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/

My sweet sweet Clinton.

Those of you who know me, know Clinton. A brave little chubby faced 7 year old fireman rain boot wearing King. Clinton was diagnosed with a Medullablastoma (brain cancer) just before his 5th birthday.  Clinton did have Cancer – but as you read his story or watch his videos – you’ll soon see – Cancer did not have him.  Clinton was a somewhat introverted child who was quite a thinker. He watched, listened and he learned -therefore having most things figured out before he did them – and mastered most things on his first real try.  He was so funny and his laugh one of the sweetest sounds ever. He was cranky, and sometimes irritable. It took an entire kingdom to care for him well, under the direction of the King Mother.  Saturday, January 14th was a beautiful, yet most difficult day.  Lorin and I met Kim, Clinton and Max at the office so Lorin and Kim could work. My job was to play with the boys.

I do this well (and only cause moderate trouble).  We normally would not stay in the office and play – but we did that day. Lorin raced down the hallways with “the Max” on a medical chair and Clinton and I laughed and dared them to go faster.  Clinton pushed Max around on a dolly while Kim and Lorin were in the attic. We hung out, and just laughed. Clinton was extra nice to Max this day. Rare.  After an hour or so of playing there,  Clinton, Max and I left Smyrna for Murfreesboro around 1:50pm.  We were singing and laughing – and some of us were dancing in our booster seats.  We had a discussion about business cards (see the card in the photo – I missed the failure to “bleed the top edge, but my boy gave it a thumbs up anyhow -and this is the photo I snapped at 2:06pm),  cumulus clouds, Mangers, and the beach. Clinton had loaded the side pocket of the passenger side door with “ice” bullets just in case anyone tried to follow me. He always has my back!

Clinton loved sweet tea. Being the marketing protege’ that he was, he did not miss the McDonald’s arches at exit 70. I convinced him to wait until Murfreesboro. We exited at medical center and drove to the N. Thompson location. He got his sweet tea.  The receipt says it was 2:08. We headed to the house and were attempting to cross over Broad on N. Thompson (wait for 3 light changes). After Max listened to “Light Up” by the Newsboys 10 times, Clinton grabbed his forehead – and I asked him if the music was too loud. He said no, he just wanted a different song. I hit shuffle and “I can only imagine” by Mercy Me came on. Clinton approved. The words  “will I dance for you Jesus, or in awe of you be still” had just played when Clinton said “I can dance right here in my booster seat.”  We crossed over Broad. Merged left and Clinton grabbed my right arm. I asked him if he was going to be sick (normal drill, drive, grab pink puke bucket). He shook his head no.  There are other details that I’ll leave out – but, he never let go – and he never lost consciousness, nor eye contact. I knew immediately he was having a stroke.  My biggest issue  – that felt like an eternity, but was probably a 3 second decision – was to decide on turning that car around and go back towards MTMC or get home and intercept EMS. I opted for home/EMS for two reasons. One, I was slightly closer to home – and I had to maintain his airway, drive and keep Max safe and not scared. I knew if I got home, Max could be with Brandon. I knew if I went to MTMC with Max and Clinton, the odds were they would make me leave Clinton and that was not going to happen. I got as close to home as I could and told Max we were going to race to my front door. In true Max style – he took off and never even looked back.  I ditched the car (I think 3 of four doors were open), to help Clinton. I called 911 before we got off N. Thompson. I may not have told the exact truth about my location, but I wanted them on the move to my house as I was. I did not want to take the chance on confusing anything on an intercept.  EMS did not disappoint. First responder was pulling up as I was. EMS was there in under 3 minutes. We got Clinton to MTMC in 9 minutes, and to VUMC in under one hour. I did the best I knew to do, and have reviewed my decision half a million times in my head.  The Vanderbilt LifeFlight team was amazing. Mark Tankersley, RN, CEN, EMT will forever be one of my hero’s.  Their website is http://www.vanderbilthealth.com/lifeflight/.  We then spent 5 days at Vanderbilt Children’s. During this time we knew the news was not good, but in true Clinton fashion, he was not done giving us gifts. He opened his eyes several times and responded to questions with yes and no nods. He was not scared. He knew we were there. He was not in pain. He had heard the things we were saying to him. He wanted his Foley catheter out for starters, and while we were at it – his intubation too.  He managed to get his Foley out with his monkey like toes. It took all hands on deck a couple of nights to keep him entertained and not tube yanking. He even did that on the sly!

