Grace in the Midst of Pain

Many have told us that they are amazed by the grace with which we are walking through this tragic and painful time.

We are amazed, too.

I’ve heard it said that trials bring out your true character. I must admit that I am surprised at who I have been throughout this journey.

Before this happened, I wasn’t always happy with who I had become. We had many unexpected changes in the past year; some had hardened my heart and left me bitter and unable to show grace easily. Add sleep deprivation into the mix and you have the perfect storm. These were mostly internal struggles – on the outside I was able to keep everything normal and in control.

Lately, bitterness has been trying to creep back into my heart because of the actions of a few people who are choosing to take out their inability to deal with Tori’s diagnosis on us. The “who” isn’t important – it’s the “what” that matters, and I choose to share this in hopes that it will impact someone and they will choose to treat families like us differently.

As if Krabbe weren’t enough to deal with, we are being forced to deal with irrational, selfish drama that makes no sense to us at all. People are making assumptions about us and they are wrong. Period. 

No matter how hard we try, we can’t seem to please a few certain people and it has caused so much additional stress and pain in our lives.

Tori is our first and only priority.

And yet, we still have so much grace in our hearts even in the midst of this pain and added drama.

Brennan said it so well this morning: 

  

Brennan and I are SO far from perfect. We are human, we make mistakes. But I can tell you this: we are loving, kind, joyful, non-judgmental people. 

We are so thankful for every single note or gift of encouragement that comes our way. We try to acknowledge all of these things publicly but sometimes we forget in the midst of taking care of Tori.

I wish you all could be a fly on the wall in our home, seeing what a day in our lives looks like, especially for me during the day when I am on my own caring for Tori.

This is my basic schedule:

  • 6:30am – feed Tori (40 mins)
  • 8:00am – give first med
  • 9:00am – give second med
  • 9:30am – try to shower quickly
  • 10:30am – feed Tori (40 mins)
  • 11:30am – 2:30pm – Early Intervention (not daily)
  • 2:30pm – feed Tori and give med
  • 3:30pm – give second med
  • 4:30pm – maybe start dinner 
  • 5:30pm – Brennan gets home 
  • 6:30pm – feed Tori 
  • 7:30pm – bath time (every other day)
  • 8:30pm – family time (maybe)
  • 9:30pm – give first med
  • 10:30pm – give second med and feed Tori 
  • 11:30pm – hopefully sleeping 

In between all of those things mentioned, I am also:

  • Giving eye drops
  • Putting face cream on
  • Putting splints on periodically
  • Suctioning her mouth 
  • Cleaning up spit up
  • Changing diapers
  • Changing her position 
  • Turning her giraffe back on all the time 
  • Doing vision and physical therapy
  • Holding her for hours if she needs or wants to be held
  • Updating Team Tori while she sleeps in my arms
  • Putting Essential Oils on her feet and diffusing them
  • Maybe getting one chore done
  • Maybe eating meals 
  • Preparing her milk for the next day
  • Venting her g-tube when she heaves
  • And the list goes on…

I do NOT say all of this for accolades or attention. I simply want to show that taking care of a baby like Tori is incredibly time consuming.

I rarely get to do anything for myself, and I don’t mind at all (as long as I can shower! Tori appreciates that, haha). This is my calling in life and I fully give myself to Tori and her care. I wouldn’t have it any other way.

Now that she has started to have swallowing issues, we cannot leave her unattended at all.

She hates the car, so I rarely leave the house. We are working on solutions (including trying a new car seat), but for the time being we take her to the doctor and to church. That’s it. She likes planes and trains, not the car.

While I try to post pictures of everything that has been sent to Tori, and while I try to put her in every outfit, it is a challenge. I fail. It is nothing personal, I promise. 

Tori has a huge pile of outfits that she has yet to wear! She has quite the wardrobe! 😄 I love posting pictures of her in all of the outfits that others have so generously given as a way to honor their gift, so I try my best to dress her in every outfit.

But, some days Tori doesn’t let me take pictures. Sometimes she needs to stay in pajamas and be comfortable. 

Tori is my priority, along with Brennan. 

I can’t believe that I even have to post this, but it is important to me that it be made known.

I do not judge others, for any reason. I do not hold grudges, and I don’t like that people are spreading rumors about us that are absolutely untrue. 

My husband is amazing and he is one of the best men I have ever known. The way he cares for Tori along with providing for our family is remarkable. He has such a pure heart and is so loving and good. ❤️

Please don’t assume things about us. Don’t tell us we are wrong about things when only we really know our hearts.

If you have a perceived problem with us, please come to us directly. Do not post passive-aggressive and vague statuses about us. Do not publicly slander us. Please. We don’t deserve this.

We have enough to deal with and may need to start establishing boundaries for our health and well-being, and that makes us sad. We have chosen to surround ourselves with positive, loving, helpful people, and we will continue to do so.

I’m sorry that not everyone is dealing with her diagnosis well. But I do believe that it is a choice to continue to show grace, to love her, to be part of her life as long as we have her. And it is definitely a choice to be sensitive to the needs and feelings of parents of terminally ill children. 

Grace and love abound in our home. Anyone who enters through our front door can see that. We do not intentionally leave people out or refuse to acknowledge things. 

Please show us (and other families like us) grace and love. It is the least you can do. 

Taking care of our precious baby girl is the most important part of our lives right now and nothing can or will change that.

The Original Quilt

It was brought to my attention today that I never did a post showing the individual squares of the quilt that was made by Brennan’s stepmother after our baby shower. I am not perfect and have forgotten many things in the past few months, and it wasn’t intentional. Taking care of Tori is stressful and I am sorry that I didn’t bring attention to this.

