When Jordan Hill Visited…

Somehow we neglected to post on this blog about our visit from Jordan Hill of the Seattle Seahawks in April! I was reminded of this when our story appeared on ESPN today, so I thought I’d write about that day for our own memory later.

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We had been contacted by a mutual friend of Jordan and his wife, Cristen, asking if we’d be interested in adding “Meet an NFL Player” to Tori’s Bucket List  because Jordan had heard about Tori and wanted to come meet her when they were in the area visiting family. We set up the visit and it was about a month away.

We have joked that Tori must not have been a Seahawks’ fan because she decided to go to Heaven two weeks before Jordan and his wife were scheduled to visit. ❤

Once she passed, we didn’t expect to meet Jordan and would have understood if they had canceled their visit…so when he and his wife came over on April 12, we were so excited!

The ESPN article talks about the visit in detail and articulates the emotion of it all very well. Thank you, Sheil, for writing about our story and putting Krabbe back in the spotlight nationally!

Most of all, thank you, Jordan and Cristen, for your kindness and for honoring our daughter in this way. We will treasure the autographed shirt that you brought for her! ❤

My Third Mother’s Day

I have never been one to embrace or become attached to holidays like Valentine’s Day or the other “Hallmark Holidays” like Mother’s Day, primarily because I have been taught to celebrate these things daily, not once every year.

Even though I’ve been a mother the past three years (pregnant, present, absent), it’s just another day to me. I’m also a rebel and don’t like being told what to do. 😉 But mostly it’s because I love cherishing the family I have been given continually and not just because we are told to do so by “someone.”

I’ve also been taught to not focus on what you are lacking, but rather to focus on what you have, to appreciate all that you have been given and not dwell on what has been taken away. Paul phrased it as “being content” no matter the circumstances (Phil. 4:11).

So, while this is probably supposed to be a sad day for me because my Tori is in Heaven and not in my arms, it truly isn’t. ❤

As I have mentioned many times before, the discipline of gratitude has had a profound impact on my life. When you make a point to be grateful for things and to name those things out loud (or in writing), it is much more difficult to be negative and sad. God is always at work in our lives and recognizing His hand makes life abundantly joyful, even in the midst of heartache.

So, today – as always – I focus on my blessings:

I am SO thankful to have been chosen to be Tori’s mama and to have had those beautiful twenty months with her. Those beautiful and wise eyes of hers spoke volumes when her mouth couldn’t: I know she loved me and I know she knew she was loved.

Her existence taught me so much and her brief presence on earth has made me such a better person. I am more loving, more patient, more gracious, more kind, more GRATEFUL, more selfless, more like Jesus (which should be every believer’s goal). She was a miracle child in so many ways, and I’m so grateful.

I will always be Tori’s mama! I pray that the changes I see in myself because of her are not only temporary but rather that they continue to change me to be more like Jesus.

I’m thankful to be here in California with my mother and my grandmothers today to celebrate them in person. I wouldn’t be who I am today if it weren’t for these women, for their example and training, for their love. They taught me to be a mother by living it out so well in their own lives with my parents.

These three women – Pat, Ruth, and DeAnne – loved me enough to discipline me and teach me while I was young because they knew that it was vitally important for my well-being. They also taught me valuable skills and I can never repay them for all they have done for me, except by carrying on this tradition of selfless love with my own children.

My mom, in particular, showed me what selfless love looked like over and over again during Tori’s earthly life. She spent weeks with us, helping doing things around the house, cooking meals, and, of course, cuddling with Tori. She has always put other before herself and is such an example to all. She continued to do what she could from across the country to make our lives a little easier even though she couldn’t be physically present every day.

She is an amazing grandmother and I hope that she will have the honor of being a grandmother again someday.

So, on this Mother’s Day, I am grateful for my heritage and the examples of motherhood in my life. I wouldn’t be the mother I was to Tori if it weren’t for these women. ❤ It’s a day of joy, not of sorrow, and we will continue to focus on what we have been given.

 

The Discipline of Gratitude 

I was taught a lesson (a discipline, really) during my senior year of high school that has had a profound impact on my daily life: the discipline of gratitude.

A wise woman in my church (named Vicki Allwardt) handpicked a few of us to mentor and disciple; our journey formally began on January 1, 2001 and ended when we all left for college, but I have never forgotten the wisdom that was conveyed.

