The title of this post may require some explanation. We still refer to 'Madison's bedroom' as exactly that. We tried rebranding Madison's car to 'The Camry', more here... I just didn't like rebranding Madison's stuff and disliked driving a low and slow four cylinder car... her car.
I'm going to keep this very brief... well, I'll try but first, a story! My best friend growing up was Gary, who helped me all day yesterday. Gary tragically and suddenly lost his wife Becky about seven years ago. It was great reconnecting and spending with him! Prior to yesterday, "Madi's bath" was an empty room that had fresh wiring, tile flooring, fresh paint on fresh drywall, new recessed lighting... but completely empty. I wanted to finish Madi's bath prior to Christmas, but there was a lot to do. Rewinding:
In late October we made a trip to NJ, them NYC the DC... 15 days total. The purpose of the trip was to celebrate Carolyn's 90th birthday. She was the den mother/mentor that Angela lacked in her life from the 1980s to current. It was a great trip and we returned home mid-November. A week later we received a call that Carolyn was in the hospital... trouble breathing. The following Monday it was determined that Carolyn's O2 levels we so low, she couldn't return home and needed commercial oxygen... tanks or a concentrator would not suffice. The following Monday Carolyn decided she'd lived 90 years; a good long run but it was time to 'go'. Angela flew back out Tuesday and was holding Carolyn's hand that night beside Erica... Carolyn's daughter (and the sister Angela never had). Wednesday Carolyn's two sons and their families rotated through, and that day was all about Carolyn. She was alert, talkative, and it was a tearful but joyous day... if that makes sense. That evening Carolyn lost consciousness and passed away in the wee hours of Friday morning with Erica never leaving her side. With a memorial service/celebration in a week, there was a ton to do. Given Erica is the only local 'kid', there was an enormous amount of pressure from creating program, reserving a place, and getting food there. I could hear the anxiety in Angela's voice... there was a lot going on. Adding insult to injury, there was a gas leak at Carolyn's house the Thursday before the service... the place everyone would congregate before and after the Saturday service. The Gas Company did what they do... turned the gas off to the whole house which meant a freezing cold home, no hot water for showers, dishes, etc. Erika had to bribe someone to go to the house asap, find a gas leak with the gas turned off, and repair it. Now assuming it's fixed, she had to chase the Gas Company down to turn on the gas... which happened about 1am Friday morning. Angela was gone for two weeks, and about halfway through that I knew I had to surprise Angela with the bathroom complete.
With Gary's help, we did! Over lunch yesterday Gary and I reminisced about his (then) wife Becky, who I remember fondly from high school. I learned through Gary's lens that as a mother and wife, she used to kick his ass in tennis; was actually the first-place woman in a league they were in... "the one to beat". I'd heard stories about Becky as a wife, as a dedicated mother, an extremely smart business woman, and I really enjoyed hearing them and hearing Becky's name. Gary is so funny! We were up and down in "Madi's Bath" all day, and he casually mentioned "the older I get, the harder I grunt when I have to stand up from the floor". Huh! I do it too, never noticed. Changing gears...
I was at a bowling alley with some friends last Monday. A very close friend and I stayed late and had a glass of wine in the bar: she asked me how I'm doing, how am I coping, etc., and I told her. Last Friday Colleen picked up Bailey and we chatted about the conversation in the bowling alley bar with my friend. Yes, I feel robbed, and also blessed... we had three months to do bucket-list stuff, share stories, create final memories, and say our goodbyes. I don't feel I 'lost' Madison, but embrace 'having' her... as Gary embraces having had Becky. I talked about Madison... he asked questions, and he spoke of Becky. As I've written before, Madison's moms and I had her the four years she was supposed to be away at college, and we learned the depth of love we're actually capable of. So, if I tell you the story about Madison shooting an AR15 with her uncle Jeff again, please smile and listen if you've heard it before. If you repeat a story about something Madison did, I'll do the same... I love saying and hearing her name the same way I think Gary does with Becky. While he doesn't physically have her around, he'll always have her as we have Madison... in our hearts. I sent Gary that pic this morning, and I'm going to ask for some of Becky.
For anyone who hasn't yet contributed to the organization with a quest to cure chordoma and they will, and if you've enjoyed reading my slow-growing book on this site, please consider donating to the Chordoma Foundation (CF). How much would this journey be worth in an Amazon e-book or even a hardcover book... 10-20 bucks, please do it... anything! You won't be judged, you'll be thanked! If you have donated to the CF, thank you! If not, consider donating in Madison's name... keep her name alive. A little bit of something is a lot better than a whole lot of nothing. People who have followed along here will know what I mean when I heard a globally recognized chordoma researcher casually mention to another... "it's a good time to be a mouse". Another scientist (Patty at the CF) wrote to me that with Madison's cell line (the only one like it on the planet in 2018), Madison will rock the research world. I am going to finish the book, and 100% of the profit will go to the Chordoma Foundation... <- open that link... recognize anyone?!
Extreme Mobility: (<- Link) Their leadership, spiritual guidance, outstanding counselors/trainers, and blind athletes help propel Madison into the woman she became. I just donated to them at this link... same guidance applies; it doesn't need to be a lot and will keep Madison's legacy alive there too. If you already have, thank you! For any of her friends who want to be inspired and experience what Madison did during the five camps that she trained and led the blind kids, you can apply to be a volunteer. (psssst, Mallory... if volunteer at a camp you be "Madi's Cousin" as I was "Madi's dad".
...dear Madison: I think Gary likes and admires you through me, as I like and admire Becky... now more than ever. To surprise Angela, Gary helped me finish your bathroom yesterday. Every time Ringo wandered in Gary would say "Inspector Ringo is back"! When Gary or I got up from the floor, we'd both grunt, and I smiled... I do do that!