I did think and worry about this day and how I would handle it.  I am thankful that God showed his grace and allowed me the self control needed to keep my promise and stay with my little King until the end, plus a few hours more – until he was ready to take another ride. Clinton was peaceful, he did not suffer and was in his mother’s arms – no better place to be. He knew he was loved. He was surrounded by the people who loved him most, and who have never wavered. We would have never chosen this to be so – but what a gift in the end. We think of so many parents who get phone calls with no chance to say good-bye. We did over and over. We didn’t always know what to say (okay, maybe Kim did and I didn’t) but Clinton knew that we would stay and fight with him if that is what he chose, or let him go if it was to be. I will forever love the photo below. A superboy who wore a cape to chemo – and his personal assistant utter mutter. 

Kim and Jeremy gave our little warrior the ultimate gift by letting him go, and telling him that Mom would be okay. Clinton shared with me months ago that his greatest concern was for his mother – and he wanted to know how I knew that she would be okay.  He wanted to know how long she would have to wait to see him again, and if she and I would always be friends – even when we grow up.

This little boy with a wise grown up soul, brought me unspeakable Joy. No one met him without falling in love, and those who didn’t meet him in person, fell in love. If you ever have a chance to be someone’s “utter mutter”, do it. Don’t love them the best way you know how – love them the best way his own mother would (with some added spoiling, and “getting in trouble” together). Yes, it is true we once were put on punishment together. Whatever. Kim does not like to be called “strong”, but she is. She was chosen as the only person who could be the mother of a precious little King on loan to us for 7 very short years. She provided more than a lifetime of experiences for her little best friend. They have a connection that is often overlooked by many mothers and sons. He opened his mouth and often her words came out. They got each other.

It makes us happy to see his photo and smiling face plastered all over social media. Don’t forget your random acts of kindness (RAOK) in our little Kings name. Clinton loved this and was a giver. Raise Childhood Cancer Awareness and insist on equal funding for pediatric cancer research. Right now, the equation is not balanced. For every dollar allocated to adult cancers, children get 30 cents. We ought to be ashamed of this. 46/7 Awareness deserves and will get posts dedicated to this alone. If you do not know what 46/7 is – ask me. Google it. Better yet, ask your legislators if they know. Demand to know the numbers of allocated funds percentages to pediatric cancers before you give.

Clinton spent many weekends being well loved at my house. Lorin and Brandon spent countless hours making sure he was entertained and happy. It’s true, we went on adventures, ran out in the wee hours of the morning if he wanted something to eat that I didn’t have, built with legos until I couldn’t see straight, watched spongebob until I too knew every word – but every minute was worth it. Together, we pushed the limits of having the most insane fun we could have without getting into trouble with Mom. Clinton had life experiences that many live into their 80’s and never experience. Yet, through it all – the one thing that simply amazes me – is that in the worst moments like last Saturday, I realize that I still think that life is amazingly beautiful -and so is he. He was a gift.

There are few words that do justice to Clinton’s bravery and endless optimism in the face of adversity. His smile and laugh were simply infectious.

I love this photo, it’s like Heaven was shining down in the OR on 12/17/2004! Since meeting Kim, I have been in awe at the selfless sacrifices presented by her. She truly put Clinton’s needs above her own without hesitation. She set aside her own anticipatory grief and fear while her embrace became a stronghold of strength, comfort, and love in a time when he needed her most. Even as he transitioned from her arms to the loving arms of Jesus…because she instinctively knew that’s what this little King needed. I haven’t always found the right words to express to her my gratitude for sharing her children with me. I know I do not deserve them, but I am so glad to be chosen by Clinton (and now Max and Jordan too). The connection is inexplicable. I have thought of myself if this same situation presented and if I would ever have the courage and bravery to let my son spend time with someone other than me if I knew those days were numbered.  Kim will tell you she just needed rest. It’s not all together true. It was one of the largest gifts I have ever received and I think she taught me the greatest lesson on selflessness that I may ever learn.