So here are pictures. Some are sideways for now but I don’t have time to turn them around at the moment.

Thank you, Tammy, for the idea and for taking the time to do this for Tori. ❤️

   
                                           

I Hate Krabbe

Rarely does a day go by where I am not brought to tears because of the realities of Krabbe and the destruction it brings to its innocent victims – my own daughter included in those ranks.

I remember my grandmother telling me to never use the word hate because it meant that you wished someone/something didn’t exist. 

I definitely think hate is the appropriate word for how I feel about Krabbe.

I think what I hate the most is the fact that you have no idea that anything is wrong with your child for a long time. 

You think your baby is developing normally, they are happy, and then all of a sudden it goes away. The pain sets in, your child is miserable, and you will never see them smiling again.

Krabbe is terrible because it is both a sudden change and a long progression before death.

Our Tori was taken from us within one week. ONE WEEK. And we had NO idea what was happening.

Everything was explainable with a theory. Growth spurt. Teething. Reflux. Hydrocephalus. 

Nope. None of the above.

I think what I hate the most is that the first things it took from her/us was her smile, her laugh, her voice. Her personality. Her.

It has been a rough two days as she continues to struggle to swallow, and as she continues to throw up small amounts through her mouth despite the Nissen procedure. I have had to suction her many times this morning so that she didn’t aspirate or choke on her own saliva and phlegm.

This disease sucks.

I don’t know how we are going to get through the rest of her life if this disease continues to get worse. 

The fear that surrounds us grows daily as we are now afraid to leave her unattended for any length of time. Even sleep was difficult last night because I was afraid that I wouldn’t hear her coughing in time to suction her.

Krabbe sucks. And the fact that over forty states do not screen for this at birth is infuriating. No child or parent should have to go through this. No one.

Please pray for Tori…pray that she will swallow and not aspirate, that she would be comfortable and not in any pain. 

Please pray for Brennan and me…for wisdom, calm hearts, and patience.

And please contact your state representatives and senators about adding Krabbe to the Newborn Screening Tests. 

This disease must be stopped.

Quilt of Love

My cousin Danette asked for family and friends to create quilt squares for Tori months ago, and I was so surprised to receive it tonight! 

Thank you to all who sent her squares! And don’t feel badly if you forgot – my parents and aunts did, too 😉❤️ 

And most of all, thank you, Danette, for this beautiful gift of love ❤️

   
       

The handprints are Brennan’s, Tori’s, and mine…

       

The doll square was made from a square my Great-Grandma Vera made (Tori’s Great-Great-Grandma) ❤️

       

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.)

Reality Check 

Lately I have been able to go days without thinking about the reality that Tori is dying.

  
She has been so stable, so calm, so content. 

         So, it was a rude awakening when she started to have difficultly swallowing last night.

The suck and swallow reflex is a “use it or lose it” ability, which is why we almost always have her sucking on a pacifier. We were advised by the SLP at Hershey Medical Center back in February (pre-diagnosis but post-swallow study) to do so in order to help her maintain those abilities as long as possible.

Four months later, she still has both abilities, but her swallow reflex is fading.

We had already started the process of obtaining a “suction machine” for her, but today it became our first priority. 

We will use it to help her get rid of saliva and phlegm when she cannot swallow it. This machine will help us prevent her from aspirating anything, which is crucial because aspiration can lead to pneumonia. Pneumonia will likely lead to…

The machine will be delivered on Monday. Until then, we have to listen to her carefully and do our best to help her get rid of excess saliva with the “booger sucker” bulb.

Today was a reminder that she is fragile, that she is dying. 

It reminded me to continue to pray diligently and without ceasing for her, because in the busyness of caring for her it is easy to forget to do anything else, including prayer. And I humbly admit that full days have gone by where I have forgotten to say even a short prayer for her because I have been so focused on her needs; I had forgotten that the greatest thing I can do is to pray to the only one who can heal her. Not anymore. Our baby girl still needs a miracle.

Please pray that she will maintain the ability to swallow as long as possible. Please pray that God will choose to restore Tori and make our Victoria victorious through Him. ❤️

Our God is greater
Our God is stronger
God, You are higher than any other 
Our God is healer
Awesome in power 
Our God, our God
                       —
Chris Tomlin 


#ToriTuesday Update

It’s been busy since we got back from Pittsburgh last Thursday! We unpacked and immediately repacked for a weekend of houseparenting at MHS (Milton Hershey School). 

Tori turned ten months old while we were there!

  

Tori had a rough night and day today. We aren’t sure what is bothering her but we gave her some Motrin, diffused some Essential Oils, and rubbed some on her feet. She has napped quite a bit in my arms since noon and that seems to be helping. 

Tori’s nutritionist came today and weighed Tori. She is up to 14lbs 2oz! She is almost back on the growth charts 😉 Tori is growing at a great pace and everyone is happy with her progress.

Tori’s Facebook page is almost at 9,000 followers and we are so humbled. It is such an encouragement to interact with so many people who love her! 

Because of her Facebook page we have been recognized quite a few times in public, the most recent being on Sunday at Starbucks. A woman came up and asked if her name was Tori and if I was Lesa. It amazes and humbles us that people remember who we are and that they come up to talk to us. It encourages my heart as her mama. ❤️ Brennan and I joke about being local celebrities 😉 haha. We like to keep things lighthearted in our home. 

We return to California next week for family time, including my family reunion on the Northern California coast – the 53rd annual! Most of those family members haven’t met Tori yet so it was important for us to go back again to introduce them. 😄 AND, Tori will get to go to the beach for the first time! So excited about that.

Overall, we are all doing well. ❤️ Please continue to pray for healing…

Here are some pictures from the past week: