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"Alexa - Play Bird Sounds"

3/27/2018

 
What amazes me is that I don't feel that Madison really 'died', perhaps a self-defence mechanism of sorts. To me she's just gone for now... anyway you know the drill... we'll all reunite, that I know. Going in to the Chordoma Conference in Boston last week, I initially added the (proud) 'parent' badge on my nametag... and then it happened:  
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One gent approached me introducing himself, I introduced myself, and he asked me about my role as a parent, is my kid here at the conference, etc. I generally outlined her 2013 diagnosis and treatments, then he asked if she was here. "No, she couldn't make it and I  quickly changed the subject and asked about his connection to chordoma as a caregiver (on his nametag). He shared, then zeroed in on how my daughter is now. I've seen those sad faces... people feel so guilty for even asking, and he did expressing his condolences and apologizing for asking thinking he struck a raw nerve. To say I'm proud of Madi is an understatement and her moms and most here would agree. I've love to sit down and tell him about her wisdom, bravery, faith, and tenacity but time wouldn't allow it. He approached me later again apologizing again for asking. I wouldn't have been at the conference had I not been mostly very okay. Moms and I are pretty okay, all things considered. In an effort to avoid the same thing from happening again, I slipped the "parent" label up under my nametag... should have known better, but we'll always be her parents. 

The Chordoma Foundation conferences are truly outstanding, lot's more at this link. Below: the top picture of the patent/caregiver community that attended and below that, a picture of chordoma expert physicians and researchers who traveled in from 12 countries for the Scientific/Research workshop that preceded the patient conference. A-freaking-mazing that at each conference so many experts are laser focused how to treat this rotten disease, truly remarkable and unprecedented for such a ludicrously rare disease. One of the researchers received an award and at the podium he commented on the fact that seeing so many people impacted who are so involved further inspired him to do more. Amazing!   
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Now, get a look at all of them, all the specialists and chordoma researchers... wow!! 
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I'd written before about the Amazon Echo gadgets we bought, one of which is still in Madison's room. I'd also written about the lesson she was taught by a blind friend about closing her eyes and absorbing the sounds and smells without any visual distractions. Madi told me about it and I still sit in the backyard having coffee and just listen, picturing where and what type of birds are singing in the mornings. That said, Madi and I learned that the Echo device plays bird "sounds" and chirping, but if you say "play bird music" you'll get 'Hey Mister Tambourine Man' by the Byrds, so we fiddled and adapted. It was actually quite peaceful in her room listening to birds chirping. I found that she often chose that over music. So here's where it gets really wonky but I'm putting it out there nonetheless.

Our friend and chordoma warrior Irith asked me if  saw signs or have dreams that include Madison. As I'd written here, that was one. Another... I had misplaced my glasses, gone for months. When picking up Madison's ashes from the funeral home I decided to take her car to keep the battery charged. I figured the safest no-tipping over place for the ern was on the floor of the backseat and bam, my glasses were right there. Another: when I went to the Verizon store to turn in Madison's phone, which took 30 minutes while they figured out how to no-charge cancel her phone contract. At the counter where I was for the duration, speakers with crosses on them. Hmmm, Madison always encouraged me to get more deeply in to faith, but what kind of speaker logo has a cross?! 
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Oh, so the wonky and I've only told a couple of people about this, one of which was Irith in Boston. Madi and I met her and her husband Warren on a bus in Boston in 2016: Madison and I both immediately liked them a lot and we and ended up hanging out with them at a concert at the Common. After Madison passed in January I continued my ritual sitting in the backyard with my coffee with my eyes closed absorbing the sounds, most of which were birds singing. I just asked Angela if she remembers me telling her about a bird sitting in the same place on a wire for about a week after Madison passed. She said yes. Oddly (?), the bird just starred at me from the same place on the same wire morning after morning I'd walk around the yard towards and away from it and it continued looking at me in the mornings over the course of a week. I found myself wondering if it was heaven-sent making sure I'm okay, and making sure that I know that it's there, and that Madison is okay. I teared up telling Irith... such a odd thing but as they say... the only truth is what you believe so there you have it. Again, I don't believe in coincidence. I suspect it went over to Madi's mom's house after that.

