“She was abnormal from birth, you just didn’t know it.”

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.

As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️


Perhaps it’s because I wrote furiously throughout the summer in order to finish my manuscript. Perhaps it’s because I now work outside the home and am forced to speak with guests continually throughout the day, using up my “daily word count” quickly. Perhaps it’s because, with Tori gone, my purpose for writing has changed and I still haven’t quite figured out what’s next.

Whatever the reason, I’ve been struggling to write lately. I haven’t felt inspired.

I want to write, I want to process life with my writing as I have always done. But, I’m simply unable to do so right now. It feels forced.

I rarely comment or post statuses on social media. I rarely blog. I think all the time and am constantly processing things; the difference is that I’ve been keeping it to myself instead of adding my words to a world in need of less noise.

I haven’t been doing this intentionally, but it has happened and I’ve been trying to figure out why. 

Perhaps it’s been my way of creating some stillness and peace in a world and a life so busy and chaotic.

Perhaps it’s simply a reflection of the peace my heart feels most days. 

Whatever the cause, I’m still here. We’re still here. Life is busy, mostly with good things, and we have some exciting things on the horizon. 

We’re preparing to move to downtown Hershey within the next month (!!) which will change so much about our lives – a drastically shortened commute time, becoming landlords, being part of a community that we’ve wanted to join for years, and being able to walk almost everywhere we need to go.

My friend, Jenn, and I are waiting for the official call that will start our LuLaRoe business and cannot wait to see what this venture brings! Brennan and I hope that this will help us fully fund our IVF and adoption expenses. You can check out our page here

Speaking of that, we hope to begin the IVF process (again) in the next month or so. We need $10,000 up front to start and we have raised $8,000! Praise the Lord! We cannot wait to be parents again. 

I am hoping that March will be the month for pitching my manuscript to publishers. 

We’re quickly approaching the one year anniversary of Tori’s heaven-going and aren’t sure how we will spend that day (March 27), but I’m pretty sure giraffes will be involved.

I’m hoping to find my voice once more and to write about life and seeing God work again. But, for now, I am being still (Psalm 46:10) and doing what I can to focus on the Lord and where He is leading. ❤ Good things are in store.

A Little Miracle

We received some interesting news today in a voicemail from Dr. Escolar:

She took Tori’s MRI to a neurosurgeon and it was discovered that, even though she does have extra fluid and high pressure in her skull, her brain “spontaneously perforated” and is “shunting itself”(or draining fluid) automatically. 

Tori won’t need to have a shunt placed and Dr. E doesn’t think we need to rush to see a neurosurgeon here. They just want to check her pressures in about two months.

While she didn’t say whether or not we could have actually gone to California without worry, we aren’t dwelling on that. She thought we went and said she hoped and prayed that all went well. 
We are going to choose to look at this as miraculous and focus on this miracle the Lord has done rather than focus or dwell on our disappointment that we likely could have gone to California after all. 
How great is our God! ❤️

Bingo Night Fundraiser 

On Friday night, a fundraiser was held for our family, and it was a wonderful fun-filled evening.

This fundraiser is just one of many examples we can give of God using this tragedy in our lives to bring people together, and an example of strangers becoming friends as they rally around our family to help however they can.

My mom is a Thirty-One consultant, and when Tori was diagnosed she had shared with her fellow consultants about the situation to ask for prayer. One of the consultants, Meagan Warehime, was particularly touched by Tori’s story and wanted to help. She lives only an hour away from us.

She contacted us months ago about wanting to do a fundraiser to help us out with our expenses related to Tori, and we were so humbled by – and grateful for – her request.

But Meagan didn’t just put together a bingo: she also blessed our family with a few surprises, including a gift basket, Geoffrey the Giraffe from Toys R Us (they don’t normally send him to small events like this, but Theresa pulled it off!), AND she encouraged my parents to fly in from California! That was the best surprise of all.

CBS21 also came out to film some footage of the event and interviewed Brennan, but I’m not sure that it has been on the air yet. I will post a link if one becomes available.

