Bucket List Living

What Having Vascular Ehlers-Danlos is Teaching Me About Bucket-List Living

What Having Vascular Ehlers-Danlos is Teaching Me About Bucket-List Living | www.therescuedletters.com

August 31, 2017

What Having Vascular Ehlers-Danlos is Teaching Me About Bucket-List Living | www.therescuedletters.com

“Prepare your bucket list and live your life well.”

-My Doctor

Almost two years ago, these were the words I received with my diagnosis of Vascular Ehlers-Danlos Syndrome. There is no cure or treatment for vEDS. And because the life-expectancy of someone with vEDS is cut short, bucket-list living quickly shifted to the forefront of my priorities once we had processed the ramifications of the diagnosis.

Which begged me to ponder: what exactly is my bucket list?

Summer Bucket List 2017 - 1 - www.therescuedletters.com (1)I had always thought bucket-list living was something you did when you retired. When the normal duties of adulthood supposedly relaxed into a slower pace of life, allowing room to explore all the things you put off when you were chasing responsibility. But living with a disorder that threatens to end your life at any given moment has a way of changing your perspective on what it means to actually live. And my bucket list definition quickly shifted from things I wanted to do in the far off future to choices I can make in the here and now.

That’s how bucket-list living became a thing for my family. Over the past two years, we’ve tried to make choices that honor what we hold most dear: God, family, and loving people the way Jesus would want us to. Basically, that’s our bucket list.

We’ve done bigger things like surprising Thomas with a last-minute trip to Disney World or taking an epic girls trip to Nashville. But what we are finding along the way is that it’s more about making daily memories than checking off a giant list. More often than not, our bucket list is found at the local ice cream shop or right on our back porch.

Summer Bucket List 2017 - 2 - www.therescuedletters.comFor us, bucket-list living is a perspective shift. It’s about making choices in the moment and cherishing the details along the way. Or as my grandmother likes to say: it’s about celebrating the extraordinary in the ordinary. We’re learning that life is sweetest in the simple moments and bucket-list living is about being present for all of them.

It doesn’t require an exorbitant amount of money. It might require you to budget more carefully to go after those big things on your list, but making a memory doesn’t cost a dime. What it will cost you, however, is intention.

A few months ago, I asked Thomas what was on his bucket list for summer break. I fully expected him to respond with things like: go back to Disney, travel across the world, or get a pet monkey. (Full disclosure: as a future primatologist, that last one actually is on his bucket list.) Here’s what he said instead:

  • go to the pool
  • play four-square with his best friends
  • snuggle and eat thin mints while we watch a movie

So that’s exactly what we’ve tried to do. In every day, we look for opportunities to connect with each other, to laugh, to make memories, and to love on our friends and family. We don’t nail it every day, but we’re getting better at making choices that fill our buckets. And it’s the intention behind those choices that define the list.

Summer Bucket List 2017 - 3 - www.therescuedletters.com (3)Jesus promised that He came into this world so that we might experience life to the fullest. And He is teaching me that even though I carry a scary diagnosis, the journey can be richer than any life I’ve ever known. The richness is found in those back porch moments, the Friday nights on the couch with thin mints, and the weekends we spontaneously decide that a road trip is more important than laundry.

This is how He turns our pain into something precious. We’re choosing to make memories and He’s filling us with joy. I never thought I would be grateful for having vEDS, but I find myself whispering thank you every time He shows me the blessings behind the burden. Bucket-list living is a lesson in gratitude. And when gratitude is present, bucket-list living is wherever you are.

It’s a sweet, sweet life friends. Go live it up.

John 10:10 | www.therescuedletters.com

This summer, my family and I made some intentional choices about bucket-list living. That term is something that became a priority for us when I was diagnosed with Vascular Ehlers-Danlos Syndrome, but the ways we've chosen to live it out don't always look like a traditional bucket list. Here's what having Vascular EDS is teaching me about bucket-list living. | www.therescuedletters.com #veds #ehlersdanlos #bucketlist

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  1. Tracey Walls says:

    What a beautiful post! I love seeing all your bucket list adventures – both big and small – on Facebook. Life truly is sweetest in the simple moments. I often find myself tearing up with gratitude when I look across the kitchen table at my children laughing over dinner, one kid encouraging the other or congratulating them over a job well done in school, the sight of seven sweet bodies snuggled on couches watching a movie, little (and big) ones climbing into my lap or pulling my arm around them as they lean into my chest, or the happy sounds of play in the the backyard as I clean up after dinner. These are the things I am most grateful for and the ones that I bring to mind and heart when days are more difficult. Life is so sweet and precious and I am so thankful for you, your heart, and your writing that remind me of that truth! Love and hugs!!!

  2. Sara says:

    Tears. A lesson a learned too late to live the bucket list kind of life with my husband but I sure am trying now with my girls. A great reminder to all of us. You are an inspiration.

  3. Lauren says:

    Thank you, Heather, for this gorgeous message. I really needed a pick me up today. LIfe is so precious. It is so important to remember the small moments and just be happy to have the time together. Big hugs my friend!

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