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!
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!
Now, get a look at all of them, all the specialists and chordoma researchers... wow!!
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?!
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?!
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!
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!
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.
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 :-)
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.
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 :-)
