Tori

H.B. 730 – Time to Take Action

/ lesabrackbill / 2 Comments

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:

joyinsnow

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!

The What or The Who (Not the Band)

/ lesabrackbill / 1 Comment

Last week’s sermon hasn’t left my mind much since I heard it.

The focus was on 2 Corinthians 5:14-16, 19-20.

“Either way, Christ’s love controls us. Since we believe that Christ died for all, we also believe that we have all died to our old life. He died for everyone so that those who receive his new life will no longer live for themselves. Instead, they will live for Christ, who died and was raised for them. So we have stopped evaluating others from a human point of view. At one time we thought of Christ merely from a human point of view. How differently we know him now!

For God was in Christ, reconciling the world to himself, no longer counting people’s sins against them. And he gave us this wonderful message of reconciliation. So we are Christ’s ambassadors; God is making his appeal through us. We speak for Christ when we plead, “Come back to God!””

‭‭2 Corinthians‬ ‭5:14-16, 19-20‬ ‭NLT‬‬

This passage highlights a few important things for our life on this earth:

  • Christ’s love should control us. Not influence us, but CONTROL everything we are and do.
  • We are ultimately here to help people know Jesus and to see them as He sees them.
  • We are ambassadors entrusted with this great work!

The pastor commented that so often in this life we (are taught to) stress about the answer to the question, “what am I here for?”

We wonder if we’re accomplishing that which we are here to do, and we often allow that question to cause unnecessary anxiety and fear. “What is my purpose? What if I never find it?” We allow that to drive our choices and actions.

I know people who have left their “secular” career to do something more “spiritual” while missing the fact that God needed them exactly where they were to be a light for Him (#MissionalLiving).

Instead of focusing on what we should be doing, the pastor said that we should be focusing on this question: “For whom am I here?”

Who, not what.

Who has God placed in our sphere of influence? Our family, friends, neighbors, and coworkers are our purpose here.

Most importantly, we should never pursue the “what” at the expense of the “who” because EVERYTHING we do is just an excuse or a platform to lead others to Jesus. Everything.

We all have gifts and strengths and we have roles to play with those gifts and strengths; and we all have stories that others need to hear. God can use any job, any situation for His purposes, if we allow Him to do so.

In closing, he encouraged us to ask God to breathe mission into our current life and circumstances instead of asking Him to change them, to be content with the what and focus on the who.

This is relevant to me in a unique way:

Lately I’ve been struggling with being content with the sales of my book. Numbers. Rankings. Influence. This part of my journey has not gone as I expected.

Before it went to press, I had a modest goal in mind, one that I deemed easily – and quickly – attainable. I poured my heart into telling Tori’s story and it is the most vulnerable thing I have ever done. Her life and the lessons learned from her life matter and I just knew that I would sell thousands and thousands of copies!

As of today I have only reached 10% of that goal. Ten.

(I don’t tell you that to make you feel guilty if you haven’t bought it – though I wouldn’t mind if you did decide to buy it! 😉 There’s a point to all of this.)

Of course, I’m humbly thrilled that ANYONE has wanted to read it, and each sale means that someone new has learned about Krabbe, about Tori, and about our Heavenly Father. THAT is what matters.

But, if I am honest, I am also disappointed because I thought I would sell more given the number of people who have followed Tori from the beginning.

I’m human, after all. Pride sneaks in when we least expect to see it. I worked hard on the book and emotionally invested myself in it, so I obviously want it to “succeed” in terms of high numbers. But is that success?

I had been trying to brainstorm how to increase sales, how to market it on a greater scale (with zero dollars) in order to get the numbers up. It began to consume my thoughts (when I wasn’t caring for babies).

And then I heard that sermon last weekend and I understood what the Lord was asking of me:

Do I really trust the God of the universe to put my book in the hands of those who truly need the message? Is it about the number sold or about the soul reading it?

As one of my favorite songs says, “You’ve brought me this far, why would I question You now?” He opened the doors for it to be published, but do I trust His intentions? Yes. I just needed to be reminded, to refocus.

It’s not about numbers, it’s not about selling millions (though that would be incredible): it’s about my obedience in telling our story and allowing God to use it as He sees fit. Him, not me.

It’s so much more than just book sales. My book is just another way – not the only way – God is using my circumstances, my story, my faith, and my life to reconcile people to Him.

I have to remember this. Daily. And whenever I am tempted to be concerned with the numbers (often), I need to surrender it all to the One who is in control. And I need to pray that He will continue to use my life for His Kingdom and glory.

That’s what it’s all about.

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