Blog Archives

Slow Going

1/29/2018

It took time to get through all of her college notebooks. Once the first scribble on a piece of scrap paper dropped out, it was all-stop to read and reminisce. In 2015 after the hardware in Madison's neck wore a hole in the back of her throat, she was robbed of normalcy yet again for another semester, couldn't swallow, and had some extreme new scaring. During her recovery she was laser-focused like a Jr High School kid going to a dance but focused on a big zit... that's all they see in the mirror. Madison worried about her scars, then got past it. She wrote:

"I feel the most beautiful when I make people laugh. I feel beautiful when I am giving.
I have a beautiful body. I won't ever say 'even with scars' because they are a testimony of strength. There's nothing to qualify.
I am my own favorite song that I'm just now learning the words to, but I want to sing to you until the song sticks"

And to Quote Madi...

1/24/2018

Gutting Madison's room to paint it wasn't too difficult, all things considered. Deciding what to keep is far easier said than done. Madi had stacks of college notebooks and while skimming through some to determine if they're keepers, we noticed some self-reflections. In one notebook she wrote "I might not be like other twenty-something year olds. I might not be as far along in my education or starting a career. I might not go to Coachella and wear a tube top made out of yarn and look amazing doing it. But I can talk to a woman who woke up from surgery with one breast and is falling apart. I can meet the girl whose father has stage IV cancer where she is".

And she did.

Heads or Tails?

1/23/2018

As you're aware Madison earned her angel wings: both a sad inevitability and a beautiful transition. After she'd passed and as the mortuary took her mortal body and drove away, her moms and I stood in the driveway and wept, a three-way hug exchanging our love and gratitude to one another. We gravitated back to Madison's bedroom and sat on the beds each silently wondering 'so what now'? Wanting to try and keep it light and seeing Madison's wallet sitting on the her dresser I grabbed it, pulled out the cash and said "heads or tails" as I flipped a coin. We laughed through our tears and mamabear Colleen said "your job was just eliminated... you need it more that I do". I put that $116 in my pocket but just couldn't put it in to my wallet... not even weeks later. If it was there it'd be way too easy to turn that in to a carton of cigarettes and a fine box of wine... which would have made Madison SO proud. So with that elephant still in my pocket, I just mailed a check for $116 to XMO Camps (at 3578 Claridge Court, Simi Valley, CA 93063 ; ) so off to the liquor store I go with a clean conscience!

So that covered the short term now-what. Moms and I need to redefine ourselves and our rituals as individuals and as couples... the what's-next? We've been the extremely proud, often terrified yet determined caregiver parents filled with faith and hope of a cancer patient since 2013 and that's been our primary role. We learned a secondary role very early in our journey together. After her first chemo regimen Madison was hospitalized with an infection... a compromised immune system and then bam... three days in the hospital which included Christmas eve 2013, that story here. We were so inspired to pay-it-forward by that act of kindness by complete strangers that we've been paying it forward since, Madison included in more ways than you probably know. In her legacy we'll carry that baton and invite you to do the same, to do good, to feel good... it can be as simple as donating blood regularly, throwing a few bucks towards a worthy non-profit regularly, donating your time serving homeless people a Thanksgiving meal, or even sitting at a Pet Smart helping organizations place stray cats and dogs. While the picture below reflects Madison's determination and playful character during treatment, stop and ponder where urgently needed blood comes from... walk-in's are often welcome. Don't think about it, let's simply do.

Love,
The Jones Family

Reevaluating Rituals

1/21/2018

Up until the diagnosis of a rare and aggressive cancer we led a fairly normal life. As parents we're taught to groom our children to become decent, kind, and hardworking human beings, and then send them off to college where they actually spread their wings having left the nest. For most 'normal' families that might mean worrying about toga parties, beer bongs, finding 'love' way to young, then dropping out of college to find oneself. We were both cursed and blessed... moms and I had four extra years with Madison. Granted she had something major occur each year since her diagnosis, but we had the privilege of being deeply connected to her through thick and thin, and her... to us. Many young adults might not even look in the rearview mirror at age 22, but we watched a terrified 18 year old transition during her first treatments, then blossom as a cancer peer in her group, and ultimately pack a lifetime of wisdom and spirituality in to just a few short years following. While Madi lives on and lives strong in our hearts and souls, what's actually next for us in her vacuum?

Puerto Vallarta. Angela and I have an opportunity to go ridiculously inexpensively, so we're planning a reconnection / what's-next retreat. Angela has been the-other-woman through all of this and while she certainly understood and has embraced what's most important as Colleen's husband has, we're each now positioned to reevaluate our day-to-day rituals redefining our roles on planet earth... life beyond being cancer parents/caregivers.