On our weekend visits or the one day we played hooky from school and work – Clinton would tell me about all of you. Some of you I didn’t meet until a few weeks ago. As I met you, I watched to see what Clinton saw.  I am certain I will recall more of these conversations over the next few weeks and will share them with you as I do. Clinton told me about:

  • His cousin Elizabeth, as well as how excited he was that the new baby girl cousins were born this summer
  • Clinton told me that G-Tom uses his convertible to take the trash to the dump and one time even put manure in that same car-and it stunk for days.
  • Clinton said he loved going to GiGi’s house because she didn’t mind watching his favorite shows all the time.
  • I’m not sure if you knew this, but when Clinton wrestled or played with his Daddy, Clinton always won. Clinton asked me one day if I knew he was born second – but that it was him that made Kim and Jeremy a family. He had this way of making statements that grabbed you as he went on to play with play-doh or build with legos as I tried to not just sob.
  • One of the first things he ever showed me was a photo of his Kate. He adored this little girl, and they were the best of friends.
  •  Clinton loved his big brother Jordan and listened to his every word and thinks he knows all there is to know about games and music.
  • We all know Max was surviving his toddler years when Clinton became sick. Sometimes medicine can make you irritable, but if you watched Clinton as a big brother – he always knew where Max was, what he was doing – and if he needed anything. He loved his little brother.
  • Clinton told of art and craft days with Aunt Kacy. I once asked him if he wanted to make something fun. Matter of factly he said “no, I do that with Aunt Kacy”. This smart boy had his own categories of who he did what with and made each of us feel special.

 Clinton’s unbridled enthusiasm for life was contagious, and I think you should catch it. If you didn’t know, Nissan makes all their cars for Clinton, especially the blue cube and his red racer – GT-R.  He was a professional Cube spotter and would just yell out CUBE when he spotted one. Since Thursday, I have seen two – and we now yell out Clinton. We’ll have to see about making one in Clinton blue. Now who would vote for an official paint color called Clinton Blue?

I’ll end with things that Clinton loved. He loved animals and wanted to be a Veterinarian; he loved visiting Trudy and Hugh’s farm – and told me about the birdfeeders there, he loved the color blue, he loved chocolate covered strawberries, Spongebob squarepants, the ocean, “feeshin”, he loved to “give” things, he loved the song “Sweet Home Alabama” and yes, he loved coffee. He is the only other person in my life that could be hanging out with me at like 2am and sort of whisper – “I want coffee” And then actually drink it with me in bed. Or get up and just dance – he had mad skills!

But, most of all, he loved:  you.  and me.

Clinton officially earned his angel wings at 2:46 on 1/19/12 when he was re-delivered. However, those of us who knew him know that he had them all along. 

Clinton’s obituary: http://www.legacy.com/obituaries/tennessean/obituary.aspx?n=clinton-milliken-the-king&pid=155562016&fhid=4485&refsvce=facebook#.TxsWvl_Pss8.facebook

Clinton’s Club (non-profit 501(c) (3) can be found by clicking: http://www.clintonsclub.org/

You may also keep up with TEAM CLINTON on facebook by clicking here: http://www.facebook.com/clintonsclub

and here: http://www.facebook.com/profile.php?id=100002561530531

Clinton’s entire story can be found by visiting his Caring Bridge site: http://www.caringbridge.org/visit/clintonmilliken

Clinton’s Tribute Video (thank you Kyle Thigpen/Nissan)     http://youtu.be/rAvcMrPkkK0

And another  made by my friend Steve Williams- http://youtu.be/rAvcMrPkkK0

And if you really want to watch another fantastic video: http://youtu.be/lj8QqAP-Phg