Tori has been in Heaven for twenty-six hours now, and while we miss her deeply, I cannot express the peace that I feel.
I have often pondered over the past fourteen months whether it is “better” (as if there is any good way) to lose a child suddenly or over time.
To lose one suddenly and unexpectedly means that they usually don’t suffer and it is quick, but you don’t always get to say goodbye.
To lose one over time, as we did, means that you watch them deteriorate and you grieve for an undetermined period of time. But, you can cherish each moment and make purposeful memories with them, grieving along the way.
I now know that the way we lost Tori is the “better” way.
We have no regrets about how we lived out her life. We knew we only had her for a short time on this earth and we treasured every moment.
Yes, we loved our adventures with her and loved checking off Bucket List items; but, what we loved most of all was that we spent hundreds – maybe thousands – of hours holding her, cuddling with her, loving her. It was our favorite thing to do.
We chose joy – and continue to do so – and when she left this earth yesterday we were somewhat ready (is any parent ever fully ready? No.).
We feel immense peace that is from the Lord alone.
We will absolutely go through the grieving process again, but I think (probably wrongly) it will be a little easier this time (as opposed to the past fourteen months of our lives) because we know she is healed. She is happy. She is in the best possible place and is with Jesus.
We cannot express how stressful the past few months have been at times, as caring for her became increasingly intense and she began having “episodes” of turning slightly blue on occasion. Overall she was doing well still, but there were moments of panic in the last month.
It is going to take months to recover from the level of stress we have lived on.
We thought Tori was going to live longer, but we are so thankful that she didn’t suffer. She was never sick! She never had seizures. She was only hospitalized one time. She was so fortunate in so many ways and we know that God protected her.
God is great, faithful, gracious, and loving. We trust His plan and can’t wait to see how He continues to use Tori.
We are so thankful that God gave Victoria to us and we know that she will continue to change lives. ❤️
Even So, Joy 
You’re little Victoria was, is and always will be an inspiration to me and so many world wide! Thank you for sharing her! Thank you for sharing the wisdom you gained about Krabbe, thank you for sharing your inner thoughts, your love, your faith, happiness, and the ever present demons of doubt that surely plaque us all but only Christ can erase! I loved her, as I love her still! I will never, ever forget her courage! Her will to live! Rest in peace sweet Tori! ❤❤❤
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I have enjoyed following Tori theis past year and just fell in love with her beautiful big eyes. I am deeply saddened by her passing but rejoice in the fact that she has been made whole and is with our savoir. You will continue to be in my prayers and I continue to be amazed by your faith.
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Words cannot describe how I feel hearing this sad, but joyful news…I have been a faithful follower of Tori and Krabbe disease . I am honored to have been a part of your journal that you have shared so gracefully.. May the Lord Bless you with abundance of great memories. With much Love to your family,, in Prayer, Ruth Conrad
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Lesa and Brennan-
No adequate words can express how we feel in your loss of Tori. Praise GOD she is in heaven with him and fully healed! I can picture her chasing butterflies in the sunshine! We pray that GODS grace will cover you both and surround you with his love.
Karen and Rob Fisher
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Lesa and Brennan,
I picture in my mind a beautiful assent into heaven this Easter by Jesus holding Tori’s hand as she toddles beside him happy, healthy and full of Christ’s grace!
What a beautiful gift from god she is. As we feel the sorrow of your loss, our hearts and prayers are with you for Tori’s short time on earth has touched so many people. You will never know the full extent of grace provided to all of them and how many have turned their lives around because of her and your ministry.
All who have followed your posts and may have not ever personally known your family have been blessed.
Thank you for sharing your daughter and your lives with us.
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Amen. Alleluia. ❤️
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You both should have no regrets…..you did more with little Tori than some parents do in a much longer period of time. So glad that Tori is now in God’s loving care and pray that the wonderful memories that you’ve made with Tori in her short little life will ease your pain.
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I don’t believe I’ve ever written or responded to your posts. But I followed them and have prayed for the two of you and Tori every day for many months – since I first learned of your family and her illness. I will continue to pray for you both, as you adjust to your life here on earth, with your beloved daughter in heaven. May God continue to bless you with peace, blessed hope, much-needed rest, and joy of your memories of your time with Tori.
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Your posting of no regrets is the greatest and we are so glad that you are our grand daughter. You and Brennen did everything right and we are so proud of you.Love to you both. Grandpa Ken and Grandma Pat Close
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While I’m sure you will miss Tori, I believe that only very special people are allowed the gift of going to heaven on Easter. I can’t think the timing was incidental. God bless you!
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What a beautiful thought, and I must agree. Without a doubt, Tori fulfilled being a special person!💜The gates opened wide and she ran into God’s loving arms on the day of His resurrection.
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I too have been following your story for over a year. I “checked in” daily with Tori. I was shocked and saddened to see of her passing but I definitely thought, You go, Tori! What a day to choose to go home to heaven!
