We Made A Bucket List

I have a bucket list.

I used to think such things were cliche and cheesy and what does it really do anyway? 

And then, at 24, I became a mom. I really wanted to be a mom.

In high school, on career day, I dreamt about lots of careers but in the back of my mind I always thought, but I’m gonna be a stay-at-home mom so I never really took those dreams very seriously.

One cold January day, my dream came true! The little baby boy I had prayed for came into the world. We were in heaven. 

A few days later, baby Jacob turned blue. He was three days old and stopped breathing.

Five days later the “blue baby” mystery was solved when he went into a status seizure and was sedated for 6 days on a ventilator in the pediatric ICU.

That wasn’t part of my dream; seizures were not in my plans for the mommyhood journey I dreamt about since playing barbies as a kid with my sister. 

The seizures continued, though we started to live around them.

Eventually, he needed a feeding tube… then brain surgery… a wheelchair… a tracheostomy. He got his trach when he was four.

Those first four years of his life were lived in a blur. A giant, ugly, black scribble blur filled with fear and unanswered questions. Anger. Frustration.

We were blessed with a second child shortly before his trach was needed, our daughter Elsa!

I remember thinking what the hell are we doing bringing another child into this chaos? But, God knew we needed her; all three of us, me, my husband, and Jacob.

She brought joy. As she grew, she taught us so much about love. 

Right around this four year mark in Jacob’s life, my husband Kirk and I were out for a lunch date. He said to me, “I think we should make Jake a bucket list.”

What a great idea!

Friends had done similar things for their medically fragile children and it was very cool to see their accomplishments.

We each started listing items we thought Jake would want to check off. Jake was non-verbal, but he certainly expressed himself.

And, so it began. Jacob’s List. 

I had a hard time calling it a bucket list.

At that point, we weren’t so worried about end of life and things like that. So, I started referring to it as Jacob’s list.

It included some little things like “taste ice cream”, “see fireworks”, “and go on a boat ride”… and big things like “see the ocean” (we live in Minnesota), “meet someone famous”, “see a movie location”.

Making Jacob’s list was one thing, but actually checking things off was a different game! We learned we had to be very intentional.

His list was long, but the things on it were doable, we just had to plan ahead and ask for help when needed. We started checking off items slowly, we were at a racetrack in Elko, MN for a race, drifting, and monster truck show and Jacob started to get very pale.

We packed up to head home and I called the pulmonologist who suggested we head to Children’s instead. When we got there, our handsome six year old went into hypothermic shock.

We didn’t realize how poorly he was regulating his body temperature and we nearly lost him but they we were able to get him warm again and get him stable. 

At that point we had already been talking about those big items. We knew “seeing the ocean” needed to be very intentional and very planned out.

We had discussed driving to the east coast in our big van and just bringing everything Jake needed along… essentially creating a traveling PICU.

We needed tracheostomy supplies, feeding tube supplies, oxygen, vents, suction machines, vest machine, cough assist, nebulizers… this list could go on forever. But, we knew we NEEDED to get on it.

We needed to go, soon. 

At this point, a friend of mine said, “You can’t go! What if he dies on your trip?!” I fully respected her concern then, and I still understand it now.

But, I told her, “We HAVE to go now. We can’t wait, if we are going, it has to be soon. It’s in God’s hands.”

After the hypothermic shock event, I knew none of this was up to us. We could pack up and go, prepare for every emergency, and still lose our son on this trip.

Bad, scary things happen to people every day. We knew we were taking a risk. 

On July 1, 2017, we set off in “Large Marge”, the giant gray converted van that belonged to Jake, for the East Coast.

We planned to check off many items on Jacob’s List on our journey.

We took a two week adventure and Jacob got to visit a movie location, climb the Rocky steps in Philadelphia, eat ice cream, and, of course, dip his perfect little toes in the Atlantic Ocean.

We found so much joy on Jake’s bucket list trip together as a family. We faced obstacles but we also learned that we are incredibly strong, resilient people…just like Jake. 

We returned and continued to check items off his list throughout the summer. A drive-in movie, a sidewalk chalk photo shoot. 

That fall came with some hard news. A rare genetic diagnosis and atrophy of Jake’s brain evident on MRI. It meant a shortened life for our little hero.

Not long after receiving this news, we had another hypothermic event, but made it to Children’s before going into shock this time.

That evening I had a long talk with the doctor in the ICU. She told me this probably wouldn’t stop happening.  Jacob’s brain was struggling to regulate his body. 

The next day, we started hospice. If Jacob was nearing the end of his life, we didn’t want it spent in appointments and medical procedures.

Hospice gave him freedom. Making the choice to begin hospice for him obviously was not an easy one, but knowing he would never be poked, put to sleep, or cut open for another surgery were calming blessings amidst the heartache.

Hospice slowed us down. It made us pause and take in every bit of every moment that we could.

We continued his list… he went to a Wild game, he had a rollerskating seventh birthday party for the books… we continued to fill his life with joy as much as we could. 

As you can probably imagine, the end did come. It came one early April evening in the middle of a snow storm. 

We made a plan for the end of Jacob’s life that included being with him, loving on him, singing to him, praying for him, and just being present… right in his bed in his Ninja Turtle themed bedroom… with the people who loved him most by his side.

Hospice prepared us well to understand what was happening to Jake’s body as he made the transition to being healed in heaven.

There were machines making noise, lots of sniffles, a comfortable, resting Jacob and eventually one big seizure and it all stopped.

Moments we will never, ever forget. 

Now, it’s been eighteen months. It still hurts like it did that day.

I still wake up wanting to hold. His sister can now say, “I miss my brother” as she is growing up and understanding what that means.

My husband keeps pictures of Jake everywhere and spends lots of time in his room. We grieve together like we loved Jake together. 

I often ask myself, what if we hadn’t made a list? Would we have gone on that big vacation?

Would we have met all the amazing people we met? Would Jake have had all those experiences packed into seven years?

I don’t think he would have.

I think Kirk’s idea gave us motivation and taught us to be intentional. I think the list helped us help Jake live a BIG life. A purposeful life. 

And, that’s why I have a list. I have one to remember my son, but I also have one to be intentional.

Bucket Lists aren’t just for people who are dying. I have goals and I want to reach them.

I might get 70 years and he had 7, I want to use them to change the world like he did.

Our children are strong and resilient, they can do such big things!

Some of my own bucket list items are to write a book about our journey with Jacob, to visit Australia with my family, to meet Ellen, and to make the world a better place.

This summer Kirk, Elsa and I went on a trip to New York City; we rode the Wonder Wheel at Coney Island together. It was on my list and it felt good to make that check mark. 

Everyone should have a list. Call it what you want, but I encourage you to make one.

Write down everything, even the things you think you could never accomplish. The biggest things.

We get one life, and sometimes it’s not very long.

Live it intentionally and with purpose, like Jacob. 

Written by, Kari Olavson

Kari Olavson is a wife and mother to two (one in heaven) and an advocate for those with special needs. She is cofounder of a photography based non-profit called Brave Souls Photography created in memory of her son, Jacob. She enjoyed sharing about Jacob’s journey through his life and continues writing and sharing as she can. Her first book about Jacob’s life, special needs parenting, and being a fierce mama-bear advocate is nearing completion and she plans to continue writing and increasing awareness of this special part of the world. You can follow her page on Facebook at Jacob’s Journey.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.