Pregnancy & Parenting After Loss

Isaiah and Caleb’s Adventure List

/ lesabrackbill / 5 Comments

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. ❤️

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. 

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. ❤

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

/ lesabrackbill / 1 Comment

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!

Expectations and Grace

/ lesabrackbill / 6 Comments

I had one of those “I feel like I’m failing” moments yesterday when both babies were fussy (most of the day) and I couldn’t figure out what they needed.

All parents have these moments where we feel like we have no idea what we’re doing. It’s a normal part of this journey.

While I try to not fall into the comparison trap, it happens, especially in those areas in which I am the least confident. It’s SO easy to see another mom with her children (whether online or in person) and compare your performance to hers, making yourself feel disappointed and like a failure. When it comes to social media, it’s likely more “performance” than reality, anyway!

When I finally got them to nap, I had a chance to think. How many of these self-imposed expectations are actually relevant to the care of my babies and how many of them are merely an effort to measure up to my perception of what the perfect mother looks like?

And I realized something important: my babies don’t think that I’m a failure, that I don’t know what I am doing most days.

To them, my presence is enough. I walk into a room and (most of the time) they smile wide. They are thrilled just to be in my arms. So why do I compare myself to unfair, self-imposed ideals and expectations?

They don’t compare like we do because they have NO idea what other moms do. I am the only mother they know! If I were actually failing, they would have absolutely no idea. Therefore, there is no way for them to be disappointed (until much later 😉) in me.

Isn’t that freeing?

My babies delight in me. They love me. And their opinion (meaning what brings them joy, security, and comfort) should be the only one that matters (God and my husband aside) when it comes to parenting them as infants.

THANKFULLY they don’t have social media to show them what other moms are doing with their infants, and I need to remember that. And maybe I need to reduce my social media consumption on days when I’m feeling like that.

This realization is the first of many reminders throughout my life to show grace to myself during these (sometimes difficult) days of infancy with twins. And toddlerhood. And childhood.

After all, their joy is what matters right now, not my comparison to what I think others are doing. ❤️

I made myself a sandwich today and I actually got to eat it…

/ lesabrackbill / 2 Comments

Probably the strangest blog post title I’ve ever had, but it’s worth celebrating. It may seem laughable to most, but for a mom of 11 week old twins this is a huge victory.

Life with twins is so joyful, but it is also the hardest thing (caring for Tori aside) I’ve ever done.

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Photo Credit: Erin Fortney Photography

To name a few things:

I’ve had to adjust every aspect of my life, including showering. I’ve always been a morning shower person, so showering in the evening when Brennan is home has been an unwelcome necessity, but the few times I have tried to shower during the day didn’t work out so well and one or both babies ended up crying. So I made an adjustment.

I am trying my best to eat well and eat consistently, but sometimes hours fly by while I’m occupied with the boys and I forget. So the fact that I was able to make a sandwich today and eat it is HUGE. I hope it’s a trend that continues. Breastfeeding twins is an adventure and requires so many calories (and so much water), so I need to be better about making sure I eat during the day.

Of course I’m tired – any mom of newborns is. But this twin thing is a whole new level. Until they sleep for long stretches (maybe soon, per the all knowing Google?), this is going to be my reality. Thankfully, I get to sleep most Friday and Saturday nights thanks to Brennan and the frozen breastmilk we have; that sleep gets me through Wednesday of each week, but by then I am longing for Friday evening to come because the exhaustion has returned.

The boys have chosen 3:30-5pm (ish) every day for their “witching hour” (their fussy time) so that makes me SO ready for Brennan to walk in that door to rescue me 😉 He has never felt so wanted, I’m sure! Haha. It’s so hard to comfort TWO babies who both have no idea what they actually require to calm down. 😉

I rarely leave the house and have yet to attempt to leave with both of them by myself. Someday it will happen, but for now we lay low and take it easy.

Each day is filled with opportunities for “mom guilt” because one baby is more needy than the other at the moment. So, I end up holding him more, all the while feeling badly that I am not giving equal time to the other. During those “double melt-down” times it’s a constant assessment of which baby needs me more, and which one I can calm down the quickest.

It will never be easy – it’s just reality of having twins: double the meltdowns, double the sleep exhaustion; but, it also means double the smiles, laughter, and joy.

It has been amazing to observe their personalities emerging, and to see how similar they are to their behavior in the womb. Isaiah is calmer, easier to settle down, and just overall more chill than his brother. Caleb is more vocal (both in quantity and in volume), more curious, more wiggly.

It has also been amazing to watch them grow and change, because with each day they resemble Tori more and more. That’s something for which I had prayed (and will blog about the “why” soon) and I love seeing her in them.

Both are so “nosy” now and are wanting to lift their heads to look at everything. They are strong and hold their heads up really well! We’re so proud of them and their desire to work at these things.

They both love the changing table now – as did Tori – and are SO talkative, happy, and smiley while we change them. We tend to linger there, interacting with them during these joy-filled moments.

Their smiles emerged around eight weeks and made this mama’s heart so full. Tori lost the ability to smile at five months due to Krabbe, so these smiles are worth more than I can express. I will NEVER take them for granted because I know what it’s like to not have them. ❤ I know what it’s like to have a child who cannot express any emotion, so I’ll take the fussiness and anger if it means I can have the smiles.

I am so thankful to be a twin mom, but I want to continue to be real about the challenges. I tend to only post the happy photos on Instagram and not the photos of the hard moments, but know that they exist.

And it’s okay. It’s all worth it. 

Our Birth Experience in Photos

/ lesabrackbill / 3 Comments

In the exhaustion that accompanies newborn twins, I completely forgot to share our birth photos! We were so blessed to have Erin Fortney Photography present so that I didn’t miss a thing and she exceeded our expectations. Far exceeded.

If you live in Central Pennsylvania and are pregnant, please consider hiring a birth photographer – specifically Erin! – because these are moments you will treasure for a lifetime.

When you have a c-section you are surrounded by blue sheets and it feels like you aren’t able to experience the birth of your children fully. I felt like I missed the first hour of Tori’s life and we only have five or so pictures of what happened while I was on the operating table. Because of this, I didn’t want to miss any of the twins’ first moments, and Erin made that happen!

Here are some of our favorites – it was hard to choose but I couldn’t upload them ALL. 😊❤️ We are so thankful for Erin and cannot recommend her highly enough. And I promise I wasn’t asked to do this or paid for my opinions 😉 People like her are rare these days and I am so thankful that Tori brought us together. ❤