You two have parented in a way that you can always be proud of. The unconditional love you showed this precious girl, the full life you gave her in her short time on earth, and your desire to reach out to others and work to get testing out there for all babies – all amazing stuff that you crammed into your time with Tori.
You all will remain in my prayers. I pray that the peace the Lord has given you stays with you always.
Bless you.
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I have followed your posts for some time. What an inspiration and testimony if Faith you have been. God Bless You and Your Family! I am so sorry for your loss here on earth. And I Pray for God’s Loving Arms embrace you and your family thru this time. When I read the first posts of Tori’s passing on Easter Day, I thought, what a Special Day to go Home to be with Jesus, but Ressurection Day! Heaven surely does have a New Special Angel! And what a Joyous Day it will be to see her again someday! God Bless You!!!
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Jason and I send our prayers for your family. We are so sorry for the heart ache that your are and have experienced. I know you know Jason Egli, I am his mom and have been following your journey. We trust God will bring a rainbow after the rain.
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This is one brave post. Full of truth and bravery. This is how to face the unfairness of death and to live day after day. May you find time and healing for this rightly-named upcoming stress adjustment you will both go through and find your new normal. There will be joy in your new normal. I promise but more importantly, so does God.
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You and Brennan are amazing people and I am sure that you were specially selected to be the parents of this very beautiful child. I am so touched and inspired every time I read your posts. May the PEACE of the LORD be with you always.
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So many others can say it so much better than I can, but again, I am so thankful for those last few hours you had with her- To snuggle her and tell it it was okay to go home. You will never, never know how many lives she has impacted until we see her again someday. ❤ You are always on my heart.
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You ,Brennan, and Brennan are such inspiration to me.I have followed your story from the beginning and was always so amazed at how you both handled things.I wore my Tori sweatshirt on Saturday to a event at the farm show and so many people said I never met her but know all about her.She touched so many lives in her short time here.You both were the best parents for her.So glad she is no longer suffering.You will be in our prayers always!
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As I sit here reading all of the sweet post tears are falling from my eyes because like so many other I too had fallen in love with your sweet Tori she was such a precious child that angelic little face and big eyes that said so much. I can not even began to know what you went through with her illness but shared her with us all and so it will be that we will feel the void that she is no longer here but what beautiful day for the lord to call her home no more suffering no more pain for her. My thoughts and prayers for both of you and I know in my heart Tori is in a good and beautiful place.
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I never knew about this disease until Tori and I believe a lot of other people did either.Tori saved many babies lives.
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Lesa and Brennan, Your family has taught us about courage and faith and love-mostly love. I would say that what you have and are experiencing is indescribable but yet you manage to articulate it beautifully. I’m in awe of your strength. You and Tori have touched many people deeply.
I will always remember little Tori, and her big beautiful eyes.
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Thoughts go out to you all at this sad time. Have been following Tori’s page for a long time now. Tori is and always will be remembered by many people around the world. RIP SWEET TORI. Gone but never forgotton sweet Angel xx
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Lisa I can honestly say that God could not have given that little girl to anyone else besides you and Brennan, you two have done such a wonderful job raising her and taking care of her for the past 18 months, God had a plan and his plan has been filled. I never had to go thru what the two of you had to do for your daughter, but with the grace of God, you two handled it is such a way that amazes me and a lot of people, You two will be blessed in so many ways and with the Faith that the two of you have, you both will get thru this and your lives will be changed forever and remember you will always have a little guardian angel staring at you and watching over you two forever. You both will meet someday in Heaven and your pain will be gone forever. Keep the Faith and God will take you the rest of the way. Nina
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I wanted to let you know that I recently (3 weeks ago) had the same exact feelings with the passing of my 15 year old dog. Please do not be offended, Chloe was my constant companion for 15+ years, I raised her, saw her through every trial in her life and I went through the same stress in the past year + watching her deteriorate but all the while being thankful to have the time to love and care for her. It was my honor to be her mommy. It took everything I had at times, I cried for over a year just thinking of the day I would have to say goodbye and I grieved all the way through it. When she passed I thought I would feel the same pain I had felt when a previous pup, Levi, passed suddenly but I did not. I was washed over in peace and I have said that that is my hope for all who experience loss is to find the peace. I feel like my peace was a gift and I am grateful for it. When i would tell people I was at peace with her passing some would look at me judgmentally as if they felt I should be grieving in the way they would grieve and I would just tell them how grateful I was for the gift of peace and that I wished it for them should they ever need it. I am now grateful that you too have received the gift of peace. Your family is in my thoughts and I look forward to celebrating her life with you in April.
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We have been praying for your family ever since we learned of Tori’s condition. Thank you for the amazing testimony that you have been to so many. Now we will pray for God’s comfort, and all else that is needed, for the two of you.
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I GRIEVE with you….most of ALL I thank my GOD that the Brackbills know CHRIST and will in GOD’S PERFECT TIMING be reunited with their SPECIAL ANGEL
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I’ve been catching up on a few blog entries. Just know that I am praying for you.
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