I’m Not Sad That My Boys Aren’t Little Anymore

I often see moms post about how sad they are that their babies are not newborns and tiny anymore, or sad that another year has gone by, and perhaps I could have related to that feeling a few years ago.

But, I just can’t relate to it now. I realize that my perspective is different than most, which is why I feel like I need to share it, especially this month.

I’m not sad that our boys are bigger, or that they are continually learning and doing new things. I doubt that I will ever look back with tears and want to go back to those newborn days.

I’m thrilled and delighted that they are ABLE to get bigger. That they are ABLE to grow and learn. Why am I delighted?

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Because Tori wasn’t given that opportunity. Because Krabbe robbed her, and us, of a normal childhood. She stayed little, like a newborn, for her entire existence. She never learned to talk, walk, laugh, play. 

We would do anything, anything, to have her here today, in full five-year-old glory. 

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And it is with that perspective and passion that I write, parent, and live.

I am truly overwhelmed with gratitude, amazement, and joy with every new milestone reached, and I don’t look back at their newborn pictures with sadness (disbelief that they were ever that small, amazement at how far they’ve come, but not sadness). Part of that is because newborn twins are seriously challenging and I don’t want to go back to that phase, but it’s mostly because of Tori, our precious baby girl who was taken from us too soon. I LOVE watching them learn and grow as healthy little men.



What makes me sad is that there are babies born each year with a treatable condition but that their ZIP code determines whether they have a chance to live or not.

What makes me sad is that families like ours, families with so much love for their children, have to say “see you later” to their child and be separated from them until we get to Heaven.

I fight for Newborn Screening for Krabbe because I don’t want anyone else to go through what we’ve experienced. I want babies born with Krabbe to have the same opportunity for life as any healthy baby. I want their parents to be able to see their children achieve typical milestones. I want their children to grow up.



I know motherhood is challenging and it’s easy to be frustrated. I get it. I have my moments like anyone else. However, in those moments I remember that not every child gets to grow up, like my Tori, and I remind myself that I have so much for which to be thankful.

I pray that you can do the same. ❤

Newborn Screening Awareness Month

(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)

September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).

Here’s a brief introduction:

Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.

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Photo of Isaiah’s NBS

Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.

Did you know that each state screens for a different number of diseases?

I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from babysfirsttest.org on August 31, 2019. 

State Name Number of Diseases Screened
Alabama 46
Alaska 53
Arizona 31
Arkansas 32
California 63
Colorado 44
Connecticut 65
Delaware 52
District of Columbia 62
Florida 55
Georgia 32
Hawaii 49
Idaho 48
Illinois 64
Indiana 49
Iowa 53
Kansas 31
Kentucky 58
Louisiana 34
Maine 55
Maryland 61
Massachusetts 66
Michigan 59
Minnesota 61
Mississippi 61
Missouri 60
Montana 32
Nebraska 37
Nevada 57
New Hampshire 39
New Jersey 57
New Mexico 49
New York 60
North Carolina 37
North Dakota 52
Ohio 46
Oklahoma 54
Oregon 53
Pennsylvania 38
Rhode Island 34
South Carolina 55
South Dakota 50
Tennessee 70
Texas 55
Utah 52
Vermont 35
Virginia 33
Washington 34
West Virginia 38
Wisconsin 47
Wyoming 52

According to BabysFirstTest.org there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS. 

This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases. 

Where you live should not decide whether you live or whether you die. – U2

There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all. 

As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel. 

Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening? 

 

We Have Time

Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.

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Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.

This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret. 

With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.

Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience. 

I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.

I’m so thankful for this gift of time.

Isaiah and Caleb’s Adventure List

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

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

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

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!