Saying Goodbye to 2016

Tori was physically part of our lives for parts of four years: 2013, 2014, 2015, 2016.

2017 will be the first year we will experience her absence, the first year we will have to say that she passed away “last year” and not this year.

We cannot stop time, nor would we want to do so. Every day that passes is a day closer to seeing our girl again in Heaven. Yet, at the same time, my heart aches as we enter a year she will never know, a year we are forced to experience without her.

2016 was a bittersweet year filled with transitions for us. To name a few:

  • Bitter: Tori went to Heaven;
    Sweet: She was healed from Krabbe.
  • Bitter: We sold our first home, the home Tori knew as her own;
    Sweet: We paid off Brennan’s student loan.
  • Bitter: I was left without a “job” as a mom, a role I treasured;
    Sweet: Finding a new position where I see Brennan and other friends daily.

While it is difficult to say goodbye to 2016, we are hopeful about 2017 and all that is on the horizon.

In 2017, we hope to:

  • Buy a house in Hershey (March) – can’t wait to tell THAT story!
  • Pay off the rest of Lesa’s student loan and be DEBT FREE
  • Publish my book (will pitch to publishers in Spring)
  • Save/raise enough money to do a round of IVF
  • Begin the adoption process
  • Host an encouraging event for those who have lost children
  • See PA make Newborn Screening for Krabbe mandatory for ALL babies
  • Succeed in raising funds for Hunter’s Hope through a pilot program
  • Plus many other smaller goals

Brennan and I both feel encouraged and we feel hopeful for 2017. The Lord has already opened doors that excite us (ones that we couldn’t even have dreamed up) and we know that He has great things in store for us.

Years will continue to pass without Tori here with us, so while this first one is the hardest, we recognize that the heartache will never fully go away. Instead of dwelling on what we cannot change, we choose joy and hope. We choose to continue to fight for Newborn Screening so that others will never know the pain we have known. We continue to be grateful for all the Lord has done in and through us, knowing that He isn’t finished yet.

As we enter 2017, we pray that the Lord will continue to guide us and show us the path He wants us to take. And we pray that for all of you, as well.


Day One

Today our new life begins.

A life without Tori. A life with new purpose and priorities.

The visitors have stopped, the mail has slowed, the house is quiet.

Tori has been a resident of Heaven for a month now.

My dad has returned to California after being here for five weeks total.

It’s just the two of us now.

Today is the third first day of our new life together.

11.06.10 – We said “I do” and our life together began

07.30.14 – Victoria Ruth was born and our life as a family began

04.26.16 – Our life without Tori – just the two of us again – officially begins

I sit at the dining room table making a list of all the things that I need to accomplish while I sing along to some new favorite worship songs and drink my second cup of coffee.

We are taking some time to not only focus on our marriage but on our individual selves. This is especially important for me because I now have to establish a new routine, new objectives, and, really, a new life. The past two years were primarily focused on Tori and I selflessly poured all my effort and energy into her care.

How do I even begin to focus on myself now?

We decided that I won’t be trying to find an official job in this interim between Tori and whatever comes next. I have lobbying to do, and we hope to have more children in a year or two, so I need to remain home.

It’s so strange to be able to build a daily routine that involves only me – I have to answer questions such as “how do I want to fill my days?” Wisely. 

I have a few priorities right now: lobbying for Newborn Screening, writing a book, getting healthy (including losing all of my “sitting on a couch for fourteen months weight”), spending time in The Word, learning to love to cook again, playing piano and guitar, and continuing to maintain our home and garden.

Driving for UBER and working at MHS  will bring in some extra money in the meantime while still allowing me to focus on things like lobbying and writing. I’m so thankful for our careful budgeting and frugality that allow us to live on one income so well.

We have planned some trips this year and we are looking forward to our adventures and to spending quality time with one another.

I have no desire to fill my calendar and be “busy” every day – in fact, I am forcing myself to allow plenty of time to just “be” and to continue to process all that has happened.

My heart aches for my baby girl and I know that will never go away. But, as much as I long with all my heart to have her back with us, I know that she is where she is supposed to be. Where we ALL (as followers of Jesus) are supposed to be one day.

One day at a time I will establish new routines and take care of myself and our home. The Lord has brought us this far and I know that He will continue to lead us well. We trust Him with our past, present, and future, and we are thankful for His loving and gracious care.