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. ❤

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.

More Than Just a Stove

On December 25, 1989 I was given a handmade stove from my great-grandparents. I would be turning seven the following week and loved to pretend to cook, so my wonderful great-grandparents (Irvin and Vera) used their talents and skills to lovingly craft this perfect little stove.

They even had the foresight to make the knobs teal – one of my favorite colors now.

Last week we moved the boys’ room around and created space to add things like the stove to their play area. Tonight we introduced them to it and they played with the food in it (we need dishes still but at least we have wooden food!) for about an hour.

When I see this stove (which came across the country, thanks to my parents, so that my children could enjoy it, too), I am reminded of the rich heritage from which I come.

I am so blessed to have known my great-grandparents (in particular, I knew Great-Grandma Vera very well; she lived down the street until she went to Heaven when I was 18).

I’m so grateful that they took the time to create something that I could pass down to my own children. How many can say they have something their great-great-grandparents made?

I pray that our children will cherish their family history like Brennan and I do. I pray that when they have families of their own they will remember to tell their children of the love that has been passed down for generations.

And I hope they take care of this stove so that their children can enjoy it, too.

Five

Today is Tori’s fifth birthday.

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It’s the fourth one we’ve celebrated without her in our presence, but, for some reason, this one caught me off guard and hit me harder than anticipated.

Five is a milestone. Five is an age little kids want to be (I apparently used to tell people I was five when I wasn’t). Five means kindergarten is coming. Five.

It’s hard to not imagine what she’d look like, what she’d be like.

We should be celebrating our first born’s birthday WITH her, but instead we will celebrate without her. It’s a consequence of living in a fallen world, a harsh reality of living between two gardens (Eden and Heaven), as Lysa TerKeurst has said.

It would be so easy to take the pains of this earthly existence and dwell on them, to allow them to consume us and to derail our lives. But, as Christians, we are given wise and practical advice as to how to navigate this fallen world, and in moments like these we should turn to God’s Word for that wisdom:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. And when Christ, who is your life, is revealed to the whole world, you will share in all his glory.

Colossians 3:1-4

“Think about the things of heaven, not the things of earth.” 

We could dwell on the things of earth – Tori’s absence, the unfair nature of our situation, what we lost thanks to mutated genes that caused Krabbe. But, God tells us to dwell on the things of Heaven – Tori’s eternal presence there, her healed body, her ability to live an abundant life there, the fact that we will join her someday for ETERNITY.

So that’s where we purposefully turn our eyes. Sometimes it comes easily, other times it requires faith. The root of our joy is Heaven through Jesus, so we choose to focus on what’s to come rather than on what has been.


At the Hunter’s Hope Symposium last week, one of the Krabbe -and fellow twin- mamas I greatly admire said this about her son: Jenna said that when Jackson was first diagnosed, she prayed and pleaded with God to let him live a normal life, to let him achieve milestones and do things like graduate from high school. She said she felt the Lord say that those are ordinary things; Jackson’s life would be extraordinary. 

I know the same is true for Tori. This was God’s plan of redemption all along – that she would change lives and make a huge difference in this world – a difference that will be seen in the next. He has redeemed a terrible situation and made something beautiful from it.


Whatever you’re facing today, remember that we are called to something greater and that this world is not our home. This broken, painful, earth is not our final destination. It’s temporary – and we thank God for that!

Focus on the eternal, on the things that come from God – love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5:22-23). When you set your mind on things above, it changes your perspective and you realize that joy comes more easily, no matter the circumstances.

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.

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


We love you, Tori, and we celebrate you today. We always will.

Perfectionism and Grace

I made this.

It was a labor of love for the twins’ upcoming festivities – something I saw on Pinterest and Etsy and realized even I could probably make it.

Even me.

Someone who is not naturally crafty. Someone who generally doesn’t attempt new things like this because I don’t like to fail. Because of this, I hesitate to try new things like this all too often.

Learning more about myself through the Enneagram has been so helpful. I am most definitely a 1. I denied it at first, but as I have lived with that knowledge for a while now, I see it daily. Things must be done perfectly by me if I’m going to do anything. If it doesn’t come naturally to me, I’m nervous to try it because I might not do well.

Perfectionism makes me an excellent writer and musician. But, perfectionism will not make me a better wife or mother. I’m learning to leave room for grace. For love. For learning.

Today I tried to make something new, and I love it. And I saved us money because buying these on Etsy are not cheap (and now I understand why 😂). It’s not perfect, but I’m choosing to not care. It was made out of love and I stepped out of my comfort zone to do it.

Eighty strips of fabric tied onto twine may not seem like a big deal to you, but it was a wonderful, confidence-building learning experience for me that will continue to be applied in my life.

Three Years: Tori’s Resurrection Day

It’s amazing that it has already been three years since our precious Tori entered the arms of Jesus.

Today could be a devastating, sad day. We could choose to dwell on what we “lost” that day, how our world changed, and that would be an acceptable way to spend the day given the circumstances. I mean, we did lose a child. The world would understand. But, as always, we choose to place our focus on where she is and how she is doing, as well as the fact that we will see her again someday and will never have to say goodbye.

Instead of the worldly form of grief, we choose peace.
Instead of blaming God, we choose faith.
Instead of tears, we choose joy.

We decided two years ago that we would always spend Tori’s Resurrection Day (also called Tori’s Day of Triumph) doing something fun as a family. The activities may vary from year to year, depending on the age of her siblings and their interests, but we want to always celebrate her life and her current/forever place of residence.

