We’re NOT Entitled to an Easy Life…

A couple of weeks ago I listened to a sermon by Pastor Chris Brown of North Coast Church in California. Chris was our campus pastor for three of my four years at APU and his teaching style impacted me greatly during those years. God used him to challenge me in ways I couldn’t have imagined. Just looking at the margins of the Bible I was using at the time would show you how much I learned from him!

This particular sermon was about getting “Unstuck” from religion. It just happened to be the next sermon in the series – I didn’t listen to this specific one for any particular reason, but God knew that I needed to hear what Chris would say.

I’m not going to detail out exactly what he said – you can listen to it here. But I do want to mention some of the lessons from his teaching that God has used in the days since to show me more about this unwanted journey we are on and how we should respond.

After the battle was over, the troops retreated to their camp, and the elders of Israel asked, “Why did the Lord allow us to be defeated by the Philistines?”

– 1 Samuel 4:3

In short, this passage in 1 Samuel 4 is about the Israelites relying on religion instead of God. They believed that their rituals would bring them success, but they left God out of it entirely, and they were defeated. They were clueless as to why the Lord allowed them to be defeated. Chris said a lot more about this than I will, as that’s not the objective of this post.

As he continued through the lesson about how you can know if you’re stuck in religion, his second and third points were the ones that impacted me greatly. It’s not that Brennan and I are stuck in religion (thankfully!), but the Lord used his words in a powerful way to speak to me.

The second point was titled, “My focus is on what I get, not the giver.” He discussed the point of prayer: is it to get things to go better for us or to have a relationship with God? 

‘We have turned prayer into what we get from God, not how we get TO God…”God, give me…God, do this…”‘ – Chris Brown

Is God useful or is God worthy? Are we asking Him to give me something or to change me?

The third point was: “I’m angry at God when I don’t get what I ask for.”

“We’ve got the wrong idea of prayer if this is where it leads us.” – Chris Brown

Pastor Chris then talked about when Jesus was in the Garden of Gethsemane before He was arrested. Jesus knew exactly what was going to happen to Him, and yet His prayer sounded nothing like what ours would have been.

Then Jesus went with them to the olive grove called Gethsemane, and he said, “Sit here while I go over there to pray.”  He took Peter and Zebedee’s two sons, James and John, and he became anguished and distressed. He told them, “My soul is crushed with grief to the point of death. Stay here and keep watch with me.”

He went on a little farther and bowed with his face to the ground, praying, “My Father! If it is possible, let this cup of suffering be taken away from me. Yet I want your will to be done, not mine.”  – Matthew 26:36-39

Jesus, knowing that He was about to be brutally beaten and crucified, prayed that God’s Will be done, not His own selfish desires. In his grief and desperation, He knew that what God had planned was best for not only Him, but for all mankind. So He submitted to the Will of His Father, despite the personal suffering He would undergo.

If Jesus Himself suffered, why do we think that our lives should be easy and painless?

“We expect a much better life than Jesus and His disciples, and we all know they got killed and tortured. But we deserve a much better life than that and we demand it in prayer. And when we don’t get it, it leaves us angry and frustrated with God.” – Chris Brown

I’m not entitled to a life of comfort and perfection. WE aren’t entitled to that life! No matter what our culture teaches us, or what the media portrays, life is not supposed to be easy and carefree. God never said that would be our reality.


As we walk through this season of knowing that we are likely going to lose Tori, it has been so tempting to be frustrated with God. We haven’t been angry with Him, but there have definitely been times when it seems like He is so far away, like He is ignoring our prayers. Sometimes it feels like we are alone.

The unanswered prayers for Tori to be healed aren’t the ones that cause the frustration: it’s the simple prayers like the ones for her to sleep so that we can sleep, because our continual sleep deprivation is wearing on us. It seems like something so easy for God to do, and yet He doesn’t answer them the way we want Him to answer.

We’re constantly asking God to make things easier for us – and while there’s nothing wrong with asking for those things, sometimes we lose sight of the fact that we’re constantly asking for Him to do things instead of asking how we can serve/learn/grow through these things.

Who are we to ask God to change His mind? We have no idea what He has in store. We can’t even imagine how He is going to use Tori’s life (and our lives) to impact the world! If He took this cup from us, would His impact on the world through her/us be the same?

When we think about it like this, it almost feels selfish to pray for God to heal her (almost – it’s obviously not selfish to want to keep your precious child).

