Laying Tori to Rest

O death, where is your victory?
O death, where is your sting?
For sin is the sting that results in death, and the law gives sin its power.
But thank God!
He gives us victory over sin and death through our Lord Jesus Christ.
– 1 Corinthians 15:55-57

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
– 2 Corinthians 4:17-18

This afternoon, on this perfectly gorgeous day, Brennan and I laid our precious Victoria’s earthly body to rest. We placed a few white and yellow daisies – my favorite – on her box and Pastor Kerstetter said a few beautiful words about Tori’s legacy.

Her final resting place is beautiful, peaceful, and exactly where we wanted her body to be placed. She is not far from Mr. and Mrs. Hershey, two of our heroes, and it brought us peace to know that she would be with them (even though none of them are actually physically there). This was the perfect place to lay her earthly body, in a city that means a great deal to us.

A few tears were shed at the finality of it all, but we are still basking in the peace and joy of the Lord, and in the knowledge that this is NOT the end. She is not in that grave – she is fully healed and whole and in the arms of our Savior. 

He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away. – Revelation 21:4

I have told you all this so that you may have peace in me.
Here on earth you will have many trials and sorrows.
But take heart, because I have overcome the world.
– John 16:33

Silence 

  

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. ❤️

No Regrets

  
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. ❤️

Victoria Ruth’s Last Hours and the Hope of Heaven

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.

Unexpected Encouragement at Just the Right Time

This morning I received emails from two long-time friends, both offering prayerful encouragement that they felt the Lord leading them to type. They had no idea why they were prompted to write, but they faithfully did.

The first message said this:

I was outside praying this morning…it is still dark here and the stars and planets are beautiful. I was praying specifically for you, Tori and Brennan. At the moment when I asked Him to remember you, a gorgeous shooting star painted the sky right in front of me. I was already crying and just felt that was a beautiful affirmation. I know everything is so hard…please never doubt that He sees you, He loves you all, and He hasn’t forgotten you. Even now He is in control. I know you already know this. I just wanted to share that with you. ♡ ” Cast all of your cares upon Him, for He cares for you” ♡

The second spoke words of Scripture over us as a family and prayed that His perfect love would cast out all fear.

And it was needed.

I had one of the worst dreams of my life last night: the first – and hopefully the last – dream about Tori dying. 

Don’t you love how our dreams are wildly out of our control? 

In the dream, she went peacefully but suddenly – we weren’t expecting it in the moment. She didn’t seem to be struggling. She was just suddenly gone.

I kept thinking she was just sleeping. That she would wake up. But she didn’t.

The humorous thing was that we put her body in a giant gum ball machine and filled it with giant colorful gum balls for some reason. Our brains are so crazy when we sleep! I was thankful for the humor in the midst of such a terrible dream.

I was in a trance in the dream as we struggled to make arrangements and spread the news, but I was somehow able to do it all. That’s what I have heard from other Krabbe parents – that somehow you get through it all despite the intense grief.

Seeing her dead, even in the dream, shook me. We know this is the likely outcome but that doesn’t mean we are ready. Are you ever actually ready to lose a child?

Each time another Krabbe warrior goes to be with Jesus it is a harsh reminder of the path we are walking. Just this morning we learned that precious Addilyn passed away after four years of fighting Krabbe. Please pray for her family.

As the dream continued, we chose to have headstones in both California and Pennsylvania for some reason. We buried her in one of those places but I don’t know which. That was fitting because, as we have tried to talk through our plan should she not be healed on earth, we have no idea what we will do. 

We have planned much of her “celebration of life” service (and it will be that – a celebration!), but are still stuck with what to do with her physical body. It is as if our brains rebel at the slightest thought of having to decide between burial (and with that, where?) and cremation. 

The point of this post is two-fold: to share the dream but to also encourage you.

I don’t think this dream was prophetic or from God in any way (and I certainly pray it wasn’t!) but the encouragement from my friends was. 

When the Lord prompts you to do something or say something, do it. Say it. Even when it doesn’t make sense. Let Him use you to bless others in amazing ways.

