Three Years: Tori’s Resurrection Day

It’s amazing that it has already been three years since our precious Tori entered the arms of Jesus.

Today could be a devastating, sad day. We could choose to dwell on what we “lost” that day, how our world changed, and that would be an acceptable way to spend the day given the circumstances. I mean, we did lose a child. The world would understand. But, as always, we choose to place our focus on where she is and how she is doing, as well as the fact that we will see her again someday and will never have to say goodbye.

Instead of the worldly form of grief, we choose peace.
Instead of blaming God, we choose faith.
Instead of tears, we choose joy.

We decided two years ago that we would always spend Tori’s Resurrection Day (also called Tori’s Day of Triumph) doing something fun as a family. The activities may vary from year to year, depending on the age of her siblings and their interests, but we want to always celebrate her life and her current/forever place of residence.

So, today we had breakfast at Cracker Barrel and had some fried apples (something she LOVED) together:

We went to see Tori’s tree at the Hershey Gardens for our second annual family photo in front of the tree:

We read “I Can Only Imagine: A Friendship with Jesus Now and Forever” to the boys – something we will do each year as we teach them about Tori, Heaven, and faith in Jesus.

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But most importantly, we enjoyed our time as a family:


I promise we aren’t perfect Christians, nor are we perfect people. We sought out the biblical examples of living after a loved one’s death, and we believe that this is how we are to live. The New Testament, especially, is FILLED with verses about death of fellow believers and how Christians should respond, and it’s always referenced with joy. With peace.

We trust that the God who created the universe can be trusted with every detail of our lives, even when we don’t understand the reasons. 

(If you’d like to hear me go more into depth about this and more, here’s a link to a speaking engagement I had in January. You can also read more in my book, Even So, Joy.)

One of the questions I ask in Even So, Joy is this: If we (as followers of Jesus) truly believe God and His promises, if we truly believe that Heaven is where we belong and where we will spend eternity, then why do we follow the world’s example and allow sorrow and grief to overcome us? It doesn’t have to be this way. 

Would anyone CHOOSE to lose a child? Absolutely not. And yet, we CAN choose our reaction and how we live our lives afterward. We see the example of David losing a child (albeit to very different circumstances) in 2 Samuel 12 and his response:

19 When David saw them whispering, he realized what had happened. “Is the child dead?” he asked.

“Yes,” they replied, “he is dead.”

20 Then David got up from the ground, washed himself, put on lotions,[b]and changed his clothes. He went to the Tabernacle and worshiped the Lord. After that, he returned to the palace and was served food and ate.

21 His advisers were amazed. “We don’t understand you,” they told him. “While the child was still living, you wept and refused to eat. But now that the child is dead, you have stopped your mourning and are eating again.”

22 David replied, “I fasted and wept while the child was alive, for I said, ‘Perhaps the Lord will be gracious to me and let the child live.’ 23 But why should I fast when he is dead? Can I bring him back again? I will go to him one day, but he cannot return to me.”

David got up. He worshiped the sovereign God he knew and trusted. He knew he would see his son again someday and chose to live life.

I think about it this way: If it were me that had died, I would NOT want my parents to stop living life. I would not want them to visit my grave (or, as we call it, Resurrection Site). I would want them to remember that the separation is not forever, that I am where we all, as Believers, are supposed to be. That I am finally HOME. 

Brennan and I chose then – and we choose now – to focus on Tori and how amazingly she is doing now. Tori can SMILE. Walk. Talk. Breathe. Play. Be with Jesus. How incredible is that?! Our precious baby girl was so broken here on earth; now she is healed and WHOLE. That is more than enough reason to rejoice!

Brennan and I know and believe that Heaven is real, that she is having an amazing time, and that we will join her someday. Every day is one day closer to that reunion!

You may not be in a situation like ours, but we all have our own challenges and life struggles. No matter what our circumstances, we each have a daily decision to make, a choice for how we view our journey; we have the opportunity to choose for it to be well with our souls and to focus on things above, not on earthly things (Colossians 3:2).

Every day, we each have a decision to make: where is your focus?

The Joy of Not Knowing

In our culture of Google bringing instant gratification to our curious minds, not knowing the answer or what is going to happen in life typically makes us feel anxious, unsettled. We think that knowing everything when we want to know it is the key to peace.

I don’t believe that is the case.

I write about this today as I am reflecting on March 26, 2016. We had no idea that would be our last day with Tori on this earth. Part of me wishes I had known…but, then I wonder for what purpose? So we could have treasured her more that day? We already did that well. So we could have been more “prepared” to say goodbye? We’d been preparing for fourteen months.

