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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.
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 âI wish I would have known that sheâd never smile again so I could have treasured it.â But my next thought was, âHmmm…would I really want to know?â
So often we say that we would, but is it ever a good idea when itâs something we canât 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 đ
We all have to choose what defines us, and I choose to NOT be defined by child loss. â¤
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. â¤
How Jon Acuff impacted my life in ways I didnât expect
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:
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.Â
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
isnât a âbig enough dream.â– 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.
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. â¤
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
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 đ) 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. â¤ď¸
The What or The Who (Not the Band)
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.
âEither way, Christâs 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 peopleâs sins against them. And he gave us this wonderful message of reconciliation. So we are Christâs ambassadors; God is making his appeal through us. We speak for Christ when we plead, âCome back to God!ââ
ââ2 Corinthians⏠â5:14-16, 19-20⏠âNLTâŹâŹ
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! đ 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 Donât Visit Toriâs Grave
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 doesnât come from her absence – we have joy because she existed. Her death didnât 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. â¤ď¸
If you’d like to get a copy of “Even So, Joy: Our Journey through Heartbreak, Hope, and Triumph” you can do so here.
I made myself a sandwich today and I actually got to eat it…
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.
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 đ 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. đ
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.Â
