Child Loss

Twenty-Three Weeks

/ lesabrackbill / 6 Comments

Not long ago I opened the calendar app on my phone and counted the number of weeks between Tori’s birth and the onset of Krabbe. I was surprised to find that she became fully symptomatic at exactly twenty-three weeks. To the day.

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Last photo of Tori smiling, taken at age 22 weeks 6 days (January 6, 2015)

That’s how old the boys are today.

Our healthy, strong, Krabbe-free identical twin boys are the same age today as Tori was when a horrific disease began to steal everything from her – her smile, her laugh, her ability to swallow, and eventually her life.

Twenty-three weeks.

As I was typing this, I momentarily thought “I wish I would have known that she’d never smile again so I could have treasured it.” But my next thought was, “Hmmm…would I really want to know?”

So often we say that we would, but is it ever a good idea when it’s something we can’t change? I think in most instances we’d end up worrying so much about what was about to happen that we would be unable to be fully present. Instead, I will treasure the smiles she did have as well as the smiles from her brothers each day.

I have been asked many times if I think I have some degree of PTSD, and after considering the question, I can honestly answer no. Sure, there are things that will never be the same about me – or my parenting – after Tori (for instance, I definitely check to make sure the twins are breathing far more than I expected to do), but I most certainly do not have PTSD. Brennan would tell you the same. We are living in joy and peace.

And that leads me to wonder why.

Why are we okay when so many who’ve walked in our shoes aren’t okay?

I had a conversation with my chiropractor during my most recent visit and it helped me in unexpected ways.

She remarked that she has loved seeing how Brennan and I have walked through this journey with grace and joy (we take no credit for that), and she loves how we’ve chosen to live out our faith. Her encouraging words (and great adjustment) would have been enough, but the Lord chose to continue to speak through her.

I told her that I often wonder why Brennan and I seem to be set apart from so many who have lost children, how we seem to be handling it so differently than most, even than other believers.

It’s not that we never think or talk about Tori (quite the opposite). She’s very much a part of our home and we will make sure the boys know everything about their big sister. It’s not that we’ve “gotten over it” because you really don’t ever “get over it” when you’ve lost a child.

(Side note: who defines what that actually looks like? Who makes the rules? Not getting over it doesn’t have to mean crying all the time or living your life depressed. It simply means that you are never the same, but it has such an unnecessarily negative connotation. We will never “be over” losing Tori but we also choose to live the life we think she’d want us to live – she’s in Heaven, happy as can be, so why wouldn’t she want us to live in joy?)

I expressed to her that I feel sorry (not pity, but genuine sadness) for those who can’t move on, who cry daily, who can’t seem to find joy in their lives after a tragedy like child loss. I mentioned my blog post about not visiting Tori’s grave. That we’re different but I can’t figure out why. That I wonder if we’re “doing it wrong” because we’re genuinely doing well and so many around us aren’t.

And then she said this: “it’s because you don’t let it define you. It’s because you find your identity in something (someone!) greater.”

In that moment, it clicked. She is totally right.

It’s not my identity. I’m not a victim, and I’m not a martyr.

Yes, I lost a child. Yes, it was terrible.

And yet, losing Tori doesn’t define me.

Did it impact me? Of course. But that’s not what defines me. The love of God (and my love for Him) defines me and my life. His mercy and grace overwhelm me and fill me with abundant gratitude. His faithfulness reminds me that we will see Tori again in Heaven for an ETERNITY. In a perfect place. With perfect bodies. No Krabbe. Forever.

I could elaborate more, but I already did in Even So, Joy 😉

We all have to choose what defines us, and I choose to NOT be defined by child loss. ❤

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As I watch Tori’s brothers today, I am amazed at their strength, at their smiles, at their health. They are doing things that Tori was never physically able to do – before or after Krabbe – and each new achievement is worthy of celebration. Every milestone reached fills us with awe.

That’s why I wanted to count the weeks.

That’s why I wrote a note on the calendar to pay attention to their development at twenty-three weeks.

Not because of PTSD. Not because of grief.

But because I am so indescribably thankful for God’s blessings to us. For his faithfulness. For His love. For every smile that these precious boys display. Everything. I don’t deserve this abundant life He has given to me, but I will embrace it and praise Him for it.

Even so, it is well with my soul. ❤

Why We Don’t Visit Tori’s Grave

/ lesabrackbill / 9 Comments

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

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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/

Motherly: https://www.mother.ly/news/viral-pictures-show-dad-doing-skin-to-skin-with-his-twin-babies-for-a-very-good-reason

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

Even When Plans Fail, There’s Joy…

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This entire book process has made us laugh so many times because nothing has gone as expected.

But, our launch party was going to be smooth and perfect! The plans were set and everything was going to happen as we expected…

Or not 😉

When we arrived at the venue, no one was there to open it for us. We waited and waited, tried to contact the owners (who are out of town and this isn’t their fault at all!). It was cold and rainy, but we thought we could just do it in the courtyard outside the cafe.

Brennan’s sister, Kelly, had the idea to go around the corner to the movie theatre (CocoaPlex) to see if they could help, and they said we could set up in the lobby! 🍿 🎥 So we made a note (thanks, Gina!), moved our party over there, and had a great time! We had wanted a unique venue, and how much more unique can you get than the lobby of a movie theatre?! 😉 And, it was FREE, so we appreciated that!

We just happened to have a table in our van that worked well for signing books, and the bench in the lobby made a perfect display area.

As my book says many times, joy is a CHOICE, and tonight we chose to roll with the unexpected and make the most out of the evening…and it was GREAT. ❤

Thanks to all who came out to celebrate with us! Thanks to Karen for the amazing cupcakes! And huge thanks to CocoaPlex for allowing us to use your lobby!

 

 

Reminders of Krabbe and Choosing to Be Joyful

/ lesabrackbill / 2 Comments

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 ❤️

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.”

/ lesabrackbill / 4 Comments

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. ❤️