I started to write a post about my history with Mark and I couldn't stop crying. I was reading through some old posts that I'd written when he was sick and reading those just made me feel heartbroken all over again. I switched gears to write this instead. (Still about Mark, just a different direction)
Tomorrow will be seven years since I last saw Mark before he received his terminal cancer diagnosis. It was his last birthday that we'd get to celebrate because just a month or so later, we learned that he had stage 4 lung cancer. He died the following March--only three months after his diagnosis.
My last "birthday photo" with him. Halloween 2013:
I wanted to write a whole post about Mark: who he is, how we got to know him, what kind of person he was, and what it was like to visit him several times a week for the last few months of his life. But I quickly realized I can't fit all of that into one post. But his story needs to be remembered. HE needs to be remembered.
Here is a post that I wrote a year after he died, summing up the whole story in as short of a post as I could. I hope that you'll read it. (Gosh, I just read it for the first time in years... AND crying again.)
I wish he knew just how much of an impact he made in just three short months. And what a huge impact YOU made on him. When I asked my blog readers to send him cards, I couldn't believe the response! He received over 700 cards (I lost count quickly).
Mark didn't have any family that he knew (he only met his (adult) nephew--his only living relative--after he was diagnosed). We (my parents and I) fought to bring him to my parents house in hospice care, but because we weren't family, it wasn't up to us. His nephew chose to have them go through radiation and chemotherapy and put him in a nursing home. I'm really bitter about that whole story, and I don't want to make this a negative post, so I am not going to write about it. There is nothing I can do about it now.
I do want to say how much Mark appreciated your kindness! I tried to visit him every other day, so I was going to the hospital/nursing home 3-4 times a week. And I would stop at the post office to pick up his mail on the way--it was stuffed to the max into the PO Box I'd set up--and I read him each and every card while I visited.
One night, an amazing nurse took the time to staple all of his cards to the curtain that divided the rooms--it was full of cards! When the staff would go into his room, he pointed out the cards and said, "See all these people that care about me? I have ALL these people that care about me!"
I wish, more than anything, that I had done more with him sooner--before his diagnosis. I wish I'd taken him out for a good burger (he told me that one time he had a burger from Big Boy and it was "the best thing he ever ate!").
Living in the group home for nearly his entire life, Mark never really went anywhere "special". He loved coffee, and I started to bring him the "fancy" coffee from Starbucks. At the group home, he drank instant coffee, so I hoped Starbucks would be a treat. When I learned he loved strawberry milkshakes, I started bringing him one from McDonald's every time I visited. I wanted to spoil him rotten! And still, I felt bad that I hadn't done it sooner.
Mark was so grateful for everything that it made you WANT to do things for him just because it felt so nice to hear someone speak so positively. Not a single complaint. Just joy.
There are a few moments that I spent with him that I will never be able to erase from my mind. They're bittersweet as well. I'm glad I was there for him in those moments, but it was heartbreaking nonetheless.
One time, when he was in the hospital, I was there visiting by myself (sometimes the kids or Jerry would be with me, or my dad would be there, too). Mark mentioned going "HOME home"--meaning heaven. He said going "home" meant going back to his group home. Going "HOME home" meant going to heaven.
I asked him if he was scared about going HOME home and he started crying--sobbing. He said he was scared. I hadn't expected that. He was so positive about everything else, I thought that talking about seeing his parents in heaven would make him feel good.
And because I'm a crier (I cry at pretty much every emotional moment, even during the feel-good ads on TV), I started crying with him. I did my best to to tell him it was okay, but I told him that it was also okay to be scared. Mark understood a lot more than people thought he did. I didn't even really realize just how much he understood until that moment.
Speaking of the kids visiting with me, look at this sweet note that Eli wrote me one day!
Another moment I'll never forget was the last time I ever saw him--not because it was the last time, but because I saw, in just a flicker in his eyes, that I'd made an impact.
He was at his nephew's house (just for the last few days of his life) and I went to visit with my parents. Mark was propped in front of the TV, which made me upset because I knew he'd rather be talking or just sitting outside--even in the cold March weather--than in front of the TV. We talked to him the best we could, under the circumstances.
When it was time to leave, I gave him a hug good-bye, trying not to cry (as always, haha). His eyes seemed empty, like he was looking through me instead of at me. I said, "I'll be back in a couple of days to visit again. I love you."
And when I said that, his eyes came to life. As dramatic as it sounds, I can't really explain it any other way. He seemed to really SEE me then and it shifted his mood. He perked up.
I thought about that look on my way home, and it hit me that the last time he probably heard the words "I love you" was when his parents were alive--and that was when he was so young, he probably wouldn't have even remembered.
The next night, Mark went HOME home, just after midnight. I wish I could have been there with him, but I didn't have enough notice to get there.
For his funeral, I made collages of photos that I'd taken over the last three months as well as photos that the group home had given me. I also took all of the cards he'd received and punched a hole in the top left corner, then bound them in groups with a metal ring. I laid them on tables around the funeral home so that the few people who were there could SEE how loved he was, even if by strangers.
This is what Eli wore to his funeral (he picked it out). I think Mark would have loved the hat! :)
When the minister asked if anyone would like to say anything about Mark, I told the story of Mark's cards--how he'd gotten a little money here and there inside of the cards you all sent--and that I'd tucked it in an envelope for him to spend how he wanted. Eventually, he had a couple hundred dollars--so I asked him what he'd like to do with it.
He said that he'd like to have a party for the men in the group home, complete with pizza and cake. I arranged for that, and he still had money left over. So we made a gift bag for each of the men, containing little things from a "wish list" that my dad had gotten from the home.
The day of his party was a great day--Mark was able to walk (using a walker) into the house. He got to visit with all of the residents. And they celebrated Mark's visit with pizza and a special cake that I'd ordered from Monica's, my favorite bakery.
I spoke of how that party showed just what type of person Mark was. He had more spending money than he'd ever had and when I asked what he'd like to do with it, he wanted nothing more than to go home and see his friends, treating them to pizza and cake.
I still think of Mark frequently, but especially on Halloween. It's kind of funny, actually--it wasn't until Mark was in the hospital and we could read his hospital bracelet that we learned his birthday was actually November 1. Mark always thought it was on Halloween. And to my family, it'll always be on Halloween ;)
Tomorrow, Jerry and I plan to hang out in the "man cave" in the garage, passing out candy to any kids that may come. On a "normal" Halloween, we get about eight trick-or-treaters... with COVID, maybe we'll get a couple? I bought 12 full-size candy bars just in case, so hopefully we get to hand them all out! Haha. Jerry and I can play a game and watch scary movies. I'm actually looking forward to it!
Here is one of the photos of Mark that the group home had. I love it! I'm not sure when it was taken, but he was clearly having a blast doing the limbo ;)
