So, We Missed a Wedding Today

We left our friends' house in the Lynchburg, VA area for Raleigh around 10:30am today to attend our friend Breanna's wedding. We allowed for plenty of time to get there and were enjoying the beautiful day.

We stopped along the way at a CVS to get a few things; I came out of the store, put the key in the ignition and I couldn't even turn the key. It was bizarre.

Brennan tried, I tried, and finally, after replacing the battery in the key fob, we called AAA. By this time it was noon, and the wedding was just two hours away (and so were we). They said it would take ninety minutes or so for a tow truck to get to us.

We were going to miss the wedding.

After a few minutes of being grumpy and frustrated, we decided to make the most of our day. It was a great temperature, not a cloud in the sky, and we happened to have camping chairs in the van!

We got some strange looks from people, understandably, but whatever. 😄 We were comfortable and having fun.

A kind woman with four children (including a four week old baby) asked if we needed any help and offered her jumper cables – too bad our battery was SO dead that it didn't work. Still, her kindness was so appreciated! She was the only person to offer assistance.

When the tow truck arrived (just as the last of our shade was disappearing) we realized that there weren't any open repair shops around! Thankfully we found one and they were able to fit us in.

The van was done by 4pm, so we missed the wedding entirely. While we aren't happy about this, today was another reminder that we have a choice to make every situation joyful or miserable.

We had a good day despite the disappointing outcome of missing the wedding. We chose to look for the positive and found a lot of things for which we could be grateful! ❤️

  1. It was breezy and nice.
  2. We had chairs in which to sit.
  3. We had access to a restroom!
  4. We had a AAA membership.
  5. We had water and food.
  6. We had an opportunity for quality time.
  7. We made memories together.
  8. The repair was not expensive!

Remember in moments like this that it's going to be okay, that someday you will look back and laugh, and that there's always something for which you can be grateful. ❤️

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

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. ❤