My Walk With God

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. ❤

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.

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 ❤️

“Is This Your First?”

/ lesabrackbill / 7 Comments

It’s inevitable lately: when meeting new people who don’t know about Tori, they will ask if this pregnancy is my first.

Since I recently started a new job it’s happening fairly often. The first few times took me by surprise and I had to think quickly about how to answer: I could be truthful and tell them about Tori, or I could be mostly truthful since this is my first TWIN pregnancy and just say yes to avoid the uncomfortable truth.

So far, I’ve opted to just tell the truth, short and sweet, and allow the potential awkwardness (from their end) to exist.  I look at it as an opportunity to tell others about Krabbe, about Tori’s amazing life, and about the faith that has sustained us.

In each instance, I recognize that I have a choice: I can be truthful with joy or I can be truthful with pain. I can embrace the joy we have found or I can be miserable. 

I continue to embrace joy. 

The title of my upcoming book is “Even So, Joy” which I derived from two sources: the song “It Is Well With My Soul” –

And Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

and Habakkuk 3:17-19  –

Even though the fig trees have no blossoms,
    and there are no grapes on the vines;
even though the olive crop fails,
    and the fields lie empty and barren;
even though the flocks die in the fields,
    and the cattle barns are empty,
 yet I will rejoice in the Lord!
    I will be joyful in the God of my salvation!
 The Sovereign Lord is my strength!
    He makes me as surefooted as a deer,
    able to tread upon the heights.

The Bible makes it abundantly clear that things are going to be imperfect here on earth. Once sin entered the world, it was inevitable that life would be terrible at times. Things are going to go wrong, our hearts are going to hurt, and sometimes it will seem unbearable.

But, the Bible also makes it clear that it can still be well with our hearts and our souls no matter what comes our way because all of this is temporary. Imperfect life on this earth should make us desire the perfection of what’s to come in Heaven. 

For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! – 2 Cor. 4:17

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow. – James 1:2-3

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5

Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are.  Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay.  For we know that all creation has been groaning as in the pains of childbirth right up to the present time.  And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved. (If we already have something, we don’t need to hope for it. But if we look forward to something we don’t yet have, we must wait patiently and confidently.) – Romans 8:18-25 (emphasis mine)

Our God is a God who redeems. He is worthy of all our praise, even when circumstances don’t appear to be praiseworthy. He knows the full story while we only know this current chapter.

You have a choice to make daily just like me; though our circumstances may be different, I know your life isn’t going perfectly.

Joy is something to be chosen and embraced in the uncertain times, in the “even though” or “even if” moments. For it is then that our faith grows stronger and we are reminded of God’s love, and the least we can do is share it with those who need it the most.

Always be real and genuine, of course, but always be pointing others toward the hope and joy we have in Jesus. It has been said that light shines brightest in the darkness, and this has certainly been proven to be true in my life. Our decision to choose joy after losing a child stands in stark contrast to the way much of the world would react. And that’s kind of the point. We should be different as Christians in this world.

I will continue to be honest and share that the twins are actually child two and three for us, not our first. I will embrace the potential discomfort and awkwardness that the other person may feel and I will point them to the glory of the Lord and the hope and joy He brings.

Even so, it is well with my soul.

Freedom Comes From Discipline

/ lesabrackbill / 2 Comments

Freedom and discipline sound contradictory, right? We all want freedom- especially as teenagers. The idea of freedom becomes an idol even though we have not yet learned a very important fact:

“Absolute freedom is absolute nonsense! We gain freedom in anything through commitment, discipline, and fixed habit.” – Richard Foster

I’ve been re-reading “Blessed Are The Misfits” by Brant Hansen now that I have a paper copy and can underline things.

This time around, chapter fourteen made me think more than the ones before it.

At first, I defensively thought that Brant must be wrong saying that freedom is found by struggling, by discipline. It ruffled my feathers because I am not one naturally inclined to be disciplined, though part of me longs for it. Freedom comes from a lack of rules, right?

I began to think of examples of how this could be and one immediately came to mind: piano.

I am naturally musical, which is both good and bad. It’s good because I’ve been successful at any instrument I have attempted; it’s bad because I never stuck with any of them (seven and counting) long enough to be excellent (except for vocals). I would get to a certain level and get bored, so I would quit.

I learned really early in life that I didn’t have to practice (or study) very much to fool my piano teacher. She would praise me and say that she could tell I had worked hard, but I hadn’t. I was only eight years old at the time. I convinced myself that my natural ability was enough and that I could be lazy. This discovery carried over to school because I realized my natural intelligence allowed me to not work as hard as others and still get good grades. We are all inclined to laziness (read Proverbs!), and mine manifested itself through music and school.

How is this related?

Because I didn’t give my all to practicing and continuing to play piano, I am restricted to the notes on a page and am unable to improvise. I am confined by my limited ability despite my desire to play more difficult pieces.