So the knuckleheads at Verizon sent me a bill for the balance of Madi's iPhone 7, just over 500 bucks. Having the picture above of the speakers and being date-stamped, I could tell them what day and time I was in the store, so they knew who was working, called the store and figured it out, then reversed the $500 charge for a phone I handed them then and there.  

I traveled to the chordoma conference last week a day early to reminisce. I took the train to MGH and had a great for breakfast ($4 included a milk), then popped over to Christopher's Haven, a place that provided a home for us when cancer hit our home. Their mission and small staff are awesome. I'm going to mail them a Team Christopher's Haven jersey Madi wore for a CH fundraiser back in 2014. From there as if Madi was calling the shots, walked up Charles street to the Common and then a casual stroll to Government Center. Okay, now hungry, jumped on the train and headed to Harvard for lunch... where else, Chipotle for a bite and a quick picture. While it may sound like a sad day, it wasn't, not in the least! It generated memories of some very happy times and how proud moms and I were of her... still are!
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The conference was incredible, as was meeting online friends (chordoma family) for the first time was very touching!. More on the conference in a future post. 

Hiya Madi - We all missed you in Boston this year. If you were measured by how much you were admired and loved, you'd have lived forever. 
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Love, 
Dad
P.S. Thanks for sending the bird down after you left, nice touch Shug. I'm betting the bird was over at Brookberry Lane too :-) 

Should I Have Something?

3/19/2018

 
We appreciate everyone that could make it yesterday, thank you... it a wonderful afternoon, great meeting a few new friends, seeing all of our peeps, and even seeing old friends/colleagues from back in my IBM days. There were also a couple of chordoma peeps here.  They had more common variations of chordoma (versus 'pediatric' and yes, that's Madi in the front row in that clip). Nick is kind soul who wrote the letter to Madison that I posted here. 

Link updated April 6. I learned that if people are not signed in to Dropbox, they may only see 15:00 minutes of the 19:15 minute video. I uploaded it to Google Drive too, link here if the one below cuts off at 15:00 (versus 19:15). 
Our friend Bambi edited the music and added-on to the original video that she created for the September celebrations. I uploaded the revised video at this link, a very special gift, thanks again Bambi! The last several minutes are from the September gathering and the last minute is video of Madi at the church celebration at The Place back in September. 

During the celebration yesterday Angela suggested we start the new video, but there were too many people here to try and gather everyone in one room to view it, so we just played it the one time for people who happened to be in the family room. 
Angela and I both circulated around the different congregations of family and friends inside and out, but there really wasn't a good time or place to rap a spoon on a wine glass and give a toast given there were so many people if different places in and outside. Laying in bed last night I kept pondering whether I should have tried to get 60-70 people in one spot to say a toast and to show the video. So, to our friends who know us well and Madison has heard it dozens of times: "there are big ships and there are little ships, but there are no ships like friendships". We love you. 

Love, 
​Chris and Angela
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Hi Madi, 

All things considered mom's and I are doing pretty okay. We miss you like crazy and there was great turnout yesterday to celebrate you... I think a bit more closure, perhaps for everyone. I think moms and I are doing better that most people think we might be. As I mentioned to Aunt Sara and Uncle Ricard today, we had years with you that most parents don't get. Had you been taken from us suddenly, we'd be a #$%^ mess. A reminder to embrace people you love, and say it often, live large and laugh.    

As you were aware I head back to Boston this week for the International Chordoma Community Conference. Just like the USC in 2015, MGH/Boston in 2016, and ​XMO this month, I'm best know as "Madi's dad" (versus Chris :) because of the profound impacts you had on people. What a proud badge to wear, thank you for that! 

