Clinton Mabry Milliken and two years

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Today (January 19, 2014) is no different from any other day since January 19, 2012. Two years seem like forever when it’s a rough moment. Two years seem like a nanosecond when it was the total time you got with an extra special little boy. Just another day to remember an incredible kid who irrevocably changed my world and the world of so many others.

I have had time to develop my list of Clinton lesson’s. Some days I refer to them as “The Clinton experience” because it is almost surreal. I have always believed life is full of paradigm shifts (ie – ideas that may be more or less fashionable during any given period of time, but all regarded as legitimate), I just tend to be on the side of those that believe without seeing much quicker than others.

The world thinks – the best educations are obtained from Ivy league schools with the most astute professors. Not to be argued, but no one can discount lessons taught by a 7-year-old who had only just completed Kindergarten (and half a year of Kinder-grader. That is – part K and part 1st grade in one day).

Clinton taught me –
– patience and kindness on a different and more meaningful level.
– to realize that there really are people who do not deserve my time.
– to push boundaries – almost to the illegal point. (No – wait, allowing a then 6-year-old to drive may have been – technically, illegal.). Prove it. Then, arrest me.

The world needs to know that once you survive the loss of a child, it's got NOTHING.

The world needs to know that once you survive the loss of a child, it’s got NOTHING.

– that my professional work and some people “very close” to me – needed me more far more than I needed them, and that they would never be capable of respecting me nor my decisions. It was an ouch moment.
– to stop trying to please those who could never be pleased, but to instead focus that energy on those who need and are grateful for my voice, time and talent.
– that the world STINKS at second chances and that so many judge other’s decisions, yet have no clue what it’s like to make decisions even close to the levity that they are judging.
– how to lose gracefully. I’m really bad at this. Yet, to compete like I would win and never ever give up the hope of winning until your Momma tells you it’s okay to stop.
– how to keep going when everyone except your biggest cheerleaders say you will fail.
– he sealed my belief that the world needs to pay more attention to the wisdom and resiliency of children. Especially children faced with the most agonizing circumstances. Of course, bald-headed kids – but also the children of Africa, orphans – or any war-torn area. Watch them find pure happiness and joy in the simplest of things. It will change you and your ideals of what you think you need.

It’s not just myself that this boy taught. I could never tell and retell the numerous people (complete strangers, never having met Clinton) tell us how he changed their life. It still blows our minds.

I read a quote recently (paraphrasing) that a person actually dies twice. The first time – when their heart stops beating. A second and final time when no one speaks their name. Clinton’s second time is not happening.

It’s just not.

c laughing

Please remember me.

Fit for a King

Fit for a King

Want to see some awesomeness? Click away:

https://www.youtube.com/watch?v=lj8QqAP-Phg

https://www.youtube.com/watch?v=rAvcMrPkkK0

https://www.youtube.com/watch?v=yN9wpeflqgA

www.clintonsclub.org

Above all, Clinton wished that Cancer kids, could “just be normal kids”.  Admittedly, I was not 46/7 aware before Clinton. Childhood Cancer is killing our children far faster and in more number than any other single disease, incident (think terrorism), etc. As Americans, we seem to not care that our federally funded Cancer research dollars are allocated in such disproportion that we spend 99 cents of every dollar on fighting ADULT cancer and one penny of every dollar to childhood cancer. If this means nothing to you – I challenge you to spend 99% of your family’s income on yourself and 1% on your kids and see how long before child protective service visits your home – and takes your children away. Just think. Then DO something. (Please, research those non-profits you give to. Just because they use smiling little bald-headed kids in their marketing, does not mean they give to children). Legend has it, I was known to throw a few breath-holding-until-I-got-my-way fits when I was little. Being the baby and all. Loving a Cancer kid has taken this skill to a whole new level. Childhood Cancer Caucus – you’ve been warned. Since the Clinton experience, I have added a few hundred more children to my list of advocacy. I’ve got your number, I see your little lies. You’ve had a good run at hiding the numbers of incident by labeling childhood cancers – rare. Yeah, we’re not that stupid – anymore. Until you come up with names that distinguish the different types of breast or prostate cancer – you are no longer allowed to call the “rare” childhood cancers – names like: Medulloblastoma, Leukemia, Neuroblastoma, Renal Cell Carcinoma, Wilms, Rhabdomyosarcoma,Retinoblastoma, Osteosarcoma, Ewing Sacroma, etc. To do this and then tell the world that childhood cancers are rare is a lie. Add em up. Then tell the world that the parents of kids with cancer did nothing wrong. Be sure to also let the world know that most (no not all, no hate mail, please) of adult cancers are the result of personal choices. This is not like the idiom of comparing apples to oranges. This is more like comparing apples to – deep-fried-chocolate-dipped-bacon. 

https://woodardgirl.com/2012/02/09/my-sweet-sweet-clinton/

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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.

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