Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori.
I don’t write this in defense or out of frustration, and I certainly owe no explanation – I write to simply provide insight into how we have been grieving in our own way in hopes that others like us might find encouragement somehow, and to ease the fears of those who are concerned.
I have observed that it is very important to not judge someone in their grief because we are all complex humans with different pasts, different psychological and emotional wellbeing, etc. We all deal with things in different ways and no one way is better. We are certainly no exception.
But we are truly doing well.
From the very beginning of our journey with Tori we have been transparent and honest. We have shared our struggles, our tears, our pain.
So many of my blog posts have been written through tears as I prayed so desperately for her earthly healing.
But no one except Brennan knows that.
While it has been less than three weeks since Tori went home to Heaven, it is important to remember that we have been grieving since February 13, 2015. Fourteen months.
Our grief really began on January 30, 2015 after hearing the CT scan results. Brain abnormalities. So many unknowns.
Our grief escalated on diagnosis day – February 13 – as we struggled to comprehend that our six month old baby girl was dying. Dying.
With each regression, with each ability lost, we grieved again. And again.
Not every week brought tears, because I’m not a naturally emotional person and never have been. But I will tell you that I cried more tears in the past fourteen months as I watched my baby girl slip further and further away than I have cried in my entire life.
And no one knows that except for Brennan and me. No one has been in our home continually to observe our grief.
We were given the “gift” of preparation for her death, something not all are given. We were able to make memories and have no regrets because we knew our time with her was short.
We thoroughly enjoyed our bucket list adventures with Tori and were so thankful for all of those opportunities because we were able to LIVE life so well with her. We found so much joy in those adventures AND in daily life. True joy.
We chose joy in the midst of our grief. Sometimes the emotions coincided as we realized that she wouldn’t be with us much longer, but joy prevailed most days.
In retrospect, we are so thankful that we were able to complete most of those adventures before she was on oxygen, before the decline really started to happen. As exhausted as we were from all the traveling and activities, we wouldn’t change a thing.
As her care intensified sometime around mid-February and her “blue episodes” became more frequent, we grieved anew and lived each day in a constant state of being alert. Each time she went blue I felt such panic wondering if this was a dress rehearsal or if this was the final curtain call.
On Easter, as Tori was healed and no longer trapped in a broken body, most of the heavy burden of grief I had felt for so long was lifted. She wasn’t struggling any longer. She wasn’t fully reliant on our vigilance to keep her airway clear from saliva. She was healed!
As her mother, as the one who was her full-time caretaker while Brennan worked so diligently to provide for our family, I felt – and feel – relief that my baby is now healthy. She is free from Krabbe. She can SMILE!
God’s Word is truth, and His “peace that surpasses understanding” (Philippians 4:7) has truly filled our hearts. We can’t explain it except to give God the glory.
I have yet to suppress my emotions and I will not allow myself to do that, ever. It isn’t healthy and it goes against everything I am.
Additionally, if I am being fake, how is that going to help anyone in our shoes who might come across my blog and need encouragement?
I have no idea what the future holds, and I don’t know what our journey of grief may look like.
But, I do know that I will continue to take each day as it comes, and I will continue to live fully in each moment, whether in joy or in grief. And I will continue to blog as transparently as ever, because truth is what changes lives and encourages hearts.
Even So, Joy 
God bless you Lesa and Brennan. Your strength and faith are amazing
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God bless you both. I truly understand how grief works differently for different people. Take care of yourselves and stay strong with the Lord. Let his Scripture help you both through the hard times you endure. And yes Tori is smiling down on you.
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Very well said Lesa and do
not be concerned with any comments. They haven’t worn your shoes. Love to you and Brennan
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Nobody should judge your grief. Ever. Everyone grieves in their own way and on their own terms. You and Brennan lost a bit of your daughter every. single. day. Nobody shares your experience entirely. We lost a son at 22 years old and I so clearly remember the “judgy people”. Your story has affected many deeply and profoundly. And my heart breaks for you both and for the loss of your sweet girl. . It has also given me hope that I may someday re enter my church and rid myself of some of my anger towards God. I want to thank all three of you for that.
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Well said. And what a beautiful gift to Lesa and Brennan that their journey with Tori might lead to some healing in your relationship with God. I will be praying for you.
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Very well said. My brother was severely injured in an accident at age 18. My mom was his primary caregiver for 12 years in much the same way and similar issues that you experienced with Tori. I know that she would echo many if not all of your words. She did struggle to find a new purpose once her days and thoughts were no longer focused on caregiving for my brother. So my ongoing prayer for you is that as you continue to seek God in this transition that He would give you wisdom, direction, and a clear purpose. Having grieved the loss of my brother both at age 18 and 30 and the loss of my husband at age 40, truly everyone grieves differently and each loss differently. We have never met, but I think and pray for you often.
