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

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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

 

 

 

 

 

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