Per Madi's request, we had her mortal body cremated and they're in a beautiful wooden box. We talked to her about spreading her ashes at one of her favorite places in Ireland, Maui, or England.., "c'mon Madi... just tell us where and that'll give us a reason to go", but not even a nibble from Madi. So it's up to us: we've written about another 'service' and there will be something, but that seems and sounds so final but we all mourn her departure I do believe that we all need a forum to express our love and gratitude for hers, but the what and when are not quite yet in focus. Moms and I asked Madi if she wanted her cremated remains buried and again, she asked "what for". It was a very confident and spiritual reminder by Madi that her mortal remains may actually be somewhat insignificant in the grand scheme of things in His eyes.

A Farewell Letter by Holly Butcher

1/15/2018

A young woman named Holly Butcher recently passed away in Australia. Holly wrote a letter on Facebook that I think Madison would like us all to read, another non-Facebook link here. Many of us had incredibly deep conversations with Madison who also spoke extremely wisely about missing the woman she wouldn't be allowed to become, kids she wouldn't have... that she didn't want to go. It's truly an amazing parallel between these remarkable young women.

Until this journey started like many, we were mostly ignorant and afraid of life's inevitability... which is death. In 2014 during Madison's treatments I remember seeing groups of cackling girls in Boston headed to school. Unspoken then, we admitted later that we were jealous... our fears, anxiety, and insecurities had us thinking those lucky bitches. In the movie 'The Fault In Our Stars' we saw that same thing. Fast forward to last month knowing that Madison liked getting out of the house when she could and loved Jamba Juice: one evening we went in to the restaurant. Madi had a small oxygen tank and was sporting her red walker. She politely places her order, pays, and the young woman asks her name, and we sit down at a table. A couple of minutes later the Jamba Juicer called Madison's name and set the drink on the counter about 15 feet from us. We were literally the only customers in the restaurant and had to smirk at one another. Neither of us thought the Jamba Juicer was insensitive... just not paying attention to her surroundings and likely self-involved obsessing about something insignificant... perhaps just being pissed off that she's got the night shift again. What Madison or Holly wouldn't have given to have that night shift. Again, the Facebook link is above and a link for non-Facebookers too.

Dear Madison - Thanks for teaching so many of us to occasionally look away from Facebook and our phones, and to appreciate life, love, and the human beings around us... even strangers sitting in a restaurant or people in line at the store. We've learned that each day is truly a fragile and unpredictable gift, and to do something good, to be good, which makes us feel good. We all miss you immensely and we are trying to adapt to our new normal's without you here. Truth be told, Bailey maybe not so much. She was at your moms over the weekend and has since been trying to figure out what that giant thing is in the middle of your room here, why there are sticks on the wall, where you are... there's definitely something going on.

Will There Be A Service and What's XMO?

1/10/2018

Hello everyone yes, there will be something but we won't label it as a 'service'.... perhaps a Celebration 3.0. Looking back:

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.

Love,
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.

It IS a Hike to The Cross

1/8/2018

Last Friday night a bunch of us got together for dinner and spirits. Someone asked what our plans are for the weekend and I casually mentioned cleaning Madison's room to make room for the pool table, then pondering a hike up to the cross here in Simi Valley. Madison liked going there and I loved going with her. Every time we haggled whether it's a hike or a walk... pictures and about that conversation here.

Over the weekend the conversation about going to the cross spread, but on Sunday morning I finally conceded that I'm not yet up for toasting Madison's life with a group friends. Yet. They all went anyway, God bless them... I didn't know until I received the text message with pictures, and that's when the tears of joy flowed. The sunset was as beautiful as our friends... and I believe Madison was in it with them letting them know she's okay and in a beautiful place.

So Madison, I see backpacks... so it IS a hike to the cross, not a walk.
Love,
Dad

So What's Next?

1/7/2018

Hello Madison Family, Friends, and Followers,

SO many lessons learned, one of which is in the last month and the last week that Madison spent on planet earth. Observations and a conversation with Jan RN Madison's nurse, is forthcoming. Their bond was so incredibly beautiful; one example of many: There's a special medical supply that isn't available at any pharmacies. Jan RN was checking in with us to see if we're okay. We were down to one of these special bandages and out of the blue on Christmas eve at 11:45 PM there's Jan in her pajama bottoms and a down jacket: bandages for Madison and a hug for dad. Later the next week Jan was sitting on Madison's bed and both were looking at tattoos on the web. A couple of days later Jan RN sent Madison a picture of her arm and Madison showed dad. Wow, she did it. On Jan's wrist is a bracelet that has a lotus flower on it... Madison had given that to her. Something tells me neither one is coming off.

