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.
We try.
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.
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Disney is AWSOME ,you will have a blast
The whole point of being alive is to live! I’m so glad you are living. I know we don’t know each other but I pray for a miracle for you every night. I hope you have a funtastic trip!
You are right to just try to keep on living no matter how hard it may be…God Bless your beautiful family.
Oh you guys, I can so relate. I’m so happy you are planning a cruise and have something to look forward to. You all need it and you deserve it.
We found out last month that my husband’s colon cancer has spread to his lungs and abdomen and now suddenly life is put on hold. We live and plan for his “good” days but can’t do much beyond that. Now we live from chemo to chemo and scan to scan. We’ve got a baby on the way, arriving in August that gives us something to look forward to for now, and I’m so thankful for that.
Go and enjoy every last second of that cruise!
Best Wishes,
Ashley
Asley I will keep you and your family in my thoughts and prayers too.
Awesome… So Happy you all get to go on a trip TOGETHER
PLEASE take Mira to the Bippity Boppity Boutique if they have one on board. I know she will be only 6 months old but every daddy deserves to see his little girl all done up like a princess. Please tell me how I can donate to make that happen!
Tracy,
This is Jen, a friend of Amanda and Joe’s. There are a few ways you can donate. The easiest is PayPal. Click here for the information:
http://cocktailchemointotheaisle.showituniverso.wpengine.com/how-to-help/
Thanks Jen!
I want to donate. Where can we help with the cruise or an outing?
Martina,
This is Jen, a friend of Amanda and Joe’s. There are a few ways you can donate. The easiest is PayPal. Click here for the information:
http://cocktailchemointotheaisle.showituniverso.wpengine.com/how-to-help/
You know what they say about money… You can’t take it with you! These memories will last you a lifetime. Good for you guys!
Have a wonderful time. I have been following your story since our daughter-in-law, Rachel, made us aware of it. I wish you all the best.
Go enjoy and make some wonderful memories
I have been where you are and I regret we didn’t plan an escape. Enjoy your trip and your dream – it will work more magic than all the meds!
This is such great news 🙂 . Nothing compares to a time spent together and creating new memories. Enjoy your wonderful trip. I cannot wait to see highlights from your trip and read yet another inspiring blog. Xo
So glad you’re taking this wonderful trip together. I hope you have an amazing time!
Awesome! Enjoy your dream and to heck with what anyone thinks or says. You deserve it.
Get it, guuuhhhlll!! This is a judgement free zone! And if you let me know when y’all are going, I’d gladly spring for matching, sparkly mouse ears for whole fam-damily 8:)
Mi Madre would agree: Disney is the happiest place on earth and the perfect setting for a fairytale 🙂 Have soooo much fun, Clarks, Evanses…Evan’s… Evensees?? Haha! So excited for you!
Good for you guys. Go have fun and enjoy your family time.
Good for you guys! I am SO incredibly happy for you that you are doing this! I hope you have a wonderful time with your families and that the sunshine and time away from your usual day to day help Joe feel great!!!!! Your words inspire me Amanda !
Live for the moment and don’t worry about what anyone says. You’re fighting the fight and no one else. It’s happy time that you both will have to enjoy and talk about for days to come. ENJOY!!!!!
If anyone deserves a vacation, it’s you and your family. Have a wonderful time. Prayers continue for Joe’s healing. God bless Joe and your family.
NO ONE should judge what you spend your money on. We felt the same way when our son had cancer… Must explain and defend every dime. Go, have fun, make memories. I’ll happily send you more money to do it again next week.
Dear Amanda, you are exactly right! The alternative to live entirely in worry and negative thoughts is horrible and not good for anyone! A lesson I have had to teach myself after personal experience! Your goals are not defined by how big or small everyone else thinks of them! They are YOUR goals, as long as you have some it`s always a good thing! When I was asked “how do you do it? Stay positive and strive to do what you can?” My answer as you know was “if my worry is can I keep a leg, and how will I ever walk/” Your stress might be,” can I cut the lawn befor it rains?” Your stress is your stress, its the same just the reason is different! The entire goal of life as I see it is to strive to be happier than the moment you are at! Risk vs reward, do what you think you can to potentially be happier, the attempt is a happy thing on it`s own! Thinking & praying often for you both!