She handed us all journals and asked us to write at least three things each day for which we were thankful.

 

 

 

 

 

 

 

She included verses on colorful paper about thankfulness at the front of the journal.

I faithfully wrote in mine that year and sporadically the next. The entries are amusing at first, giving insight into my eighteen year old mind (I was very thankful for boys 😉 ), but a gradual shift can be seen as I fine-tuned this discipline of gratitude.

Looking back, it isn’t the specific things for which I was thankful that had an impact: it’s that I was taught to recognize God’s hand in my life in such a simple, yet incredible, discipline.

Now, fifteen years later, I am a thankful person most of the time and I don’t even have to purposely try to think of things for which to be thankful. It’s part of who I am.

Gratefulness naturally flows out of my heart because I have trained my heart to be thankful in ALL circumstances.

This goes beyond optimism. This goes beyond happiness. This is a form of worship because you are continually recognizing God’s presence and His faithfulness all around you.

 


Always be full of joy in the Lord. I say it again—rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.[a]

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

— Philippians 4:4-9 NLT

This passage from Philippians contains SO much wisdom about how to live life, but I want to focus on these three things:

  • ALWAYS be joyful. We are commanded to be joy-filled (remember, joy isn’t happiness) at all times, in all circumstances (v.6).
  • Prayer – including thanking God for what He has done – will be followed by God’s peace (v. 7).
  • Focusing on things that are good, true, and pure (in other words, God’s character traits), and continuing to try each day to live as Christ did will bring peace (v.8).

Joy + gratitude + Godward focus = peace.


As I started to write this post I did some quick research and found a couple of great articles about this discipline, and you can read them here and here.

The first article mentions suffering and why we should be grateful even during those times:

Ingesting life’s difficulties and tragic events can be overwhelming. Having a heart of gratitude, therefore, is not about looking at the bright side of things. And it’s not even acknowledging that things could be worse. Our thankfulness is never to be based on a set of circumstances. It’s based on a Person…

…Practicing gratitude rests soundly in the assuredness that God will ultimately redeem every horrible situation in this life or the next. “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 loved this quote from the second article:

“When we discipline our hearts and our lives to see that all is grace we are filled with an overwhelming sense of gratitude for everything.” – Sam Luce

When you are grateful, you are more likely to be:

  • humble
  • joyful
  • generous with what you have been given
  • content with what you have been given
  • focused on God and His sovereignty
  • at peace

This discipline of gratitude is why Brennan and I can be so overwhelmed by God’s goodness and grace even though He allowed Tori to have Krabbe…even though He took her to Heaven at such a young age…

“…even so, it is well with my soul.”

“Your grace has overwhelmed my brokenness…”
– Hillsong

We have learned to focus on all the good He did in our lives and in the world through Tori instead of on her earthly absence.

We have learned to praise Him for the time we had with her, for the memories we made, rather than all that we won’t experience with her.

After all, what good does it do to dwell on the things we cannot change?

We are not perfect, we don’t live this out perfectly, and there is certainly nothing wrong with mourning the loss of her and the life she could have lived. We did that frequently while she was with us, mostly in unexpected moments, and I know that we will grieve her absence at times throughout our earthly lives.

But, the discipline of gratitude has brought us such peace even in the midst of a parent’s worst nightmare, because we are focused on the truth of who God is – a loving, gracious Father who loves us more than we can fathom, and who works all things for our good. He is a Redeemer, and He will redeem all of this someway, somehow. 

For now, we thank Him for all that He has done and praise Him for He is worthy to be praised.


Six years ago I had the privilege of going to São Paulo, Brazil, to observe and serve alongside missionaries there. One conversation starter they often use is this: Where did you see God this week?

It doesn’t require a super-spiritual answer. Wherever you see goodness, joy, grace, kindness, love, peace, etc. (Galatians 5:22-23) you are seeing God at work.

God IS love, and He is kind, gracious, and just, so whenever you see those things in the world, you are getting a glimpse of His character, and it gives you fresh reasons to be grateful.

We’d like to encourage you to cultivate the discipline of gratitude in your own life, in all circumstances. Look for God at work all around you and write a few things down each day. You won’t regret it.