Steven and Joni graciously printed and mounted these pics. Several people wrote things to you on the bottom one: I'll figure out how to bring that with me when we reunite. We all love and miss you Shug. 

Love, 
All of us
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​P.S. I forgot to mention the award you received at XMO in Colorado, the John McRoy Vision of Faith Award for your extreme support of XMO... their vision and mission. You'd be proud: I was asked to accept this prestigious award on your behalf and almost made it through without tearing up. 
Love, 
Dad 
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Remembrance March 18, 2PM

3/8/2018

 
Hello friends and loved ones. We're going to open our home up on March 18 at 2PM for an informal pop-in: everyone is welcome to come by and celebrate Madison's life at 971 El Monte Drive in Simi Valley. Questions if any, please email chris.j.jones@att.net

Love, 
Chris & Angela 

A couple of reflections: last September Madison was very selective about people who came to our home. When I tried to weasel more people in Madi reiterated that it was important to her having family and people in her everyday life here, envisioning an intimate gathering... I feel it was a gift to them. Madison added that Angela and I can have whomever we want at her memorial celebration. She wanted September for her peeps and then a final final for us. Of course my response was wait, what?! How many celebrations do you get?! 

​I'm going to keep changing the date on this post so it stays at the top. This will be the final celebration...

... until the Color Run later this year ;-) 

A Few More Thoughts and someĀ  more XMO Pics

3/7/2018

 
Given Madison's increased excitement over the five XMO camps she participated in, I had extremely high expectations and was still completely blown away! Add to that many of the trainers and athletes pulled me aside to share their fondness for Madi... it was very touching. Nathan, a BFF of Madi's wore her pajama bottoms and his snow boots to the early morning worship/meetings and also during a couple of evening events. (I learned that Madi wore those red Bullwinkle PJs and her snow boots during the XMO mornings). Funny... in San Francisco she wore snow boots with the hospital garb. Another BFF Marleigh wore something of Madison's at camp every day too. Both of these BFFs, #purelove. 

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I could go on and on about XMO. Where else can blind youth have the opportunity to ski, drive a snowmobile, go screaming down a hill on an tube and most importantly to me... learn from and connect with their peers and without their parents. I watched Madison learning acceptance with her cancer support peeps, and emotionally and spiritually at XMO. Last week there was an 18 year old who recently lost his sight. He  mentioned to me that his friends more or less disappeared, pun intended, his girlfriend dumped him, and he couldn't be completely honest with his parents because they would pep-talk him, try to fix him. At XMO he connected with tribal elder youth and even sang during the talent show with two Grammy Award winners, Jarrett and Alvin. They had both been asked to sing at the Oscars last Sunday but given the date conflict they chose XMO. This reinforces what I heard last night... whatever is in your heart is the only truth... it's all that matters.  

So last night: my mom and I saw a speaker at the Cancer Support Community, Michael Eselun. He serves as a chaplain at UCLA in the oncology unit. Madison, Angela and I had the opportunity to see him speak a couple of years ago, he's hands-down awesome! Given all of the treatments that Madison plowed through and Michael's credentials and experiences, I asked him a couple of easy questions during the Q&A last night: is there a heaven, do all things really happen for a reason, and do you believe in Karma? Simple enough, aye?! He's very eloquent: he reiterated that the only things that matter are to the degree we assign them meaning, and whatever is in our hearts is the only truth. Me? I believe in heaven. I believe there is sin in the world but cancer, blindness, and other tragedies are indiscriminate, all things do not happen for a reason, and Karma... yepper: I don't believe in coincidence.   
 
Dear Madi - we couldn't decide what to do with your remains in Colorado so I brought them home... I'll take a piece of you back to Colorado again next year. I was 22 once and understood you wanting to spread your adult wings, charitable and fun-loving nature at prior XMO camps without moms or me there... I was built the same way. You were right! The XMO experience was beyond incredible, and thank you for helping me give me back to myself. Love, Dad


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