This morning our dear Tori met Jesus face to face and was healed.
Last night was my night to sleep upstairs, but I told Brennan, as always, to text or call if he needed anything.
My phone rang at 5:01am and it was Brennan.
As I struggled to wake up I was trying to comprehend why he was calling.
I then realized that something must be wrong with Tori.
I ran downstairs to find him holding her, her pulse ox was flat lined and beeping, and she was blue.
She was gone.
We used his stethoscope to try to find a heart beat but there was none.
Time of death: 5:01am.
We were not entirely unsurprised but it was still a shock. She had been having some “blue episodes” lately and we had a feeling the disease was progressing quickly. Still, she had been doing so well!
My parents (who were in the basement) heard us crying and came upstairs. My dad took her and held her so we could make calls. He held her skin to skin and she was definitely not breathing. No pulse.
And then, a sigh. A deep breath followed by silence. And then another. We hooked up her pulse ox again and she was alive!
Time of awakening: 5:15am
We cried and held her and praised God for this chance to say goodbye, if that is what needed to happen.
The hospice nurse came out and assessed her and said she seemed to be doing great. Her numbers were perfect and she was comfortable. We were hopeful that maybe she would bounce back and that we would have her for a few more months.
I took a few pictures of her with my camera and my phone while she was resting, just in case it was my last opportunity.
Brennan and I put her in the middle of our bed and cuddled with her. We laid down around 7:45am and all fell asleep.
At 9:01am the pulse ox beeped and I woke up to suction her. Her numbers continued to drop and she didn’t take another breath. Brennan and I told her we love her and said that if she wanted to go to Jesus it was okay.
Time of death: 9:05am.
God answered our prayers in many ways today: we were both there, we were at home, we got to say goodbye, and she went peacefully.
She had so many adventures in her almost twenty months of life. She brought so much joy to so many.
And, most importantly, her life will save lives! We will never stop fighting for Newborn Screening for ALL babies. And, we chose to donate her brain to research to further the knowledge her doctors have of Krabbe so that they can one day find a cure.
Her Celebration of Life will be on April 9th, details to follow. It will be a joyous day filled with love because she is with JESUS in Heaven. She is healed! She doesn’t need oxygen any longer, she doesn’t struggle to swallow, and she isn’t in pain.
Because of our faith in Jesus and what He did this Easter weekend 2,000 years ago, we have the hope that we will only be separated from her for a short while. We will one day be reunited with her in eternity and she will be WHOLE. She will be able to run around and talk and smile again.
We love our Tori and miss her more than our words can express. But we are so thankful that we are assured of where she is and that she is HEALED. ❤️
A GoFundMe has been set up to help us pay for any expenses that arise: https://www.gofundme.com/exw54vq4 If you feel led to help in this way, we would appreciate any donation you can give.
Even So, Joy 
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