Altogether, she and her team raised $2,200 for our family at a much needed time, as our “Team Tori” fund was depleted in July by the purchase of “Tori’s Van” 🙂 These funds will be so helpful in January when our deductible will need to be paid once again. Thank you for relieving that burden of medical expenses!

The words “thank you” aren’t nearly enough, but we wanted to specifically thank Meagan, her husband Matt, their daughter Jenna, Vanessa Clark, Theresa Zikis, Ken Clark, and Terri Cook. Your hard work is so appreciated!

Thank you to the numerous sponsors who covered all the expenses of the event!

Thank you, also, to all those who came to play bingo! Your love and support for Tori and for us is overwhelming.

Here are some pictures from the evening, mostly thanks to my parents – I was so focused on keeping Tori happy (she had shots that morning and wasn’t feeling happy) and playing bingo that I forgot to take many pictures!

Tori’s Bucket List: See Daddy’s College (PSU) and a Football Game

Brennan graduated from Penn State in 2000 and is a proud alumnus of the university. He introduced me to the amazing experience of a Penn State football game a couple of years ago and I had never seen anything like it.

Naturally, this was quickly added to Tori’s Bucket List. 🙂

We spent the night in State College with a friend of ours last night so that we wouldn’t have to get up as early today, given that the game started at noon. We are so glad that we did that!

Tori experienced many new things today – chilly air (she was well-bundled up, of course), lots of loud cheering and music, and the contagious excitement that fills the stadium.

She looked adorable in her cheerleading outfit that was a gift in February from our friend Michelle Day and her family. Thank you so much for your generosity! The PSU blanket they gave us at the same time kept us very warm today.

In addition to all of this, Tori even met a Penn State student! We noticed that a young man in the student section directly below us was dressed up (for Halloween) as a giraffe! We had been talking to the security guard about Tori and he volunteered to go down to ask the “giraffe” to come take a picture with Tori. 🙂 And he did!

To make the day even more perfect, Penn State beat Illinois. A win is always more fun!


Tori’s Bucket List: Kayaking on the River

Since Tori loves being outside, and she seems to really like water (both being on it and in it), we thought kayaking would be a perfect addition to the bucket list!

Thankfully, Brennan has cousins – Sarah and Adele – who kayak frequently so they are practically pros. They helped us figure out how we could do this safely with Tori, since she obviously cannot paddle herself 😉

We also decided to do a unique family photo shoot while kayaking, since Brennan’s cousin Sarah is a talented photographer and we had been gifted a session with her (special thanks to Justen and Lisa McCollum!) – and it was SO fun! Sarah had never done a shoot like this before, and neither had we!

To reassure those who might be concerned about the safety of this activity: we put in at a location on the Susquehanna River that was fairly shallow and really calm. This allowed for us to safely have Tori in our arms while being towed by another kayak (thanks, Adele!). We didn’t go far because the river is really shallow in spots this time of year, but our little area was SO perfect!

It was another amazing bucket list adventure – and this one was on Brennan’s birthday, too! Now he wants to look into buying kayaks so we can do it more often. 🙂

Here are Sarah’s photos (click on image to enlarge):

And a few from my phone/perspective:

Thank you, Sarah (and Avey), Adele, Justen, and Lisa for making this possible! ❤

Tori’s Bucket List: Baltimore Aquarium

We had a great time yesterday going to the National Aquarium in Baltimore with Brennan’s family! This was the first time that his mom, siblings, significant others, and children had done anything together – hopefully this becomes a frequent tradition. 🙂

Though many of the exhibits were difficult for Tori to see (either because you had to look down at them or because the aquarium was rather dark in general), she was very alert and attentive throughout our visit and we did our best to find things she would enjoy seeing.

Her favorite thing was the wall in the cafeteria that changed colors – she was fascinated!

Thank you, Probst Family, for making this adventure possible for our family! ❤

Here are a few of our pictures from the day: