I just noticed that Amazon dropped the hardcover price by 52% today!
Hurry to get your copy of Even So, Joy before they raise the price again! 😍🦒
Order here!
Krabbe
Why We Don’t Visit Tori’s Grave
We’ve never written about this before, but I think it’s important.
Let me preface with this: we know many people do things differently than we do so there’s no judgment at all. Everyone needs to do what their hearts need for healing.
This may surprise some of you, but we don’t visit Tori’s burial site (resurrection site, as we like to call it).
We don’t decorate it, we don’t spend time there. In fact, the only times we’ve been there were to show out of town visitors where it is, as it’s difficult to give directions.
It’s been nearly two years since we’ve gone there, and the reason is likely not what you think.
We feel no need to go there because SHE ISN’T THERE. Her soul is in Heaven, and we don’t need to sit at her grave to be reminded of that.
We don’t decorate it for holidays or leave anything there because she isn’t there, she won’t know we did that, and it doesn’t feel necessary to us.
If you’ve read Even So, Joy you know that we believe that death isn’t something to be feared or held onto – it’s a temporary separation and we will be reunited again!
So, for us, it never even crosses our mind to go to where her broken, earthly body was buried. We’d rather focus on changing the world around us and choosing joy as her legacy.
Brennan and I don’t always feel free to express our perspective on how to deal with child loss because we seem to be the minority. We feel like we have to stay quiet because we are doing so well.
But, here’s our perspective:
If I consider this situation from a different angle, the way to live is obvious.
If I were the one in Heaven, how would I want my parents to live? Would I want them to stay in bed, crying every day, wasting their life away, or would I want them to LIVE an abundant life because that’s what I would be doing in Heaven?
I’d want them to LIVE. To have JOY because of the impact I had on their lives. I’d want them to celebrate my life, not dwell on my absence.
This is how we view our life now that Tori is in Heaven. Our joy doesn’t come from her absence – we have joy because she existed. Her death didn’t change me – her existence did.
Tori comes up in conversation daily, especially now that we see so much of her in her little brothers. We think about her all the time but those memories bring joy, not tears.
I don’t believe that our loved ones can see us from Heaven, but if they can I certainly wouldn’t want Tori to see us wasting this short life we’re given. I’d want her to see us making the most of it, joyfully, just like we would if she were with us.
Tori may not physically be here, but we don’t have to go to her grave to see evidence of her impact. We see it every day in her brothers, in our memories, and in the legacy she has.
As tragic and horrible as it is, I don’t believe that child loss has to derail our entire lives. Shape it, yes. Ruin it, no. It’s a choice that has to be made daily, and we choose to be joyful. ❤️
If you’d like to get a copy of “Even So, Joy: Our Journey through Heartbreak, Hope, and Triumph” you can do so here.
Going Viral
We were so blessed to have the amazing Erin Fortney Photography capture the birth of our twins because it has made me feel like I was more involved and actually present in the room after delivery.
One of the photos she posted garnered a great deal of attention, to all of our surprise:
We love the photo and what it represents, but we didn’t expect what happened next. We were amazed to be contacted by so many reporters regarding our story and it went viral.
They were enamored with Brennan’s persistence in doing skin-to-skin in the O.R. (which to us is interesting because it wasn’t a question in our minds that he should have that experience with the boys, as well) and we definitely talked about that, but we also recognized the potential for Krabbe awareness and made sure they focused on Tori and her story, as well as Newborn Screening. THIS is our true passion in life!
Here’s the current list of publications that have written about us:
Babble: https://www.babble.com/parenting/skin-to-skin-dad-twins-photo/
Love What Matters: http://www.lovewhatmatters.com/six-weeks-later-she-was-handed-a-death-sentence-how-dads-amazing-skin-to-skin-contact-with-twins-helps-heal-family-after-devastating-loss/
Birth Becomes Her: https://www.facebook.com/56901132/posts/10100975465821040/
CafeMom: https://thestir.cafemom.com/parenting_news/212461/dad-skin-to-skin-rainbow-twins
People: https://people.com/human-interest/brennan-brackbill-skin-twin-sons-death-toddler/
The Epoch Times: https://m.theepochtimes.com/uplift/father-gives-his-newborn-twins-a-shirtless-hug-right-after-theyre-born_2544565.html
The Daily Mail: http://www.dailymail.co.uk/femail/article-5849873/Pictures-father-cuddling-newborn-twins-skin-skin-delivery-room.html
Huge thanks to Erin Fortney for this image and for the write-up on Birth Becomes Her that started it all ❤ :
Dad had requested skin-to-skin in the OR from the moment that he stepped foot in the hospital… he must have mentioned it a dozen times.
He + his wife were preparing to welcome twins in to the world after losing their first-born to Krabbe Leukodystrophy at the young age of 20 months.
Staff told him that it would be tough since he would have two babies and needed to be in a scrub suit over his clothes … So he promptly and without question explained that he had a large arm-span that was ready and waiting to hold his two boys and then took his shirt off and zipped up his scrubs announcing, ‘well then.. problem solved!’
This nurse made sure to advocate for him to all 24 other people in the OR that day — and personally made sure that his request was fulfilled.
– Erin Fortney
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. ❤️
Unexpected Emotions
I (finally) received my first copy of my published book today!
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.
