So, I Got a Job…

As I mentioned before, I recently accepted a part-time position at The Hotel Hershey – more specifically, at The Spa at The Hotel Hershey (where Brennan has worked for 13.5 years and counting). This all came about rather quickly, so I’m still getting used to the idea of working outside of the home, but I know that it will be good for many reasons.

This was my idea. Even on Easter, just hours after Tori went to Heaven, I asked Brennan what I was supposed to do now that she is gone. My “job” as a mom was suddenly null and void, and I was completely unsure of what I should be doing.

Two years ago I left my job (that I loved) to become a stay-at-home mother; I ended up loving my new life more than I had ever imagined. I was so thrilled that I may never have to have a “real job” outside of the home again. I had finally found what I was meant to do.

And then, Krabbe.

Krabbe is the proverbial gift that keeps on giving, but in a negative way. I suppose that makes it the gift that keeps on taking.

It took Tori. It is making future children merely a dream. And it took my beloved job from me.

With Tori gone and no more children in our immediate future (yet), I just don’t feel as though I can justify not having a job anymore. I want to help with our finances during this period of waiting to ease the burden from Brennan (even though he has never complained).

I didn’t take the job because I am bored – I’m so far from being bored! I have many things on my plate that require time, but none of them bring money along with them (yet), unfortunately. My book is essentially done, and the book proposal is in process, so maybe that will eventually bring in some extra income, but it’s not a guarantee at all.

This summer was amazing and it was just what I needed: doing photography for CRC, writing/editing for The Transcend Project as well as my own blog and manuscript, serving at Transcend Church, traveling and seeing family, lobbying for Newborn Screening in Pennsylvania occasionally (and next week), and many other things. Doing these things gave me an outlet for my creativity, filling my heart with joy as I was able to serve once again in these capacities. I was able to take some time to do what makes me happy, and I am so thankful for that. All of these things will still happen, of course, even though I have a job – that’s why I only accepted a part-time position 😉

More than anything, though, what my heart longs for is to be a mother again. That’s all. The very thing that so many women take for granted is the thing I want most of all, and it’s so risky (to try naturally) and expensive (IVF or adoption) for us because of our genetics.

So, while we wait on the Lord and trust His timing and guidance, I decided that it wouldn’t hurt to get a fun part-time job (2-3 days a week with the option to take on extra shifts) at a place that feels like home with people who have been so supportive of us through everything. And God made all of that happen. 

Trust in the Lord with all your heart;
    do not depend on your own understanding.
 Seek his will in all you do,
    and he will show you which path to take. – Proverbs 3:5-6 NLT

If nothing else, this will get me out of the house, allow me to meet interesting people, and provide new topics for my writing 😉 I’m sure that my encounters with guests will be interesting!

In all things, we continue to trust God fully, knowing without a doubt that whatever He has in store for us is amazing. ❤

God is ALWAYS on Time

If I am being honest, lately I have been struggling to pray for Tori’s healing. I ask others to do it but I can’t form the words in my own heart and mind. I feel stuck. Numb. Defeated.

I absolutely still want it and believe that it can happen, but doubt has worked its way into my heart and mind, and lately I doubt that God is going to heal her here on earth. Because of this doubt, I struggle to pray. I start but the words just don’t come.

It is times like this when I am most thankful that we don’t have to pray with words. God knows our hearts, and His Word tells us that the Holy Spirit intercedes for us when we don’t know what to say (Romans 8:26).


I still struggle with hope because hope is difficult. Yet I still desperately want her to be healed on earth. Desperately.

In a dream that a friend had recently, I wasn’t able to see an older, healed Tori in a picture on a wall. She could see her, but I couldn’t.

I’ve been thinking about this ever since she shared the dream because I think God is trying to tell me something.

My friend has been praying about the meaning and suggested this: that no matter what, I need to see her as being healed, because she IS healed somewhere.

I’m still praying about the meaning. And I’m praying that this dream in particular is prophetic…that Tori will be the older sibling to many other children and that she will be healthy…that her testimony will change the world.


“Then like a hero who takes the stage when
We’re on the edge of our seats saying it’s too late…”

– MercyMe, “Flawless”

It seems like God speaks through His Word and the words of those seeking Him when I am struggling the most.

He keeps bringing stories of healing to my attention, and while these accounts are encouraging, it also leaves me wondering why He is bringing these forward. Is He going to heal her?