We will continue to pray for her earthly healing, but we also pray that God will continue to use this situation to impact the world, to grow His Kingdom though Tori’s precious life, that there will be VICTORY through Victoria even if there isn’t an earthly victory FOR her.

Your will be done…


Pastor Chris gave a beautiful example of how we can pray through things like this:

“In the midst of this, if it doesn’t go this way, give me what I need to walk with you and be a light. And God, if this is the darkness we have to walk through, may we shine and may we shine brightly.” – Chris Brown

The Bible contains so much wisdom about how to live this life in a way that honors God. He never promised to do miracles – but He did promise that He would always be with us (Matthew 28:20).

His presence is worth more than His presents.

He tells us to cast our cares upon Him so that He can walk through these trials with us, so that we don’t go through them seemingly alone.

Sometimes He doesn’t take the problems from us, but He always carries them with us if we will allow Him the opportunity.


Lord, may we shine brightly through this unbelievable trial that you have allowed to happen in our lives. Please forgive us for believing that we are somehow entitled to a painless life, free from sorrow. We continue to plead with you to heal Tori, but more than anything we want YOUR Will to be done in her life, not our will. 

Holding on to Hope…

   
   
Tori will have another MRI in twenty days, a follow-up to the two done in February…

…the two that confirmed that her brain was damaged beyond repair by a then undiagnosed (but suspected) disease.

I remember that day so clearly – February 6, 2015. 10:45am.

My mom and I took Tori to her neurologist to review the MRI images and discuss the results. 

Brennan didn’t come because we didn’t realize just how significant that day would be in our lives – we thought it was going to be routine. Fixable.

Even to my untrained eyes, it was evident that something was severely wrong based on those images.

Brennan has still never seen the MRIs (not intentionally – just haven’t had a chance to have someone show them to us again). He says he doesn’t think he wants to see them.

Tori had another MRI done two weeks later in Pittsburgh by Dr. Escolar to ensure that her specific protocol was followed so that the disease could be fully seen, and we haven’t had a chance to see those images either – we were far too grieved during that first visit to even think about asking.

It has now been six months since the first MRI and next Friday will be six months post-diagnosis. 

When we travel to Pittsburgh at the end of the month, Dr. Escolar will perform another MRI to see what progression the disease has made.

This time we will ask to see them.

Shortly after Tori was diagnosed I had a thought that has been my prayer until now: that the next MRI would show unexplainable improvement. That Dr. E would be astonished, unsure of what she saw. 

That they would want to make sure it was Tori’s brain they had scanned.

We cling to hope but remain firmly rooted in reality, knowing that this could be God’s plan for her.

BUT…what if His plan is for her to be healed? For His power to be shown through her? 

What if He has world-changing plans for our little girl?

Please pray with us for unexplainable improvement twenty days from now (August 27). Pray for a miracle. 

We will hope until the end that God will heal her – we serve a God who works outside of time, so He is never late.

August 27th, 1:45pm. Please join us in prayer before and during the MRI. 

God can do this!

Financial Transparency and Blessings

We have been wanting to share how we have been using the Team Tori funds for quite a while as a way of being transparent, as well as to show our stewardship with the amazing financial blessings that have been sent our way by very generous people.

Since the amount is publicly known, we wanted to use this as a way to say thank you once again. We don’t feel that we “owe” an explanation, but we want to give one as a way to show you how much your generosity has blessed us and has enabled us to take even better care of Tori than we could have on our own.

When our friend Jessica surprised us with the GoFundMe page we were still in the hospital with Tori, pre-Krabbe diagnosis. She set it up to cover both medical and living expenses that we might incur because of Tori’s situation. We had no idea what we were facing or how much it was all going to cost. To say that we were blown away by the support that came in is an understatement!

We would have been more than happy with the original goal she set of $5,000, which would have covered our deductible and out-of-pocket requirements for our insurance; but you kept giving and giving, and eventually over $19,000 was raised. That doesn’t include the cash, checks, and gift cards that were sent directly to us, either!

You may have been wondering how have we spent the money, so we want to share with you that we have done so very carefully. This probably doesn’t include everything because my memory has been affected by a lack of sleep, but it gives you an idea! We promise that none of it has been used frivolously or carelessly, and all has been for Tori’s benefit.

