It has been a wild year for our family in many ways, both good and less-than-ideal.

2023 was filled with new challenges, most of which we have chosen to not share with many. These challenges now shape how we live our lives and the choices we make. Yes, I’m purposely being vague. 🙂

Personal Success and Growth

I had a great (BUSY) year academically and professionally.

I will graduate with my master’s degree in May 2024 and currently have a 4.0 GPA. That is unbelievable to me given all that we have faced since I began, and I am incredibly proud of this achievement. To celebrate graduation, we will be doing something very special as a family and I’m very excited about that.

For LDNBS, I developed strategic plans for state-by-state implementation of Newborn Screening for Krabbe disease and MLD. I also created a year-long social media campaign featuring one state a week, highlighting each state’s Newborn Screening successes and inadequacies specific to Leukodystrophy. I have become quite good at Canva and feel more confident in creating interesting infographics for LDNBS now.

As Director of Advocacy for LDNBS, I do my best to help other parent advocates feel less intimidated by the complexities of the Newborn Screening system. Our education efforts are part of that goal.

I have continued to give historical tours of High Point Mansion and we are still relief houseparents at Milton Hershey School about once a month (our twelfth year). I will begin giving tours of The Hotel Hershey in 2024.

Media, Speaking, and Writing Opportunities

I wrote an article for RareRevolution magazine and was asked to become a contributing writer for Rare Parenting Magazine. A NorCal magazine also shared our story and journey with Newborn Screening and Krabbe disease.

I was also featured (with Brennan) in a documentary about Tori’s life and was on national television regarding Newborn Screening. Finally, I was on the Hunter’s Hope podcast in April, talking about how we chose joy despite the tragedy of Krabbe disease.

On a whim, I also started writing a second book and am excited about its potential. This project was the result of procrastination on homework – why do an assignment when writing a book sounds more fun? 😉

I had the honor of presenting at four conferences (KrabbeConnect, United Leukodystrophy Foundation, Cure GM1, and EveryLife Foundation’s Newborn Screening Bootcamp). Brennan and I also had the opportunity to share our story at Forge Biologics, the company with a gene therapy in clinical trials for Krabbe disease.

I traveled to Chicago, Columbus, Minneapolis, Sacramento, Tampa/Clearwater (twice), and Washington, D.C. (five times) for advocacy-related meetings and conferences.

On top of all that, I rejoined the Hershey Community Chorus this fall and had a wonderful time. I participated in 2019 and it was great to use my vocal abilities in a choir once again. We performed twice in December.

Writing all of this out makes me feel exhausted and I’m sure I forgot things! Whew.

2024 is going to be another busy year with amazing opportunities and I can’t wait.

The Not-So-Good

I discovered in February that I have a form of PTSD as a result of Tori’s diagnosis and death. This has been unsurprising to those I have told, but it was a surprise to me because it did not manifest until this year (eight years post-diagnosis). This revelation brought me new courage to take steps to improve my mental health and to set boundaries to protect my inner peace. I am doing very well now and have identified my triggers.

In October, I was in a car accident that totaled our van (the accident was not my fault). We had hoped that our van would get at least 100,000 more miles, but that was all changed when a driver wasn’t paying attention and turned left into me after I dropped Brennan off at work. We are a single-vehicle family by choice and had just purchased our 2017 Grand Caravan in 2021. Now, we were forced to obtain a new-to-us vehicle at a much higher interest rate, bringing with it a higher car payment that was not welcomed. Yes, I am grateful to be uninjured, but this major financial setback has been difficult for us.

At the end of November, I had a kidney stone (likely as a result of all of the stress 2023 brought), which was indeed worse than labor as I have heard others say. I spent an entire day in the hospital and it took hours to bring my pain down from a 9-10 to a 0. My blood pressure was sky high, my body temp dropped to 94 degrees (hence the blankets in the photo below), and I could not believe how strong the pain was.

I am feeling amazing now, and I hope that I don’t quickly take that for granted. Those two days of excruciating pain and discomfort were enough for a lifetime, and it took me about a week to recover energy-wise. Zero stars, do not recommend.

Family

As a family, it was mostly a great year. We have grown a great deal and have learned to set boundaries to protect our peace, despite what we’ve been taught is expected of us. We even chose to spend Thanksgiving at home, just the four of us, because it was best for US. We’re learning that our peace is more important than the obligation to please others.

The Boys

The boys are thriving in school and continue to make progress with verbal communication thanks to the wonderful program at Lebanon Valley College and the in-school services they receive from our school district. They have been learning to use AAC devices to help them communicate with teachers and classmates and are learning so quickly!

We love learning more about their personalities and seeing glimpses of their intelligence (like when they switched places at school on purpose – yes, already! We can’t believe it.).

Travel

We had the opportunity to travel quite a bit this year as a family:

Brennan and I went to Punta Cana for my sister’s wedding and it was the first time we had traveled alone since the boys were born.

As a family, we went to Columbus, Tampa, Nashville, Ellicottville, and lots of local adventures. The boys LOVE traveling and experiencing new places! They especially love flying on airplanes.

I took the boys to NorCal by myself for eight days in August (Brennan was low on vacation time thanks to me needing to travel for work so much this year – so grateful for his support! ❤ He works so hard to provide for our family and will celebrate 21 years at The Spa at The Hotel Hershey in 2024!).

We saw lots of family, went to Lake Shasta, and had mini adventures when it wasn’t the hottest part of the day. The boys are SUCH great travelers and I plan to take them for an extended trip again next summer.

And then came the long-awaited first day of school for the boys! It has been so good for them (and me) to be in school and we LOVE our school district. Derry Township School District is always in the top twenty districts in the state and we can see why.

And, we had lots of fun at Hersheypark again this year. The boys LOVE riding rides and continue to be more adventurous! They do still expect Brennan to ride the trucks with them, though.

Brennan had the opportunity to attend a Philadelphia Eagles game with his best friend – it was the first away game he had attended. He also went to a Penn State game this fall.

Overall, we have had a good 2023 even though it brought some unwanted challenges into our lives. Life doesn’t look like we expected, but we are making the most of it and enjoying the life we’ve been given.

We are strong as a couple and a family and we look forward to continuing to grow in 2024. ❤