Reminders of Krabbe and Choosing to Be Joyful

There will always be reminders of Krabbe and its effects on Tori in the least expected places.

The other night, for instance, on The Good Doctor, they had a patient who was unable to smile because her cranial nerves were not working properly.

Just like Krabbe.

This is just one example, of course. These situations always catch us by surprise, and it’s hard to believe that even just four years ago something like this wouldn’t have phased us. We would have enjoyed the episode of the show but it wouldn’t have made us think about anything else.

When times like this happen, we have a choice: focus on what Krabbe stole from her – and us – with sadness, or focus on all that Heaven restored to her with joy.

And, as always, we choose joy.

Her smile was amazing, even though we only saw it for five months. I think we will appreciate her brothers’ smiles far more because of this. Each smile, each expression…such joy.

We remember her smile with such love and eagerly await seeing it again soon – but not yet ❤️

“She was abnormal from birth, you just didn’t know it.”

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.

As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️

Completely Different

I haven’t changed my phone wallpaper in almost two years.

My dad captured this moment only a couple of days before Tori went to Heaven and it’s the last non-selfie photo I have of me and her together. I have had no desire to change it because it’s comforting to me. I like that it’s always there, easy to find, and that it represents the deep trust she had in me.

I like that it’s the same photo day after day.

This pregnancy has been both similar and different to my pregnancy with Tori. In many ways, though it was still relatively easy, hers was more complicated.

Both pregnancies were/are easy in regards to no morning sickness, little discomfort, no swelling, etc. I do not take it for granted that my body seems to like pregnancy!

But there are some major differences:

  • I had gestational diabetes.
  • I had excess amniotic fluid (because of the GD).
  • I gained over 30 pounds.
  • My hips caused me pain constantly.
  • She would sleep through non-stress tests, triggering multiple ultrasounds each week.
  • I tried to deliver her naturally and ended up having an unplanned c-section.

When we found out that we were having identical twins (mono/di), we immediately assumed that we were in for a rough ride.

And, thus far, we’ve been completely wrong.

  • I passed my glucose test!
  • My fluid levels are normal.
  • I have only gained 20 pounds.
  • My hips only hurt while trying to sleep.
  • We will see about the non-stress tests, which start at 32 weeks 😉
  • Even though I have ultrasounds every other week, everything is going as smoothly as possible! No complications; good, steady growth; very active; healthy boys.
  • This c-section is scheduled, and I am happy about it this time!

I had prayed that God would let us have the easy road this time, and while we’re not in the clear until they are born, so far He has blessed us with a normal pregnancy, and we are beyond grateful. I needed this.

(25 weeks and 29 weeks)

We’ve begun to realize that everything about what’s going to happen in April is completely different than with Tori.

  • Boys, not a girl
  • Two, not one
  • No Krabbe, no genetic issues

And we need these differences, too.

Because it will be completely different, there will be less temptation to compare them to Tori. She has her place in our hearts and they will have theirs. ❤️

We have no reason to fear the future with the twins and yet we are going to be waiting…for the NBS results, for the 5/6 month mark (when Tori’s symptoms surfaced), for them to surpass her life of 19 months and 27 days. I think until we hit that mark we will wonder if the genetic testing was wrong, if the Newborn Screening was wrong, if things are going to be the same as they were with Tori.

The boys are going to learn to crawl, talk, walk, run, play…things we can’t even imagine because Tori was robbed of those opportunities. I can’t wait (and yet I can) until they are mobile and able to get away from us – something Tori never could.

Usually the status quo brings comfort; in this case, the differences are refreshing. And we need them.

I wonder what I will do and how I will feel when the boys are here in regards to my phone wallpaper. I imagine that will be an emotional moment, even if the new photo incorporates Tori in some way, because it will be a reminder that she is in Heaven and not here with her brothers.

But, as we move forward in our new adventure, we know that things are going to change, that change isn’t bad; that things are going to be new and wonderful, even if bittersweet, and we will learn to embrace the change and the joy that these precious boys will bring to our lives.

And we can’t wait. ❤️

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.


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.