We will continue to pray that this dream never comes true, even though we know that Krabbe=death unless it is caught at birth. We continue to trust God fully, knowing that He will redeem this in His own way, in His own time. ❤️ 

And we pray to never have a dream like that again. 

Elza Fay Eskridge, 1928-2015

   
He never had a mean word to say about anyone or anything. He lived out his faith openly and was respected by all who knew him.

My grandfather was loving, gentle, patient, kind, good. He was full of joy and always had a smile on his face, even until the end. He was often quiet, but living in a house with a wife and four daughters probably made him that way 😉. I can’t remember seeing him mad very often, so when he was mad we listened. We knew it must be serious.

He was a hard worker and was always doing something. He served in the Army, worked on the railroad, and sold real estate. He taught us to work hard and prepare for the future.

He knew practically everyone in town and would always talk to people in the store. If Grandma would send him for groceries he would often take a long time because he would be visiting. It was a running joke in the family. My dad said last night that Papa Fay is probably barely inside the gate of Heaven now because he is so busy visiting with people – something he hasn’t been able to do for quite awhile now.

I have many memories of my Papa Fay because I lived down the street from him and my grandmother for 11 years. 

He would often pick me up from school when my parents were working. He was at almost every school play or special event I was in. He loved being wherever his kids and grandkids were and took such joy in all of us. 

 

Papa Fay always had wisdom to share. He was one of the wisest men I have ever known. 

He was so supportive of me and all of my dreams, especially those concerning missions. He and my grandmother have spent their entire lives serving others in the name of Jesus, and I am so thankful for the example. He showed me what it means to be selfless through his daily life.

He was active in his community, especially in the Kiwanis Club. Each year during Rodeo weekend he could be found serving coffee and visiting with people at the Kiwanis Pancake Breakfast, usually doing more visiting than pouring coffee 😉

He taught me early on that serving others was a great way to spend your life. He showed that especially in his marriage – he loved my grandmother so much and showed it constantly. They were married for over 60 years and, even though he couldn’t express it well, it was obvious that he loved her until the end.

Fay Eskridge was an amazing man and I am so proud to be his granddaughter.

    

He loved Brennan, too. At our 50th annual Madole Family Reunion in 2011 (the last one he was able to attend), I remember him telling my aunt he wanted to sit next to “her husband” – Brennan. He didn’t always remember his name, but he knew he was my husband and he loved him.

      

So many memories of him from Family Reunions…this was in Trinidad, CA in 2009:

  

And McCloud, CA in 2008:

   

He was a man of love, and we loved him deeply.

But, Alzheimer’s took this man from us years ago. He was diagnosed in 2005 and the disease slowly ravaged his mind and his body. It is a horrific and tragic disease and I am so thankful that he is no longer suffering.

In 2009, we all went to Alaska together and that was our last trip with him. He was still doing pretty well then, still able to hold a conversation, still able to help with things like fixing my aunt’s fence. He was still the Papa Fay we had always known.

   
               The last few years have been rough as we watched him slip away. If I am honest, I have already grieved for him. While we physically lost him last night, we actually lost him many years ago. He has been a mere shell of his former self for years now.

I feel relieved and even happy for him, knowing that he is with Jesus in Heaven. He is whole, happy, healthy, and coherent again. He is with all of his brothers, sisters, parents, and other relatives who went before him. He isn’t trapped inside his own mind anymore, and he isn’t suffering. He is healed.

And, should God not heal Tori on this earth, Papa Fay will be waiting for her with open arms. He loved our little girl even though he may not have known who she was or whose she was.

I am so thankful that we brought Tori out in November. We had some very special moments with her and Papa Fay where he called her “Sweetie Pie” and even held her for about an hour. We captured that on video and in photos.

   
     I am so thankful we brought her out in April because he was still doing okay then compared to when we saw him yesterday.

Most of all, I am so thankful that we will spend an eternity with him. He instilled within me a love for God through his life, his words, and his actions, and I wouldn’t be who I am today without the impact of Papa Fay. 

Thank you for leaving such a legacy. Can’t wait to see you again ❤️

  
(All the grandkids together for his 80th birthday party in 2008.)