Update: The Wall Project

As most of you know, we had set-up a GoFundMe a month ago to raise enough money to make our main living area more accessible for Tori – both for her safety (quicker access to her from the kitchen) and for new experiences for her (being in the kitchen in her stander).
   
 The project began while we were on our New England road trip…and then Tori went to Heaven much sooner than expected.
We weren’t sure if we should continue the project since the money was generously donated for *her* benefit…

…but, we realized that we needed to finish what we had started. We taught her to live life fully and to press on even when circumstances aren’t ideal, so we need to live that out in her absence.
The photos below show the progress as of today, and work resumes tomorrow morning. The framing of part of the wall is all that currently remains!
   
 As someone pointed out to us, we should finish it because we have no idea how we might be “paying it forward” – if we ever sell, who knows how this accessibility might bless someone else? ❤️
We are so disappointed that Tori never got to enjoy this new open space. Yet, we remember that Heaven is WAY better than our small living room and kitchen 😉

Tori’s Box

Months ago, as we started thinking through what we wanted to do if God chose to heal Tori in Heaven, we realized that we wanted her to be laid to rest in a simple, handmade box. Our dear friend, Dean, is an amazing craftsman, and he was honored to create “Tori’s box” (we don’t like the other term).

He brought it over today, before taking it to the mortuary, so that we could see it. And I’m so thankful that he did.

He created a beautiful, fitting box for our precious girls’ earthly body, one more incredible than we had even dreamed.

Brennan and I will be privately laying her to rest, and we’re so thankful for the knowledge that she isn’t going to actually be in there – it’s just her earthly vessel. She is running around Heaven, smiling, laughing, and being a typical girl. Despite that knowledge, I’m so thankful for the family of giraffes that will be right there with her body.

Thank you, Dean, for honoring Tori in this way. It means so much. ❤

Gratefulness 

Don’t worry about anything; instead, pray about everything.
Tell God what you need, and thank Him for all He has done.
Then you will experience God’s peace, which exceeds anything we can understand.
His peace will guard your hearts and minds as you live in Christ Jesus.
– Philippians 4:6-7

 Always be joyful. Never stop praying.
Be thankful in all circumstances,
for this is God’s will for you who belong to Christ Jesus.
– 1 Thessalonians 5:16-18

We have been overwhelmed by God’s faithfulness and His grace in all of the events surrounding Tori’s home-going – which are nothing short of miraculous.

It’s been stunning, really, even though we shouldn’t be surprised. He is a great God who loves His children.

I’m not sure I ever expected to describe a death as miraculous, but it truly was. God’s hand was so evidently working to make things happen the way they did!

Here’s the list of things we have noticed, and I’m sure there are even more that will become evident as time progresses:

  • We weren’t in California.
  • We bought the trip insurance for the first time ever, ensuring that we would get our money back from our cancelled flights to and from California, which made it easier to choose to stay home.
  • We weren’t in the van, driving back to Pennsylvania from California.
  • We were home. Together.
  • She came back to say goodbye and to give us peace with her second passing.
  • She went peacefully, in her sleep.
  • We didn’t have to invoke the DNR and make the choice to let her pass. God did it.
  • My parents were here and not in California.
  • We spent the week together traveling – something we all love – and were able to create new memories with her.
  • Brennan was with her constantly for nine full days before she passed.
  • We never had to adjust to home nursing, which would have been a mixed blessing.
  • I took many photos of her during her last days of life on earth because I was so excited about my new camera.
  • She never knew sickness – not even a cold.
  • She never greatly suffered.
  • She wasn’t on any pain medications like morphine or valium – only a low dose of gabapentin. She wasn’t in pain.
  • She was only hospitalized once, and that was to stabilize sodium, nothing intrusive.

 

God chose Brennan and me to be Tori’s parents. What an amazing, humbling honor. He could have given her to anyone, but He chose us. We are so thankful for that.

Tori’s story started on Easter Sunday 2009, when Brennan and I met at church. Her earthly life ended on Easter Sunday 2016. ❤


 

We have heard from a couple of people that the Holy Spirit was at work at the time she passed:

I wanted to write you a quick message as something quite unexpected happened yesterday. As I was sitting in church (before hearing the news) I was praying for Tori…and suddenly had a glimpse of her as a resurrected self. In that moment, I sat in awe of Christ’s hope, but had no idea how present it was.

