Unexpected: Our First Year Post-Diagnosis

Brennan and I each wrote our own posts reflecting on how we were doing one year ago, and you can read them here and here if you missed them. We joined together in this post to write about how we are doing now, which is far better than we would have expected.

Unexpected is the perfect word to describe the past year of our lives.

Krabbe was – and is – unexpected. Unwelcome. Unwanted.

If you had asked us what we expected life to be like be one year after finding out that our daughter was dying, I’m not sure what our response would have been.

However, we are certain that we would have been wrong given the state of our hearts and the quality of our lives today.

It’s likely that we expected:

  • Grief
  • Pain
  • Constant sorrow
  • Exhaustion
  • Regret
  • Stress
  • Bitterness (toward Krabbe)
  • Support from friends and family
  • God’s continual presence and love

Some of those things did indeed happen. But, we can say with confidence that the things we didn’t expect have been far more constant and powerful:

We certainly didn’t expect that such an amazing, unforgettable year was waiting for us.



One year ago today we were numb. Devastated. Grieving. That was to be expected. We were living in a nightmare that we couldn’t escape. Our baby was dying and there was nothing we could do. There was so much we didn’t know then, so many fears that existed in our hearts and minds. This was all so unexpected.

We expected the last year to be more sad, more grief-filled than it ended up being.

Yet, our grief and fear slowly turned to intentionality, to chosen joy.

Today, we can honestly say that we are joy-filled, content, calm, grateful, hopeful, intentional, fully present, and dedicated to ensuring that we give Tori the best possible life we can give her with whatever amount of time we are given.

Today, we love greatly, live fully and abundantly, forgive more quickly.

Today, we cherish every moment more than before.

Today, we are more content and more gracious.

Today, we feel at peace with the future. We definitely never expected that.

We are certain that God will heal her – either here on earth or by taking her to Heaven to be with Him. Heaven is the best place for any of us to be, so that thought brings us peace beyond understanding in the midst of this tragedy.

We know that we have done our best to care for her, to give her the best possible life we can. If we were to lose her tomorrow, we don’t believe that we would have many regrets because we have lived so intentionally with her and loved her abundantly.

We cannot change her prognosis, but we have allowed it to change us.


For the most part, our days are happy and joyful; however, that doesn’t mean that we don’t have our moments of grief and sadness. We allow ourselves to feel the pain and grief when they hit us – we don’t ignore reality. We still plead with God to heal her here on earth and use her testimony to change the world. Grief will always have an occasional presence in our lives.

We believe that there will be a time to grieve, but that time is not now.

What is most important now is to be fully present with Tori in order to make the most of these precious few months we have together on this earth.

Overall, we have changed for the better because of Tori. She has impacted our lives and the lives of others in ways we never could have imagined.

You may be wondering how this is possible. How can we have such a hopeful perspective?


It’s that simple for us.

We have seen God work in so many ways both directly in us and through the kindness of others, and we have been so overwhelmed by Him and His love. He has been with us every step of the way, and His presence in our circumstances has been obvious. That was not unexpected because He is always faithful. He did NOT cause Tori to have Krabbe, but He has chosen to allow it for a reason we don’t yet understand.

It all comes down to this: we serve a sovereign God who redeems us and brings good out of bad in our lives. He is good, He loves us, and we trust Him fully. Even in this. He has never failed us or abandoned us – why would He do so now? 


We all want our children to have a positive impact on the world, and Tori is already doing that in powerful ways. ❤️  God is working through her and through us, and we know that Tori will continue to have an impact for years to come.

We don’t know how much longer Tori will be with us on this earth, but we do know that we will continue to cherish each and every moment and never take this life for granted again. ❤ That can be expected.

If Tori has impacted your life in any way, we’d love to hear about it! Please leave us a comment and let us know – it would be so encouraging to hear your stories. ❤


8 thoughts on “Unexpected: Our First Year Post-Diagnosis

  1. Tori, and your family as a whole, have inspired me greatly since I found your blog many months ago. While I cannot relate to the situation and prognosis you are in, I have faced the tragedy of losing a daughter and now find myself parenting a 2 year old daughter with a recent genetic diagnosis (April 2015). While it is not likely to significantly affect her lifespan, it results in completely unexpected profound intellectual disability. We learned that our daughter will likely never talk and never be able to care at all for herself. She currently cannot walk or feed herself and sometimes the days are exhausting.
    We are also Christians and your blog has been more encouraging to me than any other source out there – Bible study, church friends, family members… it has helped me to CHOOSE JOY and to find contentment in a life that is not at all what I had planned for. Although I certainly grieved the life I thought our daughter would have, I am now at the point where I cherish her and can enjoy her exactly as she is. I credit a lot of that to the example that you both have set with Tori. Thank you. ❤

    Liked by 1 person

  2. I have expressed to you and Brennan what a wonderful encouragement you two have been to me in Richard’s illness (terminal cancer). I want to let others know that this young couple and this sweet girl set the standard for faith. They walk it, talk it and live it. Through their example I (an old woman) am encouraged and strengthened. We all pray for an earthly healing for all our loved ones. God is most assuredly faithful, God is assuredly good. God is … God! Whether He heals our loved ones on this earth or the next world, He is in it and will work through it. Praise be to God.

    Liked by 1 person

  3. Your family has inspired me by your faithfulness amidst a difficult and unexpected blow. You inspired me to get testing for our newborn grandaughter so that we could have the peace of mind knowing Krabbe and other life threatening diseases could be ruled out of her life. I am always encouraged when I read your posts and am so thankful you have the Lord, family and good friends to see you through this. God is good. His ways are not our ways but he can be trusted with all this life has to bring. I onto us to pray for all of you and especially for sweet Tori.

    Liked by 1 person

  4. I had the opportunity to meet you and Tori through my work and studies as a teacher for the visually impaired. I didn’t know before I walked in your door what Krabbe was or what it meant for Tori. Since that visit I have learned so much and continue to educate myself. I follow your story to learn not only about Krabbe but what life is like to live with the knowledge your child is dying. Unfortunately in the field I work in I may cross more paths like yours and I believe the way you are living your life can help others in the future. I feel fortunate to have met you and Tori because I have learned so much.

    Liked by 1 person

  5. Lesa and Brennan, I cannot being to imagine what you and sweet little Tori are going through, but your faith and reliance on God is so inspiring. Thank you so much for sharing this journey, and know that you are all constantly in my thoughts and prayers.

    Liked by 1 person

  6. Dear Lesa, Brennan, and precious little Victoria Ruth:

    You have shared so intimately and totally with all of us, strangers, friends and family alike, this poignant
    Journey of your lives this past year, without reservation. For that, we are all eternally grateful. Thank You so very much.

    Liked by 1 person

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