Discipline brings freedom. As Brant said, “We find freedom by losing it (page 135).”

“Anyone who does only what comes naturally, who abandons the struggle, will wind up being less than what he or she could have been. And, like Jesus said, anyone who loses his life for His sake…will find it.”

– Brant Hansen (pg. 136)

Piano is just one of the examples in my life of how I could have found freedom had I applied discipline and embraced the struggle. If I had stuck with it and worked hard, where would I be today?

I could list so many more examples of laziness and lack of discipline in my past.

However, I want to stop the growth of that list in my future by embracing and implementing more discipline in my life and by surrendering myself and my natural tendencies to the power of discipline (and to Jesus) when necessary.

“No discipline is enjoyable while it is happening—it’s painful! But afterward there will be a peaceful harvest of right living for those who are trained in this way.”

‭‭Hebrews‬ ‭12:11‬ ‭NLT‬‬

True freedom in this life comes from surrendering your life to Jesus. It comes from living the way He told us to live, and not the way our hearts think we should go. I know it sounds like a contradiction, but it’s the truth. Jesus said so. 😉

Now it’s your turn: In which areas does this resonate for you? What can you do to make a change today?< em>(Also, you really should pick up “Blessed Are The Misfits” as soon as possible. It’s so worth the read (and re-read)).

Even So…

/ lesabrackbill / 5 Comments

The common theme of the past six months has been hurdles. Things haven’t been going as smoothly as we would like and we’ve come up against some significant challenges.

  • Buying this house came with one obstacle after another and cost more than we anticipated not only to buy it, but to do the necessary renovations (that still aren’t done because we ran out of money). It seems like all of our Dave Ramsey progress was lost and we’re having to start over again in our process to becoming debt-free.
  • We drained our savings (and our HSA) to pay for IVF (though MUCH of the cost was donated by generous and amazing people and we are SO very grateful!), and it’s tough to rebuild it.
  • We started an AirBnB in the apartment upstairs and have LOVED running it. It has brought joy to us and to the families and single mothers we have been able to serve and bless through this venture. It has also been hugely beneficial financially. 

    However, two of our neighbors are “uncomfortable” with the idea for ridiculous reasons (they don’t understand AirBnB at all, essentially) and they filed complaints with the township. We were forced to make a decision to either pay $450 and wait three months (and go to two zoning board hearings) to try to be rezoned for this type of use (no guarantee of approval), or give up and just get a tenant (less income, loss of the opportunity to help others enjoy Hershey and run an AirBnB; loss of space to host family and friends and bands (through RYFO.org) upstairs).

    Ultimately, we’ve decided to try to find a tenant because some battles aren’t worth fighting. The township needs to modify their rules about AirBnB instead of trying to make it fit into other molds and making it impossible for residents to do. I am proud of my letter to the township supervisors and hope that it will make a difference in the future for property owners to use their property as they choose.

  • I haven’t had much time to finish my book proposal or to find an agent, even though my manuscript has been complete (and edited) for six months. I’m struggling to remain positive about it being published, even though I believe that the Lord led me to write it for that purpose.
  • I am committed to do many good things, but finding a balance and remaining disciplined has been a challenge.

Even so, it is well with our souls.

It hasn’ t been ALL bad, but the hard things in life tend to overshadow the good; when we focus on the positive we realize that we have had some GREAT things happen:

  • We thoroughly enjoyed our trip to California, Oregon, Washington, and ALASKA in June and returned home feeling rejuvenated even though the trip was exhausting. Seeing the beauty of God’s creation and spending treasured time with family was worth every lost minute of sleep.
  • We found out that we have THREE embryos (out of the five) that are healthy! Two are not even carriers of Krabbe! The fourth embryo needs to be retested, and the fifth has chromosomal abnormalities that are not survivable. We are thankful for these 3-4 and will hopefully do the first transfer in August.
  • Thanks to my dad spending two weeks out here, we’ve nearly completed the basement projects (laundry room/bathroom drywall and paint, etc.). We’re going to be ready for hosting bands and other guests so soon! Since we’re giving up the AirBnB this space will allow us to continue to minister to bands through RYFO – an amazing network of host homes for touring musicians.
  • Brennan and I are trying to become much more disciplined than we are currently in every area of our lives. It’s a struggle but we must overcome and become self-disciplined.

Through it all, my heart has remained at peace because I trust the Lord completely and I have absolute faith that this is all happening for a reason. As the popular song states, “Let go my soul and trust in Him, the waves and wind still know His name…” He is still on the throne, He is still in charge, and, most importantly, He still LOVES us. In those moments when I feel worry start to encroach on my peace, I stop and pray and remind myself that He’s got this.

And so we press on, knowing that it will all turn out alright.