Our church starts at 9:00am and this past Sunday it started a little late. Our daughter, who never talks about Tori but has known the whole story since she was diagnosed, saw Tori’s name on our prayer list, where it has been for over a year. She said, “It’s so nice that we pray for Tori. Don’t worry, she will be okay, Mommy.” After church, as we headed to my parents, I received the text of Tori’s departure.


One thing I realized last night was that I believe my tendinitis – which I developed suddenly about two months ago – served a greater purpose than I realized.

I developed tendinitis in my left arm from sitting and holding her for many hours each day. It got so bad that I could barely grab a water bottle, and so weak that it was difficult to hold her head up. Because of this, I was forced to lay her on her pillow more frequently in order to alleviate the pain. In the past two months, I gradually held her less and less.

I truly believe God was preparing me to never hold her again.


 

For these things – and more – we are so thankful. We cannot help but praise the One who made her, the One who so evidently put all of this into place in His perfect timing. His Word is yet again proving to be true: “the joy of the Lord is your strength!” (Nehemiah 8:10).

I have long been taught that thankfulness is the antidote to anger, jealousy, bitterness, and other such attitudes. This week I have learned that thankfulness can also lessen the blow of deep sorrow.

We will – and do – have moments of sorrow as we miss her presence here with us, but we stand in awe of our loving and gracious God who so perfectly arranged all of these details so that we could find peace in her passing.

You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.
– Psalm 139:16 –

Tearing Down a Wall (Literally)

Brennan and I purchased our first home a little over three years ago. It was built in 1954, has plenty of space (1,800 sq. ft spread out on three floors), and lots of charm.

  
It was bank-owned when we bought it and needed a great deal of cosmetic work.

Thanks to family and friends with construction experience we have managed to complete most of the necessary work in our home without having to hire contractors (we did hire one for our two full bathrooms).

One of the projects we always had in mind was to remove the unnecessary wall between the living room and kitchen. It was always in the back of our mind as a “something nice to do someday if we can afford it” project. 

But, what started as a want has truly become a need as Tori’s reliance on her (massive) medical and adaptive equipment has increased.

Here is what it looks like now (real life photo, not staged, as evidenced by the stuff everywhere 😉):

  

Some of the difficulties this wall has presented in our daily lives and care of Tori are these: 

  1. Tori’s equipment cannot fit through the narrow doorway so she is confined to the small living room.
  2. If I am trying to cook, prepare her bottles, or do anything in the kitchen, it is very difficult to get to her quickly when she needs immediate care.
  3. I cannot see her when I am in the kitchen at all, so I rarely go in there when I am by myself with Tori (i.e. meals don’t always happen).
  4. We cannot eat meals as a family at our dining room table because Tori’s stander (or stroller) cannot easily fit through the doorways.

   

Recently a friend of ours with construction experience asked if we had any side jobs we needed to have done and we presented him with a list of everything we could think of that has remained unfinished because of Tori’s illness. 

We only have a small amount of money saved up for house projects so we told him he could do whatever would fit in that budget (not much).

I began thinking about the wall coming down on Friday morning and talked it over with Brennan and our friend. We decided it needed to be our greatest priority, even if it became the only project on our list.

Since we are going to California this month we asked our friend if he could possibly do it while we are gone (to keep Tori out of the dust), and he said yes.

Brennan and I took a leap of faith and set up a GoFundMe page to hopefully raise the $1,500 estimated cost to remove the wall, move the duct work and electrical components, build a support column, and figure out a solution for the floor that would now be exposed where the wall used to be.

We had never before asked for donations for anything so we weren’t sure how well our campaign would do.

Within three hours over $1,500 had been raised! Praise the Lord! 

So, we talked about it and raised the goal to $2,500 which would allow us to also completely replace the kitchen flooring so that it will match the living room floor in height and color (currently it is higher than the living room which also presents issues for her equipment on wheels).

Last we checked over $2,000 had been generously donated! 

We still can’t believe that we are going to come home from California to an open living room and kitchen…a space that will be so much better for Tori in so many ways!

We can’t wait to eat dinner at our dining room table as a family, to cook with Tori by my side, and to overall provide a better space to care for her needs.

Thank you all for your support and contributions – we will keep you posted on the progress! ❤️