In September Madison wanted to celebrate her life while she was here... a living memorial of sorts: we thought it was a wonderful idea and an incredible gift to so many. Leading in to the Saturday and Sunday events was the guest list for Sunday. Madison was firm in her conviction: she wanted family of course, but only friends in her everyday life. I bounced a couple of names off of her, people very close to us. She said "sorry dad... they're your friends and you can have them at my funeral. Understandable... sort of. I replied "hang on sister... how many services do you get!?" Since she passed last week we've been asked by numerous friends and family members if there's going to be a 'service'. The answer is there will be something... to be determined. The what and when are still in the air.
Jan RN and Madison's counselor Tricia stopped by on Monday afternoon... they actually met for the first time. Both were wearing a lotus flower bracelet that each had received from Madison... only the two were given. Jan did confirm that she got the tattoo because of Madison. Tricia while bound by confidentially, could mention only that Madison was a career-changer, and that Madi was far wiser than her years. Tricia helped Madison in so many ways during their journey, which started in 2013. That said it's difficult not to question her commitment... Jan RN did get a tattoo.
A little about Extreme Mobility camps: Madison's first experience was in 2015 after her cancer treatments ended and she has been a winter and summer trainer/counselor ever since. When word recently spread that Madison's cancer had returned with a vengeance, a lot of people were caught off-guard. It wasn't about her, but about the blind and visually impaired youth so cancer while known by some, was not socialized.
Madi's moms and dad could see the profound impacts that her XMO experiences had on her. Last winter she had an angry metastasis in her chest. While she politely asked moms and dad if it'd be okay if she went knowing she'd have to self-drain the fluid from her lung, we knew she wouldn't -not- go, she'd figure out how. Add to that, her 'wrecked' lung limited how much oxygen that she could absorb at sea level much less at 9,000 feet. Madison had levels of stubborn determination that many people didn't often see. While part of her charm, that helped propel her through the surgeries, the radiation in Boston, and chemo. Her absolute refusal to curl up in fetal position and 'go' quietly has been a life-changer and a humble reminder that we're all mortal beings. The Color Run gift that Julie, Deanna, Agi, and Theresa give Madison was SO powerful: each of these five women are in a Young Adults with Cancer group. Live, Love, and laugh.
Summer camp 2017: The "stable results" was actually fake news, but we didn't know it then. Her pain had been creeping up but she wouldn't miss the XMO summer camp, despite needing to be in San Francisco for appointments during camp, more here.
Fast forward to December 2017: Madison being a realist knew she wouldn't make it to Winter Camp in 2018. We told her we'd try to wiggle in on her behalf to help however we can to experience the wonder of she saw leading blind athletes to do what they never thought was possible. She said "that'd be great, I hope you go". Pondering that, we told her one of us told her that we'll go no matter what, we'll shovel horse crap and bring our own shovel. Madison wept.
So what are Extreme Mobility Camps aka XMO? Dad met with the founders Bryan and Mindy for lunch on Monday and wiggled into to helping in Colorado next month... have shovel will travel. Learning how XMO started and how it inspired them, inspired me. I also learned that they may be covering part the expenses from their own pockets. Note 100% of the tax-free donations go explicitly to the cost of hosting the camps, it's truly a grass-roots and mom and pop organization. There are 46 blind and/or visually impaired youth signed up for Winter Camp in Winter Park in Colorado next month. The decisions while painful seem simple: reduce the activities to reduce costs, hope for more donations, limit the number of youth, or they may personally go in to the red.
Madison's moms and dad understand the inner-workings of XMO Camps and fully endorse and support them. In lieu of flowers for Madison's final service (which won't be labeled as a service or funeral), please consider instead a contribution to Madison's favorite non-profit in her name, XMO. Note many medium to large enterprises match employee donations to charities, so you might want to check with your manager or HR department.
The Jones Family
Pssssst, hey Madi - Rodger came by last weekend for a visit and was actually on time. He still thinks his windshield wipers clean his whole car so we washed it together, then yours. Love, dad.