Enjoy, you all deserve this soo much!!! Hope to see a few pictures of the good time!!
I can’t think of a more deserving family.
So happy for you! Have a wonderful time!! 🙂
I think it’s absolutely wonderful that you are doing this. Enjoy and don’t worry what others think!
Go and make memmories!!!
You go, guys! Have a fabulous, fantastic, incredible flight, yes, flight!!!
I also do not know you but pray for your family. It is hard to resist thinking about what others will think – so here is what we think – Fantastic, Wonderful, God Bless You, Have a Wonderful Time. Go in Joy and Peace. Each of us should live each day with the dedication to thankfulness you express. I pray your trip will be exactly what a vacation should be, and that you never give another thought to anything but the joy of spending time with those you love.
Enjoy!
I hope you guys have an amazing time on your vacation, I can’t wait to hear about it and see pictures. Enjoy and make sweet, unforgettable memories:))
When do you go my daughter and I are going on her make a wish we leave the 14 and we are doing the one that leaves from Florida would love to meet you and give you encouragement.
Kendra also has a chevron addiction…I keep telling her there HAS to be a support group for that! Still praying for you and your family and I am soooo happy you are going on a trip! god Speed!
You are such an amazing family and such an inspiration! Thank you for sharing and have an awesome trip filled with good days! #joestrong
i am reminded of a quotation that seems very appropriate:
“If, of thy mortal goods, thou art bereft,
And from thy slender store two loaves
alone to thee are left,
Sell one & from the dole,
Buy Hyacinths to feed the soul”
– Muslihuddin Sadi,
13th Century Persian Poet
May the “hyacinths” (your trip) feed your souls and give you joy!
I heard it first on a TV show said by Vincent Price….I never forgot hearing the words in his lovely voice. Then I read an article in Reader’s Digest about someone advising a young couple to take some of their hard-earned money, get a babysitter, and take themselves out for a nice evening and “feed their soul”. These incidents were back in the 1970s and I’ve never forgotten them and I always think of it when the hyacinths appear in spring!!
Go, go, go and have a great time. Your loved ones only want you to enjoy life and live it to the fullest! These memories will last longer than any money in the bank! My parents just took my entire family on a cruise to celebrate my own personal cancer journey. I am sure they would tell you that it was money well spent!!
If any family has earned a fantasy trip, it’s the Clark’s. You go and enjoy every minute with each other!
Amanda, My husband and I have been married for 46 years, and you two do have the fairytale marriage. Our life has consisted of, can we afford it, should be go out of our comfort zone, we need to be practical in all things. You own your life and dreams and you are making the most of all of it. God wiling you have many years together, but if not, you need not have any regrets. Go do what is good for your marriage, and if you don’t feel up to it, then that’s okay as well. Just make yourselves the most important thing, and smile about the memories you two made.
when i was going through chemo a few years ago, at the age of 29, i was contemplating a stupid purchase. but a friend said (and i’m pretty sure there are kitschy pillows and such with this phrase), “life is short. buy the bag.” ….and she’s right. cancer drains you in many ways, financially being darn near close to the top. but i don’t care. and i took her advice. i will never be a rich woman. at times, i might not even be healthy. but i am going to do whatever i want without however little i have because in those moments something inside of me tells me to “just go for it, figure it out later. or never.” and i never look back. and i never let myself feel any judgment. because if “they” truly love and support me, no judgment is ever passed. so, go on vacation. hell, even better? go on two.
I am so happy you are doing this … & as for the judge mental people phooey … GO ENJOY YOURSELVES..? live … Love & laugh … GOD BLESS YOU ALL