We have known that something was seriously wrong with Tori for over nine months now.

We have lived with the knowledge that Tori is dying for eight months.

Amidst the sorrow we chose early on to love her fiercely and to LIVE while she is with us here on earth. 

We made the decision to choose joy, and living that out has come easily for the most part.

You’ve seen our adventures as we work our way through Tori’s Bucket List and many have commented on the fact that we are always smiling in pictures. This comment has always surprised me, and here’s why…

Tori is here. Tori is cognitively aware. Tori is healthy. We have so much to be thankful for despite the looming threat of death that is constantly present.

By making memories with her and sharing her with our families and friends, we are recognizing that there is a time to laugh, a time to dance, a time to live. 

Death will likely come far too soon for our precious daughter, and when that time comes we will mourn and grieve.

But not now.

At the same time, the mix of emotions as we live out each day is difficult to describe.

Our adventures have been so fun and have filled our hearts with such joy. We feel like a “normal family” doing normal things, and the diversions are refreshing.

Yet there are moments during our adventures when I am speechless, filled with emotion. Saddened by the knowledge that we shouldn’t have to have a bucket list for our baby. Heartbroken by the realization of all that she won’t be able to do and experience some day.

One example happened at our cousin’s wedding recently. It was so beautiful and perfect, so filled with joy. 

But when the bride danced with her father during the reception, my heart ached for Brennan, because without a miracle he won’t get to walk Tori down the aisle someday and dance that special dance.

He and I looked at each other later that same evening and I told him that being there was harder on me than I had expected, and he replied “I know.” Without speaking details, we knew we were on the same page.

The joy doesn’t replace the heartache; rather, they tensely  coexist each day, fighting for our undivided attention.

When I look at Tori’s beautiful face as I watch her fight this horrific disease, my heart swells with fierce love and admiration. 

She is perfect, beautiful, smart, and gentle. She is so precious to us. She is God’s gift to us, for however long He chooses to allow us to keep her. 

She deserves our joy, our love, and our attention.

The time for mourning and grieving will likely come. Eventually.

But now is the time for joy, for laughter, for dancing, for life, and for love. ❤️