled big and said “Good morning Ms. Hoyt, I have put you on the next flight to Charlotte” Agh! Good time to have permission to have a bad attitude.  So I took my little bad attitude to the coffee shop to review the notes for work. I fired up the IPAD and settled in. Waiting over an hour is not something I am good at. I finished my notes as they began boarding the next flight.

I normally do not fly US Airways. Not because they are more expensive (and they are) – but because I feel their customer service as a whole is dreadful. Case in point: Emergency seat #14 was empty on this flight and they offered it to a retired Sergeant Major. This seat gives a little extra leg room but also some responsibility in case of an emergency. He said yes, and without any gratitude the staff informed him that there is a fee to take this seat. The four of us standing nearby were slightly stunned. He politely told her that in case of an emergency – he would do what he could to help but he would not pay to do so. The entire flight boarded – we all sat in our assigned seats. His was next to mine. As the plane began to fill up the 3 guys and I (in our 15th row) wondered if they had sold the emergency exit seat. They did not. After they pushed back from the gate, we suggested that he sit there. He moved. The staff told him he could not sit there.  What is unfortunate for him is something I tell my public service friends all the time – they have you pegged. They know you would help for free. Regardless, we had a great discussion about the stupidity of that policy. In our stupidity conversation, this soldier told me he was on his way to Walter Reed Army Medical Center (WRAMC). My first reaction was to tell him to not go there. But he said he was treated there initially and goes there for PT. He quipped that most Army guys are willing to talk about the Army. He did not tell me about his injury or what happened specifically. The all male (plus well – me) conversation turned to the subject of Golf.  He watched me sell some TEAM CLINTON bands and I gave him one. He asked about Clinton. I have a lot to say about Clinton but I was trying to make it relevant and perhaps secure some golfers – so I told him about our upcoming Fall tournament.  The plane landed and we found ourselves walking to neighboring gates for our connecting flights. I had to go a few gates further – so he hugged me and said, you know “If I can take a bullet in Bosnia for people who most of the time do not deserve it, I can certainly play Golf in Nashville, TN for a 7 year old who deserved more”. In retrospect, maybe he wasn’t hugging me at all – he was just helping me remain on my feet.  We exchanged email addresses and he emailed me first. He said he would be inviting a friend of his, named Tom. He said as part of his PT at WRAMC they gave him Golf clubs and he learned to play but he is not any good. His friend’s name – however – Tom Watson. That my friends is a true story and one that I can not wait to watch unfold.

I got to the gate and looked at recent Facebook posts. I found out that my cousin was on the first flight that I missed to Charlotte. I called him and he was already on Post and there was no time to meet up. I only mention this because I am certain that no airline could handle two Woodard’s on one plane, and because it makes me think that had we been on the plane together I probably would not have talked to this retired Sergeant Major. Amazing right? The day had just begun!

I boarded to Tampa and had a boring although smooth flight. I got picked up at the airport, consulted – learned all I could in the 3 hours I was there – noted it was hot as heck in FL and  briefly saw the ocean.

As I walked into the Tampa airport, I proceeded to the tram and a lost couple asked if it mattered which side they entered the tram. I explained no, the doors would open correctly, and asked them where they were going? Home they said. I heard it – an accent so memorable, I felt like I was home.  They said “England” I said, where? As in, try me. (In the same way people say they are from upstate NY). They tell me they are from an ever so tiny little village in Norfolk, England. Then I told them I lived in Croxton, Thetford, Norfolk. Not a town by any means, I mean – we didn’t even have a pub. Their eyes grew bigger. We talked for 30 minutes about so many things. England. Jumpers. Ribena. Cold. Fog. France. Brandon. England. Lorin. Clinton. America. Vacations. Barbados.  At one point, Brian said he is always surprised at how friendly Americans are. The words “oh that’s just southerners” actually came out of my mouth, and I laughed near hysterics when he said “southerners then”? We decided we better get to the other side of the security check point so we moved through and I, like usual got stopped. I could do another blog post on anti-profiling, but suffice it to say -if you have red hair, blue eyes and look them in the face – you will get pulled. Every single time.  As I got to the other side of check point catch that girl, the retired couple from England were waiting. They pulled out a little piece of paper that served as their business card. She cried, said she hated good-byes. I said the only thing I could think of (borrowed from my brother Jeff) – it’s not good-bye, it’s “see you again, then”.

So, I tucked the paper into my bag and had like 5 minutes to get to the gate.  I pulled out the paper after I boarded and read the note on the back. Please do come to England. Our flat is your flat, and our boat in Cedex, France is yours for the asking. How can I not be blown away by this? I just can’t.

Lorin has this dream to live in England on a farm -and sew her own clothes.  It sounds silly, but if you know Lorin – it makes perfect sense. I do not know yet what her dream really looks like, but I can not wait to see it come true. The photo below was taken a few years ago – but it’s one of my favorites of her and I. Ever looked into a mirror and have it look and talk like you right back?

My son Brandon, was named after a tiny little village in England where we briefly lived in a small freezing bungalow, until we moved to Croxton – further away from the Americans.  He has dreams of living in Japan – but he hasn’t been to Brandon, England yet. This is on the list this year. Totally going. One step closer to that too.

Overall, a very productive day. I came away from that day exhausted and back in Nashville. I am certain the English teachers viewing this will tell me that the ending of this story should be longer and tie back into all the components. But this is my story, and I am not being graded. As I drove back to the boro, I couldn’t help but wonder if these experiences are around everyone everyday – we are just too consumed in busy-ness to not look, not connect? ONE day. What a difference it can make.

-WGO