This happened two months ago in my daily Bible reading (the Bible is split into 365 readings, dated, not a “pick your own reading” type of thing). It also happened about two weeks ago when I finally found our Kindle Charger and was able to scroll through the hundreds of free eBooks we have obtained since we lost the charger.

The eBook “The Same Love” by Paul Baloche (a well-known songwriter) caught my attention so I opened it and began reading.

What was the first chapter about? Healing. Timing. Love.

Baloche started with Mark 5:21-43 which shows two healings – one of a woman who had been bleeding for 12 years, and one of a young girl who was sick and died but Jesus brought her back to life.

The woman seemingly derailed Jesus from getting to the young girl in time, but what this proved was that Jesus works outside of “time” and He is NEVER late. He created time and is not restrained by it.

I love the way that the author paraphrases the scene between Jairus and Jesus after his daughter has died:

Jesus had barely finished speaking when several people ran up. Jairus, it’s too late. She’s gone.

Jesus moved between Jairus and the distraction. This moment is about you and what you say you believe. This can end here, or we can keep going. What do you say?

 (The Same Love, Chapter 1)

The author points out that all those involved in this passage experienced the same love, the love of God. Just like we do today. Yet, even those who walked with Jesus in person also experienced doubt. Amazing, isn’t it, that those who saw with their own eyes the miracles that Jesus did still doubted?

Shouldn’t we admit, though, that even after experiencing this love, we’ve entertained doubts? And though we have seen answers to prayers, some questions still remain? In this life we experience the discipline of holiness alongside the inevitable humanity of sinfulness. And between these opposing realities, we’re daily called to choose to pledge our allegiance to the God who never leaves us, committing afresh to walk the walk of faith. God’s unwavering love for us continues, even when ours falters…

Faith by its very definition is belief in that which is unseen. It’s believing that the same love that spread the heavens wide and was crucified and raised Jairus’s little girl and sent a woman back into her new life is calling to you today. Your circumstances will be unique to you. Maybe the same love is challenging you to choose what you believe. Maybe you’re being asked to bravely step out and let everyone see you and your story…

(The Same Love, Chapter 1)

While these words are so encouraging, and so seemingly meant just for me right now, I still have no idea what God is going to do in Tori’s life…and that’s okay.

We are definitely called to let others see our story, which is why we are being as open and transparent as we can along the way.

We wonder if God is going to heal Tori here or in Heaven.

If here, we wonder when and how. Gradual? Immediate?

We wonder how long she will be with us.

So much wondering, not enough trusting.

We need to stop creating scenes in our head and instead trust the One who wrote the entire play.

Whether He heals her now or later, we know He is going to heal her. She is healed. It may not be the way our hearts would prefer, but we trust that God is good and has an amazing purpose for all of this that we simply can’t see at the moment. This is Act One, and Act Three is many pages away.

We aren’t meant to understand right now – we are meant to trust Him and keep on walking.

Our God is never late. Our God loves us deeply and created us with purpose. He will heal her in HIS timing, in HIS way; we need to trust Him in this and with this.

“What do you mean, ‘If I can’?” Jesus asked.
“Anything is possible if a person believes.”

The father instantly cried out, “I do believe,
but help me overcome my unbelief!”

Mark 9:23-24

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 ❤

Forgive my unbelief…

“What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”

The father instantly cried out, “I do believe, but help me overcome my unbelief!”

Mark 9:23-24

I wonder if the father in this passage felt the same way that I so often do – so desperately wanting his child to be made whole again, knowing that Jesus can do it, but afraid to be hopeful.

Afraid.

More often than not, my prayer is that of the father in this account: I believe, but help me overcome my unbelief!

I waver between knowing without a doubt that God can heal her here on earth and yet doubting that He will. 

I have discovered that I am afraid to be hopeful, despite our experiences in the past few days and with how God seems to be working.

I am still trying to pinpoint the cause of the fear, but I think it comes down to a fear of being disappointed in the outcome, a fear of being disappointed in God – whom I love and trust implicitly – if He takes her home to Heaven instead of allowing us to keep her, even though I do trust His plan and do not doubt that His plan is best for all of us.

I think fear is to blame. 

Fear is easy; hope is excruciating.

What we are going through is completely unnatural. Parents aren’t supposed to lose their children. As someone who doesn’t even know how it feels to lose a grandparent yet (yes, I am blessed to still have all four!), the thought of losing my only child is incomprehensible. 

