Tori

Isaiah and Caleb’s Adventure List

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When we started to create a “bucket list” for Tori, we knew time was short. We knew we had to cram as much into her limited days on earth as we could, and we did. We completed fifty adventures and it brought so much joy to us. We won’t know what she got out of those adventures until we get to Heaven, but for us, they were a huge deal and we loved every second.

After the boys were born I was thinking about Tori’s list and I told Brennan that we should do the same adventures with the boys (though not in just a nine month time frame – spread out over their childhood) since these are things we would have waited to do as a family if our circumstances had been ideal. He readily agreed.

Though we are doing them separately, it feels like she is a part of these memories, and we can show the boys the pictures of Tori doing each adventure as we do them. ❤️

So, tonight we did the first thing on the list: Build-a-Bear. Thanks to their “Pay your age” promotion, we spent a total of $2.12 for these memories 😊

Here’s the link to Tori’s experience there.

We tried to let the boys pick out their own animal (which we knew would be challenging because they just like to look at everything!) and we ended up choosing the ones at which they smiled the most.

Truthfully, they were more interested in the stickers they were given than the animals 😂

Seeing the wonder and joy in their eyes and hearing their laughter fills us with joy like none other.

Even though they don’t care about their new animals just yet, someday they will and we can tell them this story. ❤️

Three Years: Tori’s Resurrection Day

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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

/ lesabrackbill / 2 Comments

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

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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.

Choose to See Beauty

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I love fall, so when I heard we were going to get several inches of snow in mid-November I was incredibly disappointed.

The last time this happened, it knocked all of the colorful leaves off of the trees prematurely, and our fall was cut short. It’s already such a short season so to have it made even shorter was frustrating.

We have a glorious red tree in our backyard and I was not thrilled that the leaves would now be covered with snow.

November 14, 2018
November 15, 2018

However, this morning I noticed that the melting snow actually made our tree and its leaves even more vibrant. The cold, white undesirable, snowy background highlights the beauty of the red leaves more than the lush, green grass does.

Do you see where I’m going with this? The analogy was too perfect to pass up.

I’m obviously not just talking about leaves.

This is a perfect example of how there is beauty in the broken.

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In life, when bad things happen or things do not go the way we think they should, we can choose to see it two ways: we can focus on the bad, ignoring the beauty around, or we can notice how the good shines even greater in the midst of the bad.

We would not appreciate the good if everything were always perfect – we wouldn’t realize that life could go any differently! But, when less than perfect conditions arise, it gives us an opportunity to truly appreciate life and the joy that it brings.

Our family will never feel whole because we will always be missing one. Tori is living an abundant, full life without us right now and we will join her someday. But, what we endured has made us find so much MORE joy in the life we have now. The twins may be challenging at times, but they are such a blessing and a joy, and we appreciate them so much more because their sister existed and was taken away from us (#KrabbeSucks).

Believe me, I am not happy about the snow (and I am not happy that Tori had to go to Heaven so soon). But, I choose to allow it to help me see the beauty in the life that I do have, instead of focusing on what the snow has taken away.

I’m sure you’ve seen this meme before:

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It’s so true. So, this winter, as much as I am dreading the cold and the snow, I will remember this as often as possible. I will choose to (somehow) find joy in the snow. ❤

How Jon Acuff impacted my life in ways I didn’t expect

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Today is the five year anniversary of a conference that changed my life unexpectedly.

The five-year mark has made me feel reflective, and it has made me realize how much of an impact the conference – and the author who started it – truly had on my life. Looking back, I see that God definitely aligned the timing of his books and teachings with what was going on my life.

At some point years ago, I discovered a blog and a book called “Stuff Christians Like” and I thought it was hilarious. I started following Jon Acuff and his writing.

A couple of years later, Brennan and I read Quitter and then attended the Quitter Conference in Nashville (2012). At that point, I didn’t know what I wanted to do with my life or what my dream was, but I now had some tools to help me figure it out. I knew whatever that dream was, I wasn’t doing it.

Then came the infamous email five years ago (2013) asking for adventurers that led to the Start Experiment and the amazing community that developed there.

The experiment offered practical steps over the course of a few weeks to finding and implementing your dream (this accompanied the book Start). I started by working on self-discipline as I pondered what my dream really was. I blogged about the experience along the way.

Eventually, I figured part of it out, mostly thanks to The Start Conference – which was five years ago today:

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Telling the stories that need to be told. It made sense! I love photography and telling stories with it, along with writing, so it felt like a great fit! I wanted to make an impact by telling stories through images. I started a website about things to do in our city and hoped to get a start on that dream right where I was. But, that wasn’t truly satisfying me and I eventually let that project go.

Little did I know then but the story that needed to be told would be my own daughter’s. 

Not long after the conference, his wife, Jenny, wrote about being a mom and that post resonated with me in powerful ways.

I refuse to believe that being a mom
isn’t a “big enough dream.”

– Jenny Acuff

Motherhood is a role that uses all of my strengths and talents perfectly! I began to realize that becoming a mother wouldn’t be wasting or throwing away my passions and talents – it would be the best possible use of them.

The next month we found out we were expecting, and Tori was born the following July! I was so happy in my new role, so content.

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And then, Krabbe. Finding out that our six-month old daughter was dying and that we shouldn’t have more children was devastating on so many levels. And then when she went to Heaven, I was left wondering “what now?” What was I supposed to do?

Despite the potentially isolating situation in which we found ourselves, we never felt alone, and that was largely due to the community Jon created. Between notes, gifts, and visits from so many – including the large number at her Celebration of Life from several states! – we felt so loved and supported from so many “online friends.”

After she went to Heaven, Jon’s book Do Over was released and it came at the perfect time – since I was no longer technically a “mom” in terms of employment, what was I supposed to do? I revisited my dream of telling stories and (after being encouraged by an editor) I decided to start writing a book about our journey with Tori. Amazingly enough, even that project has roots in the Start Conference because I had attended the Writer’s Workshop, even though I had no intention of becoming an author at that point. I wrote and edited for about a year before finding a publisher (one mentioned at the conference, as well).

And finally, his book, Finish, was released, which helped me see the benefit of pursuing what I had started and finishing it. And I did. My book, Even So, Joy was published in January 2018. Tori’s story was told, and I can’t imagine anything greater. My initial dream was fulfilled in a way I never could have predicted, and I hope that I can continue to fulfill it in different ways throughout my life.

Best of all, I became a mother again in April, therefore bringing me back to my ultimate dream and purpose. ❤

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I am so thankful for how God has used all of this to shape me and to guide me through the past five years. And I’m thankful for Jon Acuff and how he has used his life experiences to mentor others so generously. It’s been an incredible journey!