Everly's Bucket List

From the moment we were told the devastating news of Everly's diagnosis of Trisomy 18, we knew we wanted her to experience "life." Our goal from that very day was to get her out of the confines of the hospital and home with her family.

While we waited for all the necessary requirements before being able to leave, we began to think about all that we would not get to do with her. The thoughts were overwhelming. Debilitating. Depressing.

As the days went by, however, our mindset changed to suddenly what things we wanted her to experience and not what she could not do. We knew we could give her a taste of our life...the one she was born into and we wanted her to experience as much of it as we could. Everly's Bucket List was born.

See, we have been lovers of the "bucket list" for a long time now. For us, it's something to look forward to, work towards, embrace with joy and aspire to complete. It is not nor has ever been synonymous with death or anything of the like. We had a bucket list, and still do, for our marriage. For example, we'd like to hike the Grand Canyon together. We have a bucket list for what we would like the boys to experience or be taught before they leave home. We have a family bucket list of experiences we would like to complete together, like getting scuba certified. So, while we may be loosening the constraints of the title, bucket list, we have used and loved them for years. Several years ago we found tiny silver Dollar Store buckets that we have put slips of paper filled with the list items that we use to actually symbolize the proverbial bucket.

Now, I know what some of you about right now are thinking...how can a newborn or infant have a bucket list? Am I right?

Well, it's simply like this: part of Everly's Bucket List is the experience she would have doing various activities, like feeling the sunshine on her face or hearing the sound of the waves. But other parts of her list, like being in the midst of her brother's nerf fight or hiking on the AT, is important to us because it's a important to someone in our family. And in those cases, we get joy from having those moments with her.

At the end of the day, this Bucket List is about creating memories of our life with Everly. It's joyful. It's life-affirming. It's anything but sad.

When we left the hospital we had a very short list, maybe 6 things. One at a time, we checked them off the list. Feel the sunshine. Check. Go for a walk. Check.

Until those things were all completed.

We added a few more things. As it was now Easter, we added some new Bucket List items like get an Easter basket and go to church. Check and check.

And so it continues to go.

We discuss as a family what will be placed on her list and then we proceed with checking them off.

I still remember the giddiness I had late summer when I realized I was actually thinking about her Halloween costume, then Thanksgiving and unbelievably, Christmas!

So, more list items were added for each of those holidays and seasons. I never thought in a million years based on what the doctors predicted (congestive heart failure at 2-3 months with no option of a heart repair due to her diagnosis) that I would be looking ahead to these holidays!

So, Everly's Bucket List continues to evolve. And for that we are grateful.

Everly's Bucket List: Completed Items

Ride in the van to the house

Feeling sunshine on her face

Walking neighborhood

Go on a bike ride

Walk on the beach

Get an Easter basket

Go to Adventure Island

Hike Lake Rogers

Lay in each boys bed (they added this one)

Go Nana & Papa’s house

Look at a Mylar balloon (Daddy's wish)

Participate in boys nerf war

Taste whipped cream

Daddy/daughterdance (at her party)

Go“swimming” (in her bathtub at the pool with our water)

Go the mountains

Hike the Appalachian Trail

Hear rushing of a mountain stream

Have her nails painted

Play dress up (check, check AND check!!)

See Halloween decorations at our house

Go to family’s favorite restaurant

Attend church

Go to the zoo

Visit beach and dip toes in sand & water

Have a birthday party

Listen & watch the rain

Ride a ferris wheel

See fall colors

Everly's Bucket List: Not Yet Completed

Visit Atlantic Ocean

Go camping (may have to cabin camp or camp on our back patio this time) (Camping has always been a family favorite and one we do monthly between Oct-Mar.)

Have brother drive van with us in it (our newest driver!)

Go for a train ride

Have a tea party

Celebrate all family members birthdays (only two left on Nov.8 & Nov. 10!!)

Celebrate1st birthday!!!!

Ring in the New Year

Taste Nana’s Thanksgiving turkey gravy

Watch Christmas movies

Watch Macy’s Day Parade (It officially begins the holiday season in our house. No football here. Just the parade in all its glory! We are always glued to the TV.)

Pick a Christmas tree together (We buy real and it’s a very big deal when we go pick it out…we call Lowe’s days ahead and arrive when the truck from NC is due to pull in. One year, we were there when the doors opened and SNOW was still on some of the trees! So, it’s AN event to get our tree.)

Put up Christmas Decorations

Go see Christmas lights

See snow (maybe a white Christmas)

Go golfing or at least ride in the cart (for Papa)

Go to Disney World and be where everything is wonderful!

Have a meal with the princesses at Cinderella’s Royal Table at Disney (Very cliché but Disney IS the happiest place on earth.

**List subject to change as needed :-)

With love and appreciation,

Crystal, Jimmy, Garren, Kendan, Everly and Ala