Because of your generosity, we…

  • Filled up our HSA (health savings account) as much as was allowed legally in order to pay medical bills;
  • Purchased a deep freezer to hold Tori’s breastmilk;
  • Purchased essential oils to aid in keeping Tori (and us) healthy, as well as to help with pain relief for her;
  • Purchased an inexpensive laptop ($300) for hospital stays and traveling so that we could update the blog and communicate properly (we discovered how difficult it was to only use our phones while we were in the hospital for five days with her in February);
  • Purchased supplies and ordered photos to create her Project Life albums so that her story is fully recorded in words and photos;
  • Reduced Brennan’s work week from five days a week to four days so that he can be home with Tori three full days a week…
  • Started making memories with Tori off of her “Bucket List“;
  • Paid for our stays at the Ronald McDonald House and other expenses to get us to and from Pittsburgh for her appointments;
  • Took Tori to California to see Lesa’s side of the family, who aren’t able to travel to see her in Pennsylvania;
  • Helped another Krabbe family pay for a piece of equipment they desperately needed and insurance was fighting with them over;
  • Traveled to the Hunter’s Hope Symposium where we received much needed encouragement and knowledge;
  • And more than I can even remember, I’m sure…

All of that listed above amounts to less than $10,000.

On top of this, you all voted diligently and we won $1,000 in free gas from Exxon! This is going to last us for a very long time and we were able to take gasoline out of our budget! Huge blessing!

As you can see, YOU have been God’s hands and feet to us, and through you He has taken care of some significant needs during this time. This has eased some of burden we carry in this journey with Tori and has allowed us to have much-needed time together as a family. Priceless.


We have been so fortunate to have amazing primary insurance that has covered EVERYTHING for us. We do not take this for granted or even expect it to continue, given the issues that so many families have shared with us.

We had kept most of the money in savings in order to pay for things we assumed that insurance wouldn’t cover, but, thus far, Brennan’s insurance has covered all of her equipment, even the $5,300 adaptive stroller!

But, once we got the stroller we realized that we had a significant problem: it wasn’t going to fit in either of our cars.

Her stroller, which provides comfort and support so that she can travel more comfortably, would not be able to leave the house/neighborhood.

We realized that a different vehicle would be required, so we started looking, knowing that we didn’t have the money saved up to pay for it (we follow Dave Ramsey and don’t believe in financing anything 🙂 ), nor could we afford a car payment right now.

So, after seeking counsel from trusted friends and family, and after prayer, we decided that this was the best possible use of the Team Tori funds that we had left. After all, what good is all of this equipment if we can’t take Tori out of the house?

We knew our budget of $14,500 was low for a minivan, but we started looking anyway. There were three used minivans on the market at local dealerships, all with low mileage and unbelievably low prices. We consulted with a friend who is a car expert and he advised us to pursue one of the three – the same one we loved!

So, we went to the dealership, test drove the one van (2011 Dodge Grand Caravan Crew) we loved the most (and Tori slept through the entire test drive because she was so comfortable in it!); they wanted more than we had for it, but Brennan did an amazing job of negotiating and talked them down to exactly what we had left in the Team Tori fund!

IMG_8031

We paid for the van in cash and walked away SO excited, knowing that Tori would now be SO much more comfortable in “her” van, and knowing that we didn’t have to be afraid to take her out of the house as much anymore.

Tori always used to cry in the car…she rarely cries in the van now. It is obvious that the smoother ride has made a difference for her.

We absolutely believe that the purchase of the van was a God-ordained thing! From the timing to the amazing van we found for just the amount of money that we had, to the fact that it can not only store all of Tori’s equipment with room to spare AND she is comfortable, it has been one of the greatest blessings of our lives.

The fund has been building back up thanks to so many donations toward her “Bucket List” – and that is exactly what those funds will be used for. Experiences, memories, joy. Designated funds are used as they are designated.

We are very diligent with these generous gifts that you have given to us and we do not take your generosity for granted. Every gift that we have received has left us in awe and wonder of God’s love – and your love – for Tori and for us, that even in the middle of the worst storm of our lives, He is there, calming the waves and making a way for us to focus on the important things, like loving Tori with our whole hearts.

So, THANK YOU. Thank you for supporting us, for organizing fundraisers, for designing t-shirts and bracelets and Jamberry wraps; for bringing us meals, for pumping breastmilk so that Tori has nourishment; for sending Tori cards and gifts (and giraffes), and for allowing the three of us to have so much cherished time together; thank you for spreading awareness about Krabbe and leukodystrophies, for contacting your legislators about Newborn Screening legislation.

