Scarlett came home from school recently with two fortune cookies to celebrate the Chinese new year. The first one said “The best times of your life are still ahead.” For her, at age almost-seven, this is of course true. But it made me wonder, at what point do you get to the place in your life where it isn’t true anymore? I am probably there myself. Although I still have good times to look forward to, I think it’s safe to say the best times of my life are actually behind me. Which is something I didn’t expect to be saying at the age of 38.
The best times of my life were probably when Scarlett was young and I was still mobile. When I thought I had years and years ahead of me to experience all that life offered to an able bodied, active, and adventurous person. The best times of my life should still be ahead of me, but they aren’t, because I can’t move and I am no longer an independent woman.
Scarlett and Rob are skiing in Lake Tahoe for four days. I’m staying home, and although I know that’s the right decision, it’s not the way things should be. The best times of someone’s life should be with family and friends, and should not include skipping a family vacation because it’s impossible to sleep in a hotel bed. For Scarlett’s recent mid-winter break, we drove to Los Angeles and went to Universal Studios. Harry Potter World, Jurassic Park, and a particularly fast roller coaster at Revenge of the Mummy that Scarlett is still talking about.
“They suck out your soul,” she tells anyone who will listen.
She rode the roller coasters over and over again, because when your mom is in a wheelchair, you don’t have to wait in line. I think the trip was one of the best times of her life so far. Every day, she told us it was the “best day ever.” And we did have a great time. But for me and for Rob, it was hard. I couldn’t sleep, which means he couldn’t sleep. For three nights. So maybe family vacations are a thing of the past, some of the best times of my life that I will not get back.
We went to Hawaii when Scarlett was 12 weeks old. To Florida when she was one and Santa Barbara when she was two. We went to Tahoe whenever we wanted. I held that little munchkin next to a sparkling pool in Maui, and I thought everything was right, that the future was rolling out in front of us like a red carpet. But the carpet bunched up somewhere along the way, and I fell down. And now, when I look forward, I don’t really see a clear path to anything.
Maybe this Tahoe trip will be the best time of Scarlett’s life so far, until the next wonderful thing that happens. I know that she has so much to look forward to. But in a way, maybe I do, too. Maybe it’s true for everyone that the best times are still ahead, because everything behind you is over and therefore only a memory. If the memory is the best time of your life, then you’re probably not really living. So I’m going to go with that theory for now.
Still, I’m lonely without my family. I find myself staring out the window at the rain, and wondering if I can get away with posting a blog that is simply made up of quotes written by other people. I decide no, not because it would be cheating, but because it would be more physically challenging to copy and paste than to just dictate my own words. it’s funny what you see when you stare out the window for a long period of time. I was thinking about Scarlett’s fortune cookies, and zoning out on the tree in my neighbor’s backyard, and suddenly I could see my grandpa’s face in the leaves as clearly as anything. His glasses, his vibrant eyes made serious by the weather. Papa died when Scarlett was one. He never knew that I was sick. I watched his face for a while, but when I looked away, I couldn’t find it again.
There are a few ways to think about this. One: I am by myself and beginning to go crazy. Two: my grandpa now actually lives in a tree outside my house. Three: my mind, in its quest for comfort, settled on someone who always made me feel safe and reassured. Someone who always made me laugh.
I went back to thinking about fortune cookies. The second one Scarlett brought home said simply, “You crack me up.” It’s a good line for a fortune cookie, and I think my grandpa, King of Corny Jokes, would have appreciated it.
Back to All Posts
Hoping against hope for a cure and better times ahead.
Hotel beds are the worst, agreed! Recently we went to Disney world and we rented a hospital bed from a home health company, they delivered it to our resort and the hotel set it up! It was great! We also rented a potty chair, im not sure if this is an option everywhere but i bet it is! Look into it!!
Your grandpa’s in the tree. I know, because my beloved mother-in-law is in the living room chair that used to be my favourite. <3 (I mean, not literally, we didn't have her stuffed or anything). I'm glad you had that comfort moment.
I swear I wouldn’t roll my eyes if I could experience your tree moment just once.. Think how happy you’ll be when your family gets back full of stories to share with you. Love always, N
Next time your family goes on a trip, let me know. I’ll come out,
we’ll have a manhattan and toast the Papa tree! Miss you both so much.
One of your best, Sarah ♡
Loved reading your story today Sarah as I lay in bed recovering from a severe mouth infection. For a brief moment I could connect in a tiny way to your life as I also stared out the window hearing the cars rush by and the clock tick. I pondered over Scarlett’s fortune cookie and couldn’t help but think that the best days of our lives ‘ahead’ are today and tomorrow and not necessarily far in the future. I’m touched and inspired that you made the trip to LA despite the challenges and weaved incredible magic to create a memory Scarlett will treasure forever. She’s one lucky girl to have a beautiful soulful mother like you.
So this is going to sound weird. Maybe even mean, but as God as my witness it isn’t meant to be. I am un diagnosed. I have symptoms, but as of yet I am not diagnosed. I am going with my family on a cruise starting tomorrow and I am going to go in the ocean in Key West and Cozumel. Although I have never met you, I find myself transfixed by your blog and almost feel like I know you. I am going to go into the ocean, I am going to say your name, I don’t pray, so I can’t help you there, but I am going to bring you in the ocean with me. I am then going to send you a picture on your twitter of that time when you went to the beach in Cozumel and Key West with a random chubby guy and his family.
What you are going through is the worst. Especially with a little girl (I have an almost 4 year old boy) .. I am sorry you got such a terrible break, and I hope you enjoy your beach time in Florida and Mexico.
Greg Pellegrino
Twitter: Pellman11
I am reading your blog because I just watched a Macy’s commercial in which an incredibily vibrant and athletic woman was switching from sport to sport and from activity to activity. As always when I see such women depicted, I thought of you and arrived here. The life story you have shared has created incredible, indelible images of the Sarah that was and will always be. You are amazing! I love the life you are creating for Scarlett … it’s magical and she shares the magic with the neighborhood. In the future, anytime Rob and Scarlett head off on an adventure, please give us a call. We’ll show up with a bottle of Corison and memories of grandpas, grandmas, moms and dads, all of whom are watching over us with love.
It’s tough
You deserve comfort. Keep writing.
Sarah, I read about your story in Quest Magazine and have been following your journey ever since. I wish I could provide you more comfort but please know your writing brings great meaning to a lot of people. You are a hero of mine!
Chris