I wonder if my fear of being hopeful is a defense mechanism.

I am afraid to hope that God will choose to heal Tori here on earth, despite the fact that every fiber of my being desperately wants that to be the outcome.

Hope is hard. Hope is vulnerable. It seems irrational in a situation like this.

Fear is comfortable, expected, the rational response.

And yet, I remind myself that we serve the same God who healed/heals the sick and who raised people from the dead! Jesus Himself was resurrected after being in the tomb for three days! 

Nothing is impossible with God. Nothing!

Jesus repeatedly told His disciples to not be afraid, and that nothing is impossible for God. That is what I force myself to remember daily – it isn’t impossible for Tori to be healed! 

The struggle continues, and I pray that I can overcome the fear of being hopeful because I know that God is love, He is good, and His plan is best. 

I don’t know if Jesus meant belief in Him or absolute belief that healing would happen; but I do know that He loves Brennan, Tori, and me. And whatever He has planned will be okay in the end.

“Do you ever tell God that you are angry at him?”

We are asked fairly often if we are angry at God or frustrated with Him.

We can honestly say no. We are not.

Are we curious to know why this is happening? Of course.

Do we have our moments of sorrow and frustration at our circumstances? Definitely.

But anger at God has not been and is not currently something we are experiencing.

God is God and we are not.

“My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.” Isaiah 55:8

As I wrote before, we trust God completely and, even though we don’t like what is happening, we know that we will eventually (even if in Heaven) understand why this happened. We know beyond any doubt that He is trustworthy, faithful, and loving.

We know that He will be glorified through her life no matter how long we have her here on earth.

This doesn’t mean that we are “okay” with Tori’s situation, blindly accepting it without emotion. But, it does mean that it’s “okay” in the sense that we know that God is in control, we know that He loves us – and her – and we know that He has an amazing plan for all of our lives. We are unable to comprehend His plan at this moment, but we trust that He has one.

We are filled with His peace that exceeds all that we understand. There is no earthly reason for us to be so at peace with all of this – it is absolutely from God. Being at peace doesn’t mean that we are okay with any of this, but it means that we trust the One who knows all and created all. We trust Him fully with our precious Tori and know that He loves her even more than we do. We know that He eventually uses all things for the good of those who love Him (Romans 8:28).

It is a moment-by-moment process of surrendering all of this to Him and choosing to not worry, to not be angry, and to continue to hope that He will choose to heal her here on earth. He is more than able, and nothing is impossible for Him (Luke 1:37)!

The daily reading for today is from Psalm 66, and it is so fitting for our situation, and for this question:

Psalm 66

Shout joyful praises to God, all the earth!
    Sing about the glory of his name!
    Tell the world how glorious he is.
Say to God, “How awesome are your deeds!
    Your enemies cringe before your mighty power.
Everything on earth will worship you;
    they will sing your praises,
    shouting your name in glorious songs.” 

Come and see what our God has done,
    what awesome miracles he performs for people!
He made a dry path through the Red Sea,[a]
    and his people went across on foot.
    There we rejoiced in him.
For by his great power he rules forever.
    He watches every movement of the nations;
    let no rebel rise in defiance. Interlude

Let the whole world bless our God
    and loudly sing his praises.
Our lives are in his hands,
    and he keeps our feet from stumbling.
10 You have tested us, O God;
    you have purified us like silver.
11 You captured us in your net
    and laid the burden of slavery on our backs.
12 Then you put a leader over us.[b]
    We went through fire and flood,
    but you brought us to a place of great abundance.

13 Now I come to your Temple with burnt offerings
    to fulfill the vows I made to you—
14 yes, the sacred vows that I made
    when I was in deep trouble.
15 That is why I am sacrificing burnt offerings to you—
    the best of my rams as a pleasing aroma,
    and a sacrifice of bulls and male goats. Interlude

16 Come and listen, all you who fear God,
    and I will tell you what he did for me.
17 For I cried out to him for help,
    praising him as I spoke.
18 If I had not confessed the sin in my heart,
    the Lord would not have listened.
19 But God did listen!
    He paid attention to my prayer.
20 Praise God, who did not ignore my prayer
    or withdraw his unfailing love from me.

Praise God who does not ignore our prayers or withdraw His unfailing love from us.