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. ❤

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!

The Discipline of Gratitude 

I was taught a lesson (a discipline, really) during my senior year of high school that has had a profound impact on my daily life: the discipline of gratitude.

A wise woman in my church (named Vicki Allwardt) handpicked a few of us to mentor and disciple; our journey formally began on January 1, 2001 and ended when we all left for college, but I have never forgotten the wisdom that was conveyed.

She handed us all journals and asked us to write at least three things each day for which we were thankful.

 

 

 

 

 

 

 

She included verses on colorful paper about thankfulness at the front of the journal.

I faithfully wrote in mine that year and sporadically the next. The entries are amusing at first, giving insight into my eighteen year old mind (I was very thankful for boys 😉 ), but a gradual shift can be seen as I fine-tuned this discipline of gratitude.

Looking back, it isn’t the specific things for which I was thankful that had an impact: it’s that I was taught to recognize God’s hand in my life in such a simple, yet incredible, discipline.

Now, fifteen years later, I am a thankful person most of the time and I don’t even have to purposely try to think of things for which to be thankful. It’s part of who I am.

Gratefulness naturally flows out of my heart because I have trained my heart to be thankful in ALL circumstances.

This goes beyond optimism. This goes beyond happiness. This is a form of worship because you are continually recognizing God’s presence and His faithfulness all around you.

 


Always be full of joy in the Lord. I say it again—rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.[a]

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

— Philippians 4:4-9 NLT

This passage from Philippians contains SO much wisdom about how to live life, but I want to focus on these three things:

  • ALWAYS be joyful. We are commanded to be joy-filled (remember, joy isn’t happiness) at all times, in all circumstances (v.6).
  • Prayer – including thanking God for what He has done – will be followed by God’s peace (v. 7).
  • Focusing on things that are good, true, and pure (in other words, God’s character traits), and continuing to try each day to live as Christ did will bring peace (v.8).

Joy + gratitude + Godward focus = peace.


As I started to write this post I did some quick research and found a couple of great articles about this discipline, and you can read them here and here.

The first article mentions suffering and why we should be grateful even during those times:

Ingesting life’s difficulties and tragic events can be overwhelming. Having a heart of gratitude, therefore, is not about looking at the bright side of things. And it’s not even acknowledging that things could be worse. Our thankfulness is never to be based on a set of circumstances. It’s based on a Person…

…Practicing gratitude rests soundly in the assuredness that God will ultimately redeem every horrible situation in this life or the next. “He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away” (Revelation 21:4).

I loved this quote from the second article:

“When we discipline our hearts and our lives to see that all is grace we are filled with an overwhelming sense of gratitude for everything.” – Sam Luce

When you are grateful, you are more likely to be:

  • humble
  • joyful
  • generous with what you have been given
  • content with what you have been given
  • focused on God and His sovereignty
  • at peace

This discipline of gratitude is why Brennan and I can be so overwhelmed by God’s goodness and grace even though He allowed Tori to have Krabbe…even though He took her to Heaven at such a young age…

“…even so, it is well with my soul.”

“Your grace has overwhelmed my brokenness…”
– Hillsong

We have learned to focus on all the good He did in our lives and in the world through Tori instead of on her earthly absence.

We have learned to praise Him for the time we had with her, for the memories we made, rather than all that we won’t experience with her.

After all, what good does it do to dwell on the things we cannot change?

We are not perfect, we don’t live this out perfectly, and there is certainly nothing wrong with mourning the loss of her and the life she could have lived. We did that frequently while she was with us, mostly in unexpected moments, and I know that we will grieve her absence at times throughout our earthly lives.

But, the discipline of gratitude has brought us such peace even in the midst of a parent’s worst nightmare, because we are focused on the truth of who God is – a loving, gracious Father who loves us more than we can fathom, and who works all things for our good. He is a Redeemer, and He will redeem all of this someway, somehow. 

For now, we thank Him for all that He has done and praise Him for He is worthy to be praised.


Six years ago I had the privilege of going to São Paulo, Brazil, to observe and serve alongside missionaries there. One conversation starter they often use is this: Where did you see God this week?

It doesn’t require a super-spiritual answer. Wherever you see goodness, joy, grace, kindness, love, peace, etc. (Galatians 5:22-23) you are seeing God at work.

God IS love, and He is kind, gracious, and just, so whenever you see those things in the world, you are getting a glimpse of His character, and it gives you fresh reasons to be grateful.

We’d like to encourage you to cultivate the discipline of gratitude in your own life, in all circumstances. Look for God at work all around you and write a few things down each day. You won’t regret it.

Financial Transparency and Blessings

We have been wanting to share how we have been using the Team Tori funds for quite a while as a way of being transparent, as well as to show our stewardship with the amazing financial blessings that have been sent our way by very generous people.

Since the amount is publicly known, we wanted to use this as a way to say thank you once again. We don’t feel that we “owe” an explanation, but we want to give one as a way to show you how much your generosity has blessed us and has enabled us to take even better care of Tori than we could have on our own.

When our friend Jessica surprised us with the GoFundMe page we were still in the hospital with Tori, pre-Krabbe diagnosis. She set it up to cover both medical and living expenses that we might incur because of Tori’s situation. We had no idea what we were facing or how much it was all going to cost. To say that we were blown away by the support that came in is an understatement!

