No words have described our life better than the words my precious friend came up with when trying to tell our story.
We are, Fighting for the Fairytale. Yet, I have no idea how that story goes anymore. I can’t even close my eyes and dream of what I wish life looked like. It feels more like a ‘choose your own adventure’ book and none of my options seem that great.
Our greatest adventure may be a successful trip to Lowes to buy mulch. A few hours pushing our little girl lost in the gaze of the mega-store’s glaring overhead lights. That’s what you call a good day.
When you don’t have dreams for your life, you can feel surrounded by static. Sometimes I want to ask, What’s the point? We will never buy a house because no one will ever give us a mortgage on disability. It’s hard to know how much to put in your 401K when you have no timeline. How far ahead can you look? We can hardly plan for the future when we can’t even plan an afternoon.
A big outing to get a new car seat is quickly cancelled by a ‘bad day’. I plan naps and wash my hair because I know that afternoon we are making our big trip only to feel my heart fall when he physically can’t get the energy to go. I find myself wandering the aisles with a baby alone and it’s hard to think about our ‘fairytale’.
We’ve had some major changes in the last year. To think, just a year ago we were starting chemo, preparing for baby, planning for surgery. We were just jumping on this ride.
Now we are adjusting to life with baby, back to chemo and I quit my job.
In some ways, I think we’ve been like a lot of family’s who make the choice to have one parent stay home. A big cut to the overall salary means a harsh look at your expenses. Joe had a mix of a smirk and a glare– we’ll call it a smlare— as he looked over our bank account and read a never-ending list of purchases from Amazon.Com for oversized baby hairbows. So, I ‘unsubscribed’ from shopping emails luring me to the darkside. I made a vow to my husband that I will stop buying every Chevron top that crosses my computer screen. I tried to cry ‘Retail Therapy’ but he wasn’t buying it.
So, after the bearer of all things budget came down on me, you can imagine my surprise when I tip-toed into our room and my husband peered out of his half asleep eyes and said, “Do you want to go on a vacation?” He said it the day before our dreaded doctor’s appointment. The one where you get the results. The one where you know after the door closes behind the doctor, your life depends the words that follow.
“I was looking online and I think we can swing it.”
I couldn’t believe what he was saying but it was more than the expense. He has hardly planned beyond making it downstairs to get a Gatorade, let alone plan to leave the house for multiple days. I saw the smallest sparkle in his eye that I have longed for. There was just a glimmer of my old, spontaneous Joe. I saw the tiny bright spot people have when they talk about the future.
Do you want to make a plan? Do you want to dream a little? Do you want to go– somewhere, anywhere– with me?
So, we did it. We booked a trip.
The sad thing is, we’ve been embarrassed to tell anyone. Can’t even enjoy the happiness because we are afraid of being judged for how we spend our money. I guess it comes with the territory of pouring your heart out onto these online pages and opening your world up for anyone to see. With the generosity that’s been given to us, I worry we look foolish. It’s like when you live with your parents and on their dime, you better abide by their rules. But I’ve decided we need to claim the fight for our fairytale. I want the people who love us to know that they’re helping fill up the pages.
That night, instead of crying into our pillowcase as we waited for results, we booked a trip. We snuggled up watching videos of fireworks flying off of the Disney cruise ship. Our big adventure this week is making a trip to Old Navy to get Joe some new clothes that fit because suddenly he has a short term goal. A hope to be strong enough to get off the boat. An obtainable project. A dream to take his little family to see Mickey Mouse.
We have to be realistic and there’s no way we can travel alone. I can only imagine lugging the baby and luggage and carrying Joe on my back if it’s a rough day. So, the grandparents are going with us. I think they need it too after the year we’ve had. Suddenly, the whole family seems to be dreaming again.
My mom calls me to talk about what we’re packing instead of Joe’s health. Joe’s mom has spent hours in front of her computer exploring the insides of the boat instead of worrying about the next round of scans. We made a plan. We didn’t even buy trip insurance. We are going.
I hope you know how much you’ve helped us. I laugh to think Mira will go on a Disney cruise on her 6 month birthday. But who knows if we’ll have time to wait for her to be ‘old enough’.
You cannot live life, stuck. You have to have some type of future, even if that future will be here in just two weeks. You have to fight. You have to try. You have to grab the fairy dust and fly.