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