For the past four months we have had the constant humming of an oxygen concentrator in our home. Every few minutes we would hear the loud noise of the suction machine. There was constant noise and we eventually became numb to it all…
…until it stopped.
We turned off the oxygen concentrator when Tori went to Heaven and were immediately aware of the loud silence that filled our home.
When I woke up this morning our home was completely silent.
As it has been said before, silence is deafening.
It is difficult, because those machines helped keep Tori comfortable and reminded us that she was still alive.
But, more than anything, the silence is comforting.
It means that our Tori is no longer reliant on supplemental oxygen, suction machines, and other devices. She is KRABBE FREE. Her body is no longer being ravaged by this horrific disease.
As Brennan has said many times, we are inherently selfish humans so we never wanted to let her go. Yet, as parents, the most selfless thing we could do was allow her to go to Heaven as she did, where we KNOW we will see her again someday soon and spend eternity with her.
When Tori left us on Sunday, she couldn’t smile, talk, move, laugh, yawn, or even sneeze. She needed oxygen to function. She was broken.
Our hearts are so overwhelmed with joy at the knowledge that she can do ALL of these things and even more now that she is with Jesus.
Yesterday her brain and spinal cord were donated to the University of Pittsburgh to further their research of Krabbe.
Today we will take this dress and (a duplicate of) her buddy to the funeral home for them to dress her for the last time. We have chosen to not see her body again on this earth because she isn’t in it.
Our lives will never be the same, but we will continue to live as we did while Tori was with us – with purpose, with love, and with JOY.
We taught her to live with joy and love despite our circumstances, and we need to continue to live that way until we meet her again. It won’t be that long in the grand scheme of eternity. ❤️
Even So, Joy 
Lesa, the whole world is heartbroken with you. I have looked forward to your daily posts on Tory. I feel like I know your family. You faith in God is amazing ! I am so glad that you and Brennan have found comfort and peace knowing that Tory is in a better place. As for you Lesa, your ability to write and express things is incredible..I do believe that you have a calling in that ! Its an option to explore sometime in the future. Sending many hugs to you all !
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My friend, you are beautiful! Prayers for continued peace.
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Thank you for sharing your heart so openly. I am sure that God will continue to use you in amazing ways. You are in my prayers as always.
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What a well worded post! i can imagine her running in the heavenly fields of green grass! And Jesus picking her up in his arms and spinning around as she SMILES! Prayers continue for you and Brennan as you adjust to a new normal, with your wonderful faith I know you will make it! And someday maybe you could turn this blog and other of your journal entries into a book to raise awareness about Krabbes! You do have a gift with words!
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I too felt the silence from an oxygen concentrator, suction, bi pap machine, iv drip, tanks, life slings, hospital bed, sponges, wheel chair and ramp after 19 yrs of having them. They were a part of my son as much as his laugh and hair. Once cleaned and disappeared in the med trucks..his room lonely and empty. Signing his death certificate. ..waiting for the funeral guys to come and get him..I cleaned his body ad I kissed him good bye before zipping him up in the body bag.
God is so good. It wad his strength not mine. His wisdom not mine, his timing not mine. I was so blessed to be in his presence.
Jerid is free.. the same as your daughter..full of joy..no pain and no more struggle. We are in the end times and soon so many of us will be seeing our children again..whole and happy.
When this happens, I will get to see my son for the first time…as God intended him to be. What a reunion that will be 😊
God bless
Lori
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God bless you Lori…..you too are an angel of our good God. ❤
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Dear Lesa, so many times I have read your post and you always amaze me in your love of Tori and love for our Lord and Savior, I know that as you grieve, you will have peace in the knowledge that Jesus is with you and Precious Tori and Brennan, will keep you all in my prayers. I am Blessed to know you!!!!!
Love,Joy and Peace be with you.
Love,
Millie
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Lesa, I have struggled for several days, since Tori went to heaven, on the “perfect” words to write. So many have already said what is within my heart too. I am so appreciative of feeling like I know you and your family, when in reality, we have never met . And I remember the time I message you on fb and you answered me….I was so touched! Oh my, how awesome….my favorite song just came on the Christian radio station here in St. Louis, MO, as I type…**AMAZING GRACE**….God works in awesome ways! Yes, that’s my message to you and Brennan..**Amazing Grace.**..you’ve lived it since Tori blessed your life…and you will continue to live it forever. You’ve blessed so many with your strong faith, and strengthened the faith of many too. God has and will continue to share His Amazing Grace through your beautiful Tori and you. My prayer for you and Brennan is that God continues to allow His Amazing Grace and love to surround you today and everyday as you continue your path of life and living the beautiful legacy that you have for Tori. She will never be forgotten.
Sending you love and a gentle hug ❤
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