We Have Time

Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.


Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.

This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret. 

With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.

Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience. 

I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.

I’m so thankful for this gift of time.

When Jordan Hill Visited…

Somehow we neglected to post on this blog about our visit from Jordan Hill of the Seattle Seahawks in April! I was reminded of this when our story appeared on ESPN today, so I thought I’d write about that day for our own memory later.


We had been contacted by a mutual friend of Jordan and his wife, Cristen, asking if we’d be interested in adding “Meet an NFL Player” to Tori’s Bucket List  because Jordan had heard about Tori and wanted to come meet her when they were in the area visiting family. We set up the visit and it was about a month away.

We have joked that Tori must not have been a Seahawks’ fan because she decided to go to Heaven two weeks before Jordan and his wife were scheduled to visit. ❤

Once she passed, we didn’t expect to meet Jordan and would have understood if they had canceled their visit…so when he and his wife came over on April 12, we were so excited!

The ESPN article talks about the visit in detail and articulates the emotion of it all very well. Thank you, Sheil, for writing about our story and putting Krabbe back in the spotlight nationally!

Most of all, thank you, Jordan and Cristen, for your kindness and for honoring our daughter in this way. We will treasure the autographed shirt that you brought for her! ❤

Tori’s Bucket List: Sleepover

We decided to retroactively add this to Tori’s Bucket List because the sweet moment occurred before we created her List.

We had hoped to recreate this one with even more of her Krabbe buddies this July, but the Lord had other plans.

When we were at the Hunter’s Hope Family Symposium last summer, we had laid Tori down to change her diaper on a table and she fell asleep.

Gemma‘s parents put Gemma down next to her for a cute photo and she fell asleep, too! They had their first little sleepover! They even had an empty bag of chips with them, so the sleepover appears to have been a great success 😉

Every girl should experience the joy of spending the night with her best friends, so I’m glad that Tori and Gemma got to have this experience, even though they didn’t realize it was happening 😉

We love both of these girls very much and are looking forward to watching Gemma continue to grow and fight Krabbe valiantly. ❤

And with this, Tori completed FIFTY bucket list items. What an amazing journey we have had celebrating life with her in these little ways.

Tori’s Bucket List: Find Easter Eggs

Though finding eggs has nothing to do with the reason we celebrate Easter (the Resurrection of Jesus), it is a fun activity for children to do. It was a fun addition to Tori’s Bucket List that also got her outside on this beautiful day.

Tori’s Great-Aunt Becky and cousin Keirnan helped hide the eggs, and Grandpa Ken and Grandma DeAnne helped us carry her equipment around the yard.

We know Tori loves being outside and it was so great to experience such a classic childhood activity with her.

Tori’s Bucket List: Jump in a Puddle

One of the greatest childhood joys is jumping in puddles. It’s as if there is a magnet pulling kids toward puddles and they just have to play in them!

So, we decided that Tori needed to play in a puddle, too. We added this to Tori’s Bucket List, borrowed boots (thanks, Laura!), and waited for rain.

It rained quite a bit last night at our aunt and uncle’s home in New York, so we decided this was the time!

Tori liked the noise and her eyes were open the entire time. It was a fun little adventure for her. We love giving Tori these simple experiences that most children enjoy ❤️



Tori’s Bucket List: Attend a Tea Party

When Wendy Myers first asked me if Tori would like to attend a tea party, I imagined a small, simple gathering in a living room or backyard.

Never would I have imagined what actually happened!

Wendy and her friends created a beautiful night for Tori at the Hershey Country Club, complete with delicious food and creative handmade hats. They had photo booth props available to take fun photos and so many other creative touches.

Wendy also organized a silent auction with amazing donated entries and surprised us by announcing that we would receive all the proceeds from that to use however we’d like! Such a blessing in so many ways.

Brennan came along to the mother-daughter tea to assist with caring for Tori and he had just as much fun with all the ladies as we did. He’s such a great dad.

Our family didn’t plan to coordinate with our teal/aqua clothing, but it happened and we all laughed at our similar tastes. You’ll see our lovely attire in the photos below.

The best part of the evening – aside from a lovely evening with so many of our family members and new friends – was that Wendy brought her laptop and had it open to huntershope.org so that people could write to their legislators about enforcing Hannah’s Law!

You can write to your state’s legislators here, too!

Our local CBS station even included Tori’s tea party on their evening broadcast.

It was such an incredible, fun evening and we are so grateful to all those who made this possible. ❤

You can see all of Tori’s Bucket List adventures here.







Tori’s Bucket List: Join a Hockey Team

We were recently contacted by a woman whose daughter plays for one of the Hershey Jr. Bears hockey teams. She was touched by Tori’s story and said they really wanted to do something special for her.

She later contacted me and asked if they could make Tori an honorary member of their team and have a little ceremony to commemorate it. We were so excited! Brennan LOVES hockey and this was especially meaningful to us because we are fans of the Hershey Bears 🙂

They asked us to come to the rink before their game and two of the girls read a touching speech about Tori and Krabbe. Tori was then presented with a stick, a puck, and a jersey. She’s really part of the team now!

(photos below courtesy of Pam Huggins, one of the team moms)

(Photos below taken by Brennan’s sister, Kelly)

This same group is organizing a mother-daughter tea party for Tori and you are welcome to join us! We are so excited about this! Details are below:

Thank you to Wendy and the other parents who made this possible. Thank you to the girls for allowing Tori to be part of your team ❤