Friends and family who love us (who we love deeply) may be struggling some and wondering how her moms and dad are doing. Honestly with the disclaimer 'all thing considered', we're doing fairly okay. I think my grieving actually started in September, and that was also a month of celebration. I think Madison's started mourning then too. When she had the last CT done in early December... even more advanced progression along her spine, more reality in the Faith, Hope, and Reality equation. As Madison's therapist Tricia taught her "acceptance is not approval". That lesson/gift was of enormous value to Madison... to me too. This is not okay on so many levels... it just is. Through Madison's mourning and acceptance phases, she really did seem to mourn and then accept things as they continued to be taken away. Less than a week after losing the loss of her legs, she was at the It's just my legs stubborn determination phase.

We invite you to stick around here and follow Madison's legacy by bookmarking this site and checking in. We don't plan on updating Facebook regularly since that's last-in last on-top and 'likes' drive that timeline. Here we have a forum that isn't driven by social media algorithms. As the what's-next becomes better focused and we redefine our roles on planet earth carrying Madison's torch, you're welcome to tag along here.

Love,
The Jones family

A Friday Reflection

1/5/2018

I pondered sharing this photo but the more I think about it the more remarkable it became to me. A few weeks ago Madison matter-of-factly mentioned feeling like she's at a birthday party and that her Father was reminding she'd have to leave soon. During her actual transition yesterday there was a spectacular sunrise and taking the picture through the window didn't do Him justice. Bright bright oranges and yellows with some gray with bright whites, truly magnificent.

So coincidence or was He showing Madison the way?

(We don't believe in coincidence)

Madison Rose Jones - May 20, 1995 to January 4, 2018. And Beyond

1/4/2018

Hello All,

It's with a heavy heart that write to you about the end of Madison's Journey on planet earth, but certainly not her legacy. Madison earned her angel wings this morning about 8:30 AM. While very very sad, it was actually a beautiful and graceful departure. She passed away with absolute grace, pain-free, and without any agitation whatsoever.

Last night Madison's mom Colleen bunked in Madison's room. Madi's medical team trained us well: based upon certain observations with Madison we suspected that we may lose her in the next few days. About 4AM this morning Madi became a bit restless, an occasional norm in the wee hours. Dad got up and mom and I gave her the typical wee-hour meds based upon the what-if scenarios. Madison's oxygen level was low... 54% and over the course of sitting together in Madison's room, the pattern was obvious... her 02 levels were slowly dropping and Madison remained asleep for the duration. I woke up Angela, and both moms and dad sat in Madison's room and just spoke quietly to her and to one another taking turns holding her hands, with Bailey snoring softly on the foot of her bed. Despite her oxygen levels dropping and shallow breathing she knew we were there. We all held her hands and something I'll never forget, I just said "Hey Shug", I'm here with your mom and Angela: Madison squeezed my hand. Her 02 was really low but Madison's nurse Jan said one of the last senses to go is hearing. How true, we witnessed it. We each told Madison how much she has enriched our lives, how proud we are of her, quietly reminded her we'll be okay when she leaves planet earth and gave her permission to go.... " it's okay honey... it's not goodbye, but see you there". Over the next several hours we continued quietly talking to her. Her oxygen continued to slowly drop and her breaths were becoming softer, amazingly free of any agitation whatsoever. She looked so beautiful, so peaceful as she was dismissing her mortal body, and then she simply stopped breathing. We knew the mind can stay 'on' for up to five minutes after mortal death, so we sat there for a short while speaking to her. Since a doctor or nurse must officially pronounce someone 'dead', I called the nurse and Colleen and I dressed Madison in her new French Bulldog pajamas... so cute, beautiful in fact. Madison's facial expression this morning appeared to me as if she was a young kid pretending to be asleep. I couldn't stop staring at her... she looked that beautiful and peaceful. Today was both a tragic inevitability and a beautifully graceful exit. You can see a brief video celebration of her life at this link.

Oh Madison... we are all so very proud of you on so many levels. Your bravery, kindness, compassion, tenacity, spirit, spunk, and love have been an inspirational gift to so many of us. You have taught us how deeply we're actually capable of loving, living, how brave and kind we can be, and those gifts from you to all of us has changed the trajectory of so many lives and relationships... relationships with ourselves as well as with the other people we touch in our lives. We will miss you, this won't be goodbye... we promise you that. We'll be together again...and that will be beautiful.

All of our Love,
Dad, Moms, Family, Friends, and Followers

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