The Sludge
Confession: We just got back from Disneyland. Again. Our second visit since the diagnosis. Make no mistake, we are super careful to mask up, wash hands, take it slow, etc. But there is this part of me that is particularly satisfied at defying the chemo odds of bedrest by packing the car at 7:30 am, driving to Santa Barbara for my chemo infusion, and then continuing down Hwy 101 to tackle Disney.
Yes, I know. Crazy.
We arrived to the parks Wednesday evening just in time to secure a prime viewing spot for the upcoming parade, a favorite of Henry’s. We hadn’t been seated five minutes when a woman tapped me on the shoulder, handed me something, looked me straight in the eye and said, “I want you to have this, and tell you that you’ve got this. You’ve got all of it. Stay strong.”
As quickly as she’d arrived, she smiled and was gone, swallowed up into a sea of moving people. I looked at what she gave me. It was a beautiful black and gold bracelet, with letters that spelled “B-A-D-A-S-S.”
I was deeply touched at the kind gesture of a stranger who was moved by love and compassion to extend encouragement. (And, I believe, it is in these moments of exchange when God is most present.)
What an incredible way to begin our getaway!
It was our intention to rent those electric scooters so I could get my steps in, but also not overdo it. However, on our first day there, Disney had already sold out of the electric scooters. All they had left were wheelchairs.
Ugh, a wheelchair, I thought. As if somehow a wheelchair was more embarrassing than an electric scooter.
But we had no choice. So off we went, wheelchairing it across Disneyland resort to our main campout spot per Henry’s request, Star Wars Land. (Someone, please just give us a P.O. box in this place.)
“Dad, can I push Mom?” Henry asked. Bob happily obliged. We all giggled away as Henry oomphed and huffed his way up the hill, leaning into that chair with all his bodily might.
I snapped a picture… partly because we were all laughing, and I wanted to freeze time. But also, the whole image was so bizarre. Me in a wheelchair with my eight-year-old pushing me.
Never. Would. I. Have. Thought.
Strange, this new reality we are living.
Strange, these crazy moments that blur the lines all too early between parent and child.
Strange… that it is happening to us. I never thought, yet here we are. How many people have said that at least once in their lives?
We enjoyed another three days of our little getaway, full of laughter, treats, and lots and lots (and lots) of characters. I will sure miss these days when Henry ages out of his wonderment years.
Many people ask us, Why Disneyland? We have annual passes, so we go fairly often, and it is a relatively easy and affordable getaway.
But the best part about Disney is that when you’re in need of a distraction, Disneyland can truly deliver. And that’s exactly what we all needed.
While so many friends head to fun summer vacation destinations, we now officially feel like we are in the sludge… the daily routine of managing kids and cancer, one day after another, like an annoying Groundhog’s Day on repeat.
To be fair, “sludge” is a relative term. We’re still in the early stages of this journey compared to many I know who are two- and three years in. (I’m hoping upon hope that this time next year, I will be cancer-free, healed from surgery, and showcasing the finest fake rack I’ve always dreamed of.)
But it does still feel like a sludge. Our weeks are built around blood draws on Tuesdays, chemo on Wednesdays, and white blood cell booster injections on Thursdays, Fridays, and Saturdays. My energy is dramatically down, as is my creativity… which is impacting my ability to produce this blog. My brain feels like a scrambled egg and planning ahead or organizing anything is bizarrely difficult. I don’t have the energy (or desire) to create a nice chemo look each morning. Makeup? No thanks. A cute scarf? Hats are easier. Great outfit? Definitely no. Also, all I want is a good gin & tonic. Or a margarita. I’m not picky at this point. As long as it’s not a mocktail, which I’m definitely over.
So, yeah, it’s been a sludge lately. And as tired as I was at the end of our getaway, I didn’t want to come home.
So much of this journey, I’m finding, is about mental stamina. An intentional act of redirecting your mind into a place of positivity, being on the lookout for gifts of delight, notions of truth, and finding contentment in the stillness. Or sludge, whichever you call it on that day.
But the one thing I do notice, now more than ever, is that truly we are being taken care of. And it is shifting my desires.
We don’t have a fancy house but thank God, we do have great insurance.
We don’t own real estate, but my chemo is working!
We can’t afford elaborate vacations, but we know the encouragement of a strong community around us!
I have breast cancer, but I believe that this breast cancer spared me from ovarian cancer later!
My son had to push his 44-year-old mom in a wheelchair, but he will be stronger because of it!
I am learning – and deeply trusting – that all things fall into place as they are supposed to, that difficulties are gifts if we have the eyes to see them, and that God is lovingly involved in every detail, to my betterment in some way.
Sometimes it’s as obvious as a bracelet. Other times it’s harder to see at first. But that’s ok, too. It’s still there and still ours for the taking.
A few concluding thoughts for the week:
We continue to celebrate chemo every week, now on Celebration Wednesdays.
I can’t wait to have my best girlfriend from college and her dear family here for a visit this Friday!
I always have loved creating meaningful and memorable family experiences with Henry during Summertime. But my chemo brain is a scramble and makes it very difficult to plan anything, much less be inspired. It sounds silly, but I would love prayer around this topic before summer slips away and he is back in school in August.
Thank you endlessly for your love, support, care packages, words of encouragement, and prayer. It is appreciated beyond words.
Choosing joy amidst the sludge and wishing you Happy Summering.
With love,
Evie
