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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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