We are taught from an early age that knowledge prepares you for what lies ahead and can usually ease the difficulty or stress of the situation. We study for exams, prepare for interviews, research to obtain knowledge. Preparation is key, we are told.

Brennan and I have realized that, though we have known the inevitable end for over a year now, we aren’t any more prepared to lose our daughter. We never will be. Not with this. In fact, I think the knowledge makes every little scare exponentially more difficult.

We have had a few “scares” with Tori in the past month, moments where she has turned blue and her oxygen saturation has dropped very low. In those moments, especially the first couple of times, I panicked as we tried to get her to breathe normally. We were afraid that this was it – that she was going to die.

And I was a wreck. We both were.

We know that one day all too soon Tori’s brain will no longer tell her lungs to breathe deeply in order to oxygenate her body. We know that one day she may not wake up in the morning. We know all of this.

But, in that moment where death appears to be lurking, that knowledge is useless.

Thankfully, she has quickly bounced back each time and we know that she is doing well – her brain is just struggling at times to multi-task. That’s what happens with Krabbe as the brain continues to deteriorate and the signals that once moved so quickly and with such strength fade slowly. We are so thankful in those moments for the pulse-oximeter that beeps loudly to alert us to any issues with her saturation, allowing us to quickly move into action.


Last month, as we left Tori in the induction room for her MRI, it felt so strange (as it always does) to leave her behind. To not have her with us. And I realized that each time we do this we are getting a tiny glimpse into life without Tori here.

I’m the type of person who would rather face unpleasant situations in life in order to have resolution as quickly as possible. If I know pain is inevitable, I’d rather just face it so that it is over.

But this is different. Losing Tori is entirely different.

I will linger in this unknown for as long as I possibly can.

Because when the unknown is gone, so is she.


13 thoughts on “Unprepared

  1. I used to think that it must be easier for people who lose a loved one due to disease, sickness, etc. than for those whose loved one just passes away totally unexpectedly. It seemed like, with the preparation time and the expectancy, that it would somehow ease the loss. It doesn’t. I learned this when my best friend passed away several years ago. As much as you might know that it’s going to happen and you are waiting for it, it still really, REALLY hurts. And that person is no longer there. There’s a finality in that. I cannot even fathom what you are going through on a daily basis, but I sure do appreciate that you allow all of us to have an extra special glimpse into life with Tori – she has touched SO MANY!

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    1. I have been pondering the same thing (about which is “easier”) for months and have thought about blogging about it. I think we do have it “easier” even though it’s still hard. ❤


      1. No, but nothing is going to reverse her condition. Her body doesn’t produce a crucial enzyme.


  2. This really tugged at my heart strings….. I can only imagine how much panic you and Brennan feel! I don’t think we can ever prepare for the death of a child! We just trust in God to carry us through and lean on those we support us!

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  3. This post moved me to tears. Death is never easy to face and I can’t imagine living with it hanging over your head with your baby girl. Last May my only sister gave birth to her ninth baby. Five weeks later, on Father’s Day, she died suddenly of a blood clot. She was in York Hospital for several days and had a simple procedure done. She was supposed to be coming home on Monday, but instead she went Home on Sunday morning. It was so unexpected and it’s been a hard year for me. She was 38. I don’t think it would have been easier if it had happened over time. Yes, maybe it would have given us time to prepare, but I wouldn’t have wanted to watch her suffer.
    Thank you for sharing your story with us. I’ve been following you for a while but never posted. I am praying for you, though. I love seeing your pictures and reading of Tori’s adventures. She is a beautiful little girl with such expressive eyes.

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  4. Oh, Lesa my heart is breaking for all of you. Losing a child, no matter what age is extremely heart wrenching. My oldest daughter passed away 6 years ago. Even though she was 43 at the time and we were somewhat prepared for it, it isn’t any easier. I was hoping beyond all that is human that she would pull through this time. She had battled neuroblastoma as a 4 year old but all the treatment that saved her from that damaged her heart. I know she is now free from any pain and suffering and is with her Lord in heaven. I still grieve for her but know that I will see her again. Please keep the faith and know that God makes no mistakes and he gave Tori to both of you because he knew you would be the best parents Tori could ever have. He only gives his special children to special parents. I love following your adventures. Jane

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  5. I recognize, that though this season is very hard, you call the Father into each moment. Keep focused on Him and He will continue to help you all with all the uncertainities. Blessings and prayers.

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  6. What wonderful parents you are for Tori. In loving her, you have grown so much deeper, and your writings have revealed that depth. It’s not something I can explain…except to say that parental love, familial love, changes us. Maybe it’s preparing us for the depth of emotion we will feel when we’re all reunited in Heaven one day. All I know for certain is that I see Tori looking at you two in her latest photos, really looking at you, as if to memorize your faces, your voices, and your love. If she departs, she will carry those with her until that day you all are reunited. And truly, you won’t be losing each other entirely, just remembering, and loving, even when apart. For love never dies. And God is always good, even when life’s circumstances are not.

    “Nana Jana” 😊

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  7. This blog pulled at my heart strings, as so many have already. I don’t think that we are ever entirely prepared for death…even though we all know that it’s inevitable. Anticipated or unexpected, we are never entirely ready.
    Truth is, we really don’t die but rather we leave our earthly life and enter into our Heavenly reward. It’s the ünknown that makes us uncomfortable as we haven’t been there and no one has come back to tell us the beauty that awaits us.
    Our faith must sustain us. We must all live each day as if it’s our last day regardless of our life circumstances. God’s plan is the only plan.
    I pray for His grace to continue to comfort your family, Lesa, as He guides you through your earthly life. He has a plan for each of us and when we trust His plan, as you do, we will experience His heavenly kingdom. ❤

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