No, I think it’s this: Knowing would have helped us feel like we were in control of an impossible situation instead of trusting the One who actually IS in control.

I like being in control. I like when things go my way (I recently discovered that I’m an Enneagram 1 and I think I’ve accepted that 😉 ). But living like that doesn’t require faith. It doesn’t require trust. Why have faith if we’re going to just take control ourselves?

In this instance, I am certain that knowing the day and time of her final breath would NOT have brought peace. It would have brought anxiety. Instead, our sovereign and gracious God shielded us from that information and I’m so thankful. 

He was gracious to give us warning signs for about six weeks before she was set free from her earthly body. In the end, that’s all we really needed. We see that now.


Another way I’ve seen this idea of “not knowing being okay” play out is in regards to Newborn Screening.

The Pennsylvania NBS Advisory Panel has spent countless hours discussing the ethics of screening for certain diseases – ones with no treatment, specifically. They ponder whether or not it’s the right thing to tell parents that their child may someday develop a disease for which there is no treatment or cure. They wonder if they should screen for such diseases or leave it a mystery.

You may wonder why they would do that, as did I at first, but now I see it this way: if parents find out that their child will someday become symptomatic with a disease for which there is no treatment or cure, is it better for them to know (which will rob them of joy during the healthy times and fill them with worry and anxiety), or to wait until symptoms occur? They can’t change the situation either way, so for some diseases the panel believes that the ethical thing to do is to NOT screen until a treatment is available. And I believe this is the right thing to do.

Knowing doesn’t always bring peace or joy. Sometimes ignorance truly is bliss.


As followers of Jesus, we must trust the One we serve. We must trust that His way IS the best way, even if it doesn’t feel like it in the moment. He must be the source of our joy, even when things in life do not go as we would prefer.

If we TRULY believe that God is sovereign, good, gracious, faithful, trustworthy, capable, then do we actually need to know everything? No. What we need is to put our faith into action and surrender that need. Faith brings joy, deep and unwavering joy.

Someday we’ll know, and we’ll praise Him in retrospect; but, I challenge you to praise Him now, in the uncertainty, because HE is certain and HE loves you. 

H.B. 730 – Time to Take Action

PENNSYLVANIA – it’s time for action!

We’ve been waiting (not so patiently) to be able to tell you that we have important legislation that will be introduced VERY soon, and if it is signed into law (which is likely given the broad support we have) Krabbe will finally be mandatory by default.

Hannah’s Law (Act 148 of 2014) was created to make screening for Krabbe mandatory; however, it has yet to be fully implemented because PA’s NBS system is broken.

This bill will not only fix Pennsylvania’s broken NBS system and ensure that EVERY baby is screened equally (right now your zip code determines what diseases are included on your baby’s NBS panel), but it will fully implement Hannah’s Law at last.

What can you do? If you live in Pennsylvania, you can send a note like the one below (or copy/paste if you want) to request that your legislator CO-SPONSOR the legislation.

It will be called H.B. 730 – in honor of Tori’s birthday ❤ We were so surprised and honored by that!

If you share this post PLEASE make sure our text accompanied it. Otherwise it will just be the link to the memo.

If you want to copy/paste the following, feel free! You can find your representative’s info here: https://www.legis.state.pa.us/cfdocs/legis/home/member_information/contact.cfm?body=H

Dear ___________,

My family and I are residents of your district and wanted to make you aware of a bill in hopes that you would sign on as a co-sponsor.

https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=28612

It will be numbered H.B. 730, the numbers representing a precious girl’s birthday. Victoria Brackbill passed away from Krabbe Leukodystrophy in March 2016 at 20 months of age. Her life could have been saved had she been screened for Krabbe at birth.

Victoria’s family has been working with the Dept. of Health, Rep. Cruz (who authored Act 148 of 2014), Dr. Levine, and others over the past few years to help them to see the weaknesses in Pennsylvania’s Newborn Screening program, and they have listened. The fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole.

Pennsylvania currently ranks 2nd to LAST in the nation for the number of diseases for which every baby is screened. As you will read in this memo, your zip code determines life or death if you’re born with one of these diseases that can be treated if caught at birth. That is simply unacceptable and we’re seeking to change that.

This isn’t a partisan issue – this is a human issue.

If H.B. 730 is signed into law (which is likely will be as the Governor also supports our efforts), Krabbe will become mandatory by default. More importantly, though, every single baby born in Pennsylvania will be screened for the exact same diseases and have the same chance at life as all the other babies.

Thank you in advance for your consideration, and hopefully your support.

Twenty-Three Weeks

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. ❤

Even When Plans Fail, There’s Joy…

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

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!