So, today we had breakfast at Cracker Barrel and had some fried apples (something she LOVED) together:

We went to see Tori’s tree at the Hershey Gardens for our second annual family photo in front of the tree:

We read “I Can Only Imagine: A Friendship with Jesus Now and Forever” to the boys – something we will do each year as we teach them about Tori, Heaven, and faith in Jesus.

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But most importantly, we enjoyed our time as a family:


I promise we aren’t perfect Christians, nor are we perfect people. We sought out the biblical examples of living after a loved one’s death, and we believe that this is how we are to live. The New Testament, especially, is FILLED with verses about death of fellow believers and how Christians should respond, and it’s always referenced with joy. With peace.

We trust that the God who created the universe can be trusted with every detail of our lives, even when we don’t understand the reasons. 

(If you’d like to hear me go more into depth about this and more, here’s a link to a speaking engagement I had in January. You can also read more in my book, Even So, Joy.)

One of the questions I ask in Even So, Joy is this: If we (as followers of Jesus) truly believe God and His promises, if we truly believe that Heaven is where we belong and where we will spend eternity, then why do we follow the world’s example and allow sorrow and grief to overcome us? It doesn’t have to be this way. 

Would anyone CHOOSE to lose a child? Absolutely not. And yet, we CAN choose our reaction and how we live our lives afterward. We see the example of David losing a child (albeit to very different circumstances) in 2 Samuel 12 and his response:

19 When David saw them whispering, he realized what had happened. “Is the child dead?” he asked.

“Yes,” they replied, “he is dead.”

20 Then David got up from the ground, washed himself, put on lotions,[b]and changed his clothes. He went to the Tabernacle and worshiped the Lord. After that, he returned to the palace and was served food and ate.

21 His advisers were amazed. “We don’t understand you,” they told him. “While the child was still living, you wept and refused to eat. But now that the child is dead, you have stopped your mourning and are eating again.”

22 David replied, “I fasted and wept while the child was alive, for I said, ‘Perhaps the Lord will be gracious to me and let the child live.’ 23 But why should I fast when he is dead? Can I bring him back again? I will go to him one day, but he cannot return to me.”

David got up. He worshiped the sovereign God he knew and trusted. He knew he would see his son again someday and chose to live life.

I think about it this way: If it were me that had died, I would NOT want my parents to stop living life. I would not want them to visit my grave (or, as we call it, Resurrection Site). I would want them to remember that the separation is not forever, that I am where we all, as Believers, are supposed to be. That I am finally HOME. 

Brennan and I chose then – and we choose now – to focus on Tori and how amazingly she is doing now. Tori can SMILE. Walk. Talk. Breathe. Play. Be with Jesus. How incredible is that?! Our precious baby girl was so broken here on earth; now she is healed and WHOLE. That is more than enough reason to rejoice!

Brennan and I know and believe that Heaven is real, that she is having an amazing time, and that we will join her someday. Every day is one day closer to that reunion!

You may not be in a situation like ours, but we all have our own challenges and life struggles. No matter what our circumstances, we each have a daily decision to make, a choice for how we view our journey; we have the opportunity to choose for it to be well with our souls and to focus on things above, not on earthly things (Colossians 3:2).

Every day, we each have a decision to make: where is your focus?

What Motivates You?

Today I cleaned my kitchen.

It took me several hours as I had to do tasks in short stints as the boys allowed, but it looks SO much better, and I feel better about it.

Why am I telling you this? There’s a reason. I’ve learned something recently that I think may help you, as well.

Bottom line: I don’t love housekeeping. My lack of love for it has led me to justify being lazy about it. Add in the excuse of twins, and a loving husband who will come home from work and do whatever needs to be done, and I easily justify and make excuses for not cleaning or tidying my house very often.

I don’t like cleaning, but I also don’t like when my house is messy. So I have had to really think about what motivates me, as a clean house is proving to NOT be motivation in and of itself.

We recently sat down and made priorities for our family, and one of the top three is family time. When I began to evaluate my role as an at home wife and mother with our new priorities in mind, it became clear that I need to use my family as my motivation for the tasks I don’t feel like doing.

When I allow love for my husband and children to be the motivator, I can find joy in the mundane.

My husband works HARD to provide for our family. He is gone for 8-9 hours per day, time he would rather be with his family; yet, he faithfully goes to work so that we can afford to live.

He works hard and deserves to be able to enjoy his children when he comes home instead of doing dishes.

(Note that I didn’t say he should get to just come home and lounge – if he only wanted to do that, I’d find it MUCH harder to want to do these things! But because he loves to serve his family, I want to make sure there’s little for him to do while he’s home.)

When he comes home to a clean (ish) house, he can relax and enjoy our boys. And that will bring joy to my heart as I love seeing him as a father (and it gives me a little break 😉).

As the boys become more mobile, that will be motivation for keeping the floors clean so that they have a clean space in which to crawl and play.

See what I mean?

Chores by themselves are NOT motivating to me at all. Neither is obligation. But knowing that what I am doing is serving and blessing those I love the most makes me do these tasks with joy (most of the time).

Make priorities to guide your family, and use them as your motivation. Having family priorities is truly transforming our home life and I am SO excited about how it will shape us and our future in years to come!

If your motivation for something is negative – or non-existent – try to find something good and positive that can be a motivation. Something outside of yourself.

“For you have been called to live in freedom, my brothers and sisters.
But don’t use your freedom to satisfy your sinful nature.
Instead, use your freedom to serve one another in love.”
– Galatians 5:13 (NLT)

Serving others brings such joy (and it’s biblical), so let that be your motivation for the mundane.

“Love each other with genuine affection,
and take delight in honoring each other.”
– Romans 12:10 (NLT)