A Week of Lasts

Most parents reminisce about their child’s firsts – first word, first steps, first everything. It’s exciting to watch our children learn and grow as they explore their new world.

For Brennan and I, it seems that we remember the lasts much more vividly – always in hindsight.

As our Tori loses her previously achieved milestones, we remember. We mourn. 

This coming week, one year ago, was one of lasts, but we didn’t realize it then. 


Even now it is hard to pinpoint exactly when she has lost abilities because most of them have happened so gradually that we didn’t even notice; or, we assumed she just wasn’t feeling well one day and therefore was not doing normal things, when in actuality she had lost another ability.

I often wonder if the Lord allowed us to have five perfect months with Tori because of what He knew was going to happen. Five months with a perfect baby; five months of smiles, laughter, and joy; five months of calm before the storm.

This week last year was the last time Tori smiled, laughed, played with her toys, attempted to move on her own, and many other abilities. 

This video is the last one we have of a “healthy” Tori – still happy and able to express herself. Still able to play.

One year ago today. ❤️


These were her five month pictures, December 30, 2014.  

These are the last two photos we have of her smiling ❤️ It’s a slight smile, but it’s there. January 6, 2015.


She rolled over for the first and last time this week last year.


And then the number of photos posted daily slows down drastically, indicating that Krabbe came on with full force. 

She stopped being herself so suddenly and we didn’t even realize it at the time.

However, in the midst of the sadness these memories bring, there is also immense joy. 

Every breath she breathes. Every time she opens her beautiful eyes. Every sigh of contentment. 

Every day that we are given with her is precious beyond words and we are filled with gratitude.

We are thankful for her presence. For how she has impacted our lives and the lives of thousands who follow her story. For how she has changed us for the better.

She has taught us to love abundantly, to live fully, to forgive wholeheartedly, and to show grace freely.

We are thankful for our Victoria.

God gave her to us for a reason, and we will love her for the rest of our lives. We love this baby girl even more than we did one year ago – our love is more fierce, more intentional, more compassionate.

She is such a fighter and we can see her continue to try to fight Krabbe with all she has: she is only on one med now instead of three; her visual perception *improved* as of last month. She even held her head up by herself two days ago!  

We don’t know what the future may bring, but we cherish every moment we have with Tori and continue to live life with her to the fullest ❤️ It’s the least we can do for our baby girl.

7 thoughts on “A Week of Lasts

  1. Tori is the luckiest kid in the world to have been given two wonderful parents as yourselves. You are making her time here with you full and joyous… You are an admiration. Hugs to all of you and sweet kisses to your beautiful baby girl!

    Liked by 1 person

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