We would have been more than happy with the original goal she set of $5,000, which would have covered our deductible and out-of-pocket requirements for our insurance; but you kept giving and giving, and eventually over $19,000 was raised. That doesn’t include the cash, checks, and gift cards that were sent directly to us, either!

You may have been wondering how have we spent the money, so we want to share with you that we have done so very carefully. This probably doesn’t include everything because my memory has been affected by a lack of sleep, but it gives you an idea! We promise that none of it has been used frivolously or carelessly, and all has been for Tori’s benefit.

Because of your generosity, we…

  • Filled up our HSA (health savings account) as much as was allowed legally in order to pay medical bills;
  • Purchased a deep freezer to hold Tori’s breastmilk;
  • Purchased essential oils to aid in keeping Tori (and us) healthy, as well as to help with pain relief for her;
  • Purchased an inexpensive laptop ($300) for hospital stays and traveling so that we could update the blog and communicate properly (we discovered how difficult it was to only use our phones while we were in the hospital for five days with her in February);
  • Purchased supplies and ordered photos to create her Project Life albums so that her story is fully recorded in words and photos;
  • Reduced Brennan’s work week from five days a week to four days so that he can be home with Tori three full days a week…
  • Started making memories with Tori off of her “Bucket List“;
  • Paid for our stays at the Ronald McDonald House and other expenses to get us to and from Pittsburgh for her appointments;
  • Took Tori to California to see Lesa’s side of the family, who aren’t able to travel to see her in Pennsylvania;
  • Helped another Krabbe family pay for a piece of equipment they desperately needed and insurance was fighting with them over;
  • Traveled to the Hunter’s Hope Symposium where we received much needed encouragement and knowledge;
  • And more than I can even remember, I’m sure…

All of that listed above amounts to less than $10,000.

On top of this, you all voted diligently and we won $1,000 in free gas from Exxon! This is going to last us for a very long time and we were able to take gasoline out of our budget! Huge blessing!

As you can see, YOU have been God’s hands and feet to us, and through you He has taken care of some significant needs during this time. This has eased some of burden we carry in this journey with Tori and has allowed us to have much-needed time together as a family. Priceless.


We have been so fortunate to have amazing primary insurance that has covered EVERYTHING for us. We do not take this for granted or even expect it to continue, given the issues that so many families have shared with us.

We had kept most of the money in savings in order to pay for things we assumed that insurance wouldn’t cover, but, thus far, Brennan’s insurance has covered all of her equipment, even the $5,300 adaptive stroller!

But, once we got the stroller we realized that we had a significant problem: it wasn’t going to fit in either of our cars.

Her stroller, which provides comfort and support so that she can travel more comfortably, would not be able to leave the house/neighborhood.

We realized that a different vehicle would be required, so we started looking, knowing that we didn’t have the money saved up to pay for it (we follow Dave Ramsey and don’t believe in financing anything 🙂 ), nor could we afford a car payment right now.

So, after seeking counsel from trusted friends and family, and after prayer, we decided that this was the best possible use of the Team Tori funds that we had left. After all, what good is all of this equipment if we can’t take Tori out of the house?

We knew our budget of $14,500 was low for a minivan, but we started looking anyway. There were three used minivans on the market at local dealerships, all with low mileage and unbelievably low prices. We consulted with a friend who is a car expert and he advised us to pursue one of the three – the same one we loved!

So, we went to the dealership, test drove the one van (2011 Dodge Grand Caravan Crew) we loved the most (and Tori slept through the entire test drive because she was so comfortable in it!); they wanted more than we had for it, but Brennan did an amazing job of negotiating and talked them down to exactly what we had left in the Team Tori fund!

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We paid for the van in cash and walked away SO excited, knowing that Tori would now be SO much more comfortable in “her” van, and knowing that we didn’t have to be afraid to take her out of the house as much anymore.

Tori always used to cry in the car…she rarely cries in the van now. It is obvious that the smoother ride has made a difference for her.

We absolutely believe that the purchase of the van was a God-ordained thing! From the timing to the amazing van we found for just the amount of money that we had, to the fact that it can not only store all of Tori’s equipment with room to spare AND she is comfortable, it has been one of the greatest blessings of our lives.

The fund has been building back up thanks to so many donations toward her “Bucket List” – and that is exactly what those funds will be used for. Experiences, memories, joy. Designated funds are used as they are designated.

We are very diligent with these generous gifts that you have given to us and we do not take your generosity for granted. Every gift that we have received has left us in awe and wonder of God’s love – and your love – for Tori and for us, that even in the middle of the worst storm of our lives, He is there, calming the waves and making a way for us to focus on the important things, like loving Tori with our whole hearts.

So, THANK YOU. Thank you for supporting us, for organizing fundraisers, for designing t-shirts and bracelets and Jamberry wraps; for bringing us meals, for pumping breastmilk so that Tori has nourishment; for sending Tori cards and gifts (and giraffes), and for allowing the three of us to have so much cherished time together; thank you for spreading awareness about Krabbe and leukodystrophies, for contacting your legislators about Newborn Screening legislation.

Most importantly, thank you for continuing to pray for Tori and for us. We know that God hears our prayers, and even if He chooses to answer them in a way that we don’t like, we will still praise Him and serve Him, because we know that He is good, loving, and kind.

Thank you doesn’t seem like enough. This long post doesn’t seem like enough. Know that we are so blessed by each and every one of you who follow Tori’s story. Your encouragement and prayers get us through each day ❤