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I have read everything you have written and it has been very clear that you have lived with Joy and Grief through this. It’s very clear God has held you guys up and I will say again Tor’s life will be used to help others. Until we ourselves walk a particular road we have know ideal how we will handle things. We all grieve different.
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Bravo! Beautifully said.
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I am soooo sorry you even need to write this post. It’s been less than 3 weeks and someone has the audacity to psycho-analyze your grieving?? Wow. Lesa, you speak truth when you say you don’t owe anyone an explanation, but I must say that your grace in the midst of judgement and ignorance teaches so many of us of a God-honoring way to respond, so thank you for writing this, even though it grieves my heart that there was any need to do so. You are one of my heroines.
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Your grief did begin last February…it continued to grow and change for 14 months. No one can judge what you have and are going through. God bless and guide both of you as you journey on, one day at a time.
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My sister isn’t sinking…she must be standing on the solid Rock.❤️
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Everyone responds to grief in their own way. I’m sorry people think you are suppressing your grief. I think they were only acting out of concern n love. What they may not realize is that they are not the ones walking this journey. You n your hubby are. I’m glad you responded to these people. Hang in there and try not to let others tell you how you should be feeling. Praying for you. Debbie H
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Dear Brennan and Lesa:
Truly, you have been living examples of one of the most poignant passages in The Scriptures:
Love is stronger than death.
Victoria knew that she was loved, and that is all that will ever matter, for YHVH, our Father, is Love.
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I am deeply sorry for your loss. May our Lord continue to give you comfort and peace. There are so many that share in your heartbreak and I am sure your story is an inspiration to them. Check out this website and please help spread the word: http://www.therproject.org. Your little star Tori shines brightly!
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Thank you so much for ministering to us thru your journey. My journey was 38 years ago and as a Christian I still have times of intense grief. Our baby Jesse was born before his lungs were fully developed and because we had a neo-natal intensive care unit taking wonderful care of him, we were able to love him for 6 months before he went to heaven. Five different times we were called to hurry to the hospital because they said they were losing him. When he died it was sudden and we were not there to hold him. My husband and I grieved in very different ways but God was so very present to carry us thru those first few years even as he has thru our 43 years of marriage.
I have followed your journey for many months and even though it hurts as it brings up my sorrow, it is also healing as I lean in to God’s love and forgiveness. I still have to fight blaming myself and probably won’t see complete healing until I stand before Jesus. To see God’s plan thru Tori’s life helps me see God’s plan for Jesse’s life. They were here for His purposes and for His glory and now they rejoice as they see how He has used them and how loved they are by Him. You know that Tori’s life mattered, not just to her family but to so many others. We don’t always understand God’s love but by faith we trust in Him. We will see our babies again. He will watch over you both thru your grief. He is faithful. He can be trusted with it all. Thank you again for sharing. I love all of you that have loved Tori.
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This post somehow makes me so proud to know you. It is so real and true and I think the way to live. Thanks for sharing.
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Hopefully, those expressing concern about your lack of visible mourning were simply worried about you. But I think I understand what you’re saying. Like David, you’re all cried out. You did the very best to celebrate each moment of joy in Tori’s life, and I’m sure you cried a lifetime of tears as you watched her slip slowly away. To know she’s now safe and well and thriving in that place we all long for…well, your tears are all fading away. It’s a time of celebrating her life and her home-going. And each person does that in his/her own way…and time.
My granddaughter, now five, suffers from a syndrome that’s only been identified in 140 people…ever. Only recently have we discovered this syndrome that has given her several near-death experiences and several disabilities (including having only half a heart). However, I’ve heard her Daddy (my son) and Mommy say more than once, “We’ve told Emma that we are right here fighting with her as long as she feels like fighting,” but then my son adds, “We have to remember, Mom, there’s a much better place where we all hope to be.”
Like you and your husband, they’ve been gifted with a daughter who, sort of like an “earth angel,” has come to teach us all the importance of heavenly traits, and the value of true love. So we celebrate the lessons they teach us, and remember that, truly, that kind of love never dies.
“Nana Jana” ð
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Although not even close to the experience of losing a child, I lost both parents to dementia years before they actually died. I, too, grieved that loss and saw their death as the first step to Heaven. It was with a sense of relief that I could let them go. You are both amazing parents and children of Christ.
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