Tori’s Day of Triumph – March 27th

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Next Tuesday is BIG – it’s the second anniversary of Tori’s “relocation” to Heaven and we have so many awesome things in store for her Day of Triumph/Triumph Day!

  • Lesa’s radio interview with Autumn Miles airs (3:30pm in Dallas (100.7 FM), but online as well)!
  • Tori’s Triumph” – the documentary by Blink Motion Productions – debuts online! We will post a YouTube link that day, or you can look for it (and watch the trailer) here.
  • Even So, Joy” book launch party in Hershey! 6:30-8:30pm at the Cafe on Cocoa (1130 Cocoa Avenue, Hershey), and we will go LIVE on Tori’s Facebook Page at 7:00pm during the Q&A portion of the launch!  
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    If you haven’t already purchased Tori’s story in book form, it’s on all major book websites (Amazon, Barnes & Noble, iBooks, CBD, etc.) and we will have copies at the launch party for purchase as well. 
    Lesa Brackbill, Author is my official Facebook author page if you want to follow it!

    We are going to celebrate that Tori has been Krabbe-free for TWO YEARS, that she has been able to laugh, smile, run, play, EVERYTHING she couldn’t do here on earth, and we hope that you will join us! ❤ And please help us spread the word – we’re fighting against social media algorithms and need your help!

“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. ❤️

Unexpected Emotions

I (finally) received my first copy of my published book today!

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As I held it in my hands I was overwhelmed by two emotions: joy and heartache. 

How fitting that the quote I chose for the back of the book talks about that very conflict.

I felt such joy at knowing that my hard work had paid off, that Tori’s story was finally being told in more depth than ever before, and that new people will learn about her and about Krabbe. I’m finding such unexpected joy in being able to say I’m an AUTHOR. 

But, then I was filled with sorrow because I never should have had to write this book in the first place. No one should lose their child, especially to a disease like Krabbe. I would do anything to have Tori back, healthy, running around like an almost-four-year-old would be doing. Anything.

I allowed myself to embrace the tears (likely also caused by pregnancy hormones 😉 ) for a few moments and then I reminded myself of what I know to be true: that all is well. And I focused on the joy that she brought to our lives, the knowledge that she is in Heaven and we will be with her soon (but not quite yet, as Jim Kelly likes to say), and on the fact that God is going to continue to use her – and us – to save lives as we fight on for Newborn Screening for Krabbe. 


As of now, my book is sitting at #1,336 overall on Amazon. That sounds far from #1, but it’s far higher than 8,000,000 (the number of books for sale on Amazon). It’s also the #1 new release in the Christian Families category. And we are blown away. While we don’t yet know how this translates into numbers of books sold, we’re humbled at these stats.

Numbers matter because Tori matters, because increased awareness is based on the number of people who know about Krabbe, and because numbers will generate revenue for us to donate to Hunter’s Hope. 

So, if you haven’t picked up a copy (or several), please do. It would mean so much to us.

Here’s the Amazon link!

It’s Not About The Money

Cover_lNow that my book is available for pre-order, it feels slightly weird to promote it. I worked for nearly three years on this project, and yet I am hesitant to post about it.

Most of us are raised to be humble, to not ever come across as self-promoting or a braggart. We’ve somehow received the message that you can’t talk about the things you’ve done. The problem with this is that there’s a difference between arrogant bragging and joyful accomplishment. 

One of my favorite authors, Jon Acuff, has talked about this many times. To paraphrase him, if I don’t share about my book/work, WHO WILL? 

One of the aspects that makes it far easier to share about my book is this: I am making hardly anything off of it. Does that surprise you? Most authors make around 10-20% from the purchases of their books. Brennan and I will make less than $2 per book before taxes, AND we’re donating a portion of that $2 directly to Hunter’s Hope Foundation. 

For us, it’s not about the money – it’s about the mission.

The mission is to make Krabbe known by any means possible, to hopefully increase awareness and multiply the Newborn Screening states (currently only SIX screen), and to provide as much money to Hunter’s Hope Foundation as possible as they advocate for Newborn Screening and support leukodystrophy families.

And, of course, to tell Tori’s story in hopes of encouraging others.

That’s why I wrote this. 

It’s not about the money (though we wouldn’t complain, of course! 😉 ) – it’s about awareness.

So, if you’d like to purchase Even So, Joy you can do so directly through the publisher (for now) or through Amazon.

You may see me posting about this often, and that’s simply because of the algorithms of Facebook and other platforms. Some see all my posts, some see none. By posting often, I hope most will see it at least once!

Please help us spread the word and #MakeKrabbeKnown and leave book reviews on Amazon, Barnes & Noble, GoodReads, etc. once it’s available!

Use the hashtag #EvenSoJoy if you share on social media!

Pregnancy and Parenting After Loss

I’ve mentioned before that ever since Tori went to Heaven I’ve felt quiet, as though I have nothing to say. And so I’ve stayed quiet, not wanting to force the words just for the sake of writing.

Well, I finally feel as though I have something about which I can write.

Pregnancy and Parenting After Loss.

As the date for our embryo transfer draws nearer, I have so many thoughts and feelings running through my mind and heart. We will be pregnant soon! I honestly feel like I’m already “nesting” even though I’m not even pregnant yet. Brennan can attest to this, haha. Granted, that’s partially because we still haven’t really moved into our house yet and I’m ready to be SETTLED. But I digress. My heart longs to be pregnant, to have the hope of future children.

I just want to be a mother again, to hold and care for these precious babies who are currently frozen. 

But there’s a lingering fear that I can’t quite chase away – a fear that one or even both of the embryos won’t attach. That I will miscarry. That we will have two or three children in Heaven and not just one. There’s little reason to think this will happen, says my doctor. I’m healthy, fertile, and have no reason to believe that the embryos won’t attach. We’ve seen how God has moved mountains to make this even possible. So why are these fears so present?

I have a feeling that parenting any child after losing Tori is going to be a greater blessing than we can imagine and yet contain the potential for greater fear than we’ve ever had before. Any symptom that reminds me of Krabbe. If they have reflux like we thought Tori did. If they have any developmental delays. Anything like that will have the potential to throw me back into the pre-diagnosis days with Tori, wondering if the genetic testing was wrong. Wondering if they do have Krabbe. I have a feeling this will be a challenge to overcome.

I’m not one to be fearful, really ever. I trust the Lord and I believe that He has me in His hands. I believe that He is in control and that He knows exactly what will become of these precious frozen embryos. So I must surrender, moment by moment, any fear or doubts that creep into my mind, because I know that they aren’t from Him. 

I will continue to process my thoughts and emotions about all of this as we progress though pregnancy and parenthood after losing Tori. I pray that my transparency is a blessing to others and that the Lord will continue to work in and through our lives.

Please pray for our embryos – our son and our daughter: pray that they will survive the thaw, that they will attach to my uterus quickly, and that they will develop into healthy, thriving babies. September 1 is quickly approaching! 

 

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!