Most importantly, thank you for continuing to pray for Tori and for us. We know that God hears our prayers, and even if He chooses to answer them in a way that we don’t like, we will still praise Him and serve Him, because we know that He is good, loving, and kind.

Thank you doesn’t seem like enough. This long post doesn’t seem like enough. Know that we are so blessed by each and every one of you who follow Tori’s story. Your encouragement and prayers get us through each day ❤

Psalm 143

This was the Psalm for the day in my One Year Bible…I love it and I am using some of these verses as my prayer today. ❤️

Hear my prayer, O LORD; listen to my plea! Answer me because you are faithful and righteous.

Don’t put your servant on trial, for no one is innocent before you. My enemy has chased me. He has knocked me to the ground and forces me to live in darkness like those in the grave…

I remember the days of old. I ponder all your great works and think about what you have done. I lift my hands to you in prayer.

I thirst for you as parched land thirsts for rain.

Come quickly, LORD, and answer me…Don’t turn away from me, or I will die. Let me hear of your unfailing love each morning, for I am trusting you.

Show me where to walk, for I give myself to you. Rescue me from my enemies, LORD; I run to you to hide me.

Teach me to do your will, for you are my God. May your gracious Spirit lead me forward on a firm footing.

For the glory of your name, O LORD, preserve my life.

Because of your faithfulness, bring me out of this distress. In your unfailing love, silence all my enemies and destroy all my foes, for I am your servant.

Psalm 143‬:‭1-12‬ (NLT)

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 


Plans Far Greater…

This appeared on my Time Hop today…

 

It hit me in a new way this morning as I realized that it might possibly pertain to our own lives now.

And I don’t think I want it. 

At this moment, I just want my Tori. A healed, typically developing Tori. I don’t want God to use us without her.

Rationally I know that this life is not my own, anyway. God alone knows why all of this is happening and He can see the ending of our earthly story even though we can’t. He knows the plans He has for us, with or without Tori.

But that doesn’t mean that I want that right now.

This brings me back to a point of surrender because I am reminded that God can redeem any circumstance we may encounter. He can take the tragic death of a child and make something beautiful from it. In the case of Mr. and Mrs. Hershey, their inability to have children of their own created an opportunity to touch tens of thousands of children.

We continue to pray that Tori will be completely and miraculously healed here on this earth. That is our hearts’ greatest desire.

But, if we have to lose Tori here on this earth, then I desperately want God to have a great plan for us, a purpose for her precious life…a plan far greater than we can imagine.

A Mustard Seed of Faith

  
I want to see my prayers do something big. In person. 

So often we pray for others passionately and see God move from afar. But I want to see Him move up close – in my daughter’s life. I have never wanted anything so desperately. I want to see her healed here on earth!

Our baby girl is nine months old now. From a medical perspective, she has fifteen months or less to live.

Fifteen months. Or less.

And yet , we know that God is greater than Krabbe. The Bible tells us that faith in Him can do amazing things:

Then Jesus told them, “I tell you the truth, if you have faith and don’t doubt, you can do things like this and much more. You can even say to this mountain, ‘May you be lifted up and thrown into the sea,’ and it will happen. You can pray for anything, and if you have faith, you will receive it.” (‭Matthew‬ ‭21‬:‭21-22‬ NLT)

The apostles said to the Lord, “Show us how to increase our faith.” The Lord answered, “If you had faith even as small as a mustard seed, you could say to this mulberry tree, ‘May you be uprooted and thrown into the sea,’ and it would obey you! (‭Luke‬ ‭17‬:‭5-6‬ NLT)

We want to see our faith move mountains, figuratively. We face impossible odds right now with Tori from an earthly perspective, but we know and believe that with God ALL things are possible! Krabbe is our mountain. Krabbe is our mulberry tree.

Lord, please save Tori’s life. Allow us to struggle with her as a drama-filled little girl; allow us to have the frustrations that parents of teenagers experience; allow us to raise her to know You and to love You. Please. 

You told us to pray for Your Will to be done on earth just like it is in Heaven, and Lord, we know that there are no diseases in Heaven. So we pray that Tori would be completely healed!

God, we have faith bigger than a mustard seed (from our perspective), and we believe with all our hearts that You can heal her earthly body! Please heal her. Restore her brain to full function and remove Krabbe from her body. In Jesus’ name we ask these things…