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.

Book Review: Dear Grandchild, This Is Me

On my mom’s side of the family we’ve been so blessed by what we know as “Grandparent Books” – labors of love created about my great-grandparents, grandparents, great-aunts and uncles, telling their stories. These binders are filled with photos, stories (from interviews if possible), copies of awards and achievements, etc. They are amazing and true keepsakes.

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However, not every family has someone willing to go to all that “trouble.” Maybe that describes your family. If that’s the case, Dear Grandchild, This Is Me may be the PERFECT solution. This compact book is FILLED with prompts, questions, places for photos, a family tree, and SO much more that I honestly wouldn’t have thought to ask my parents. And, it will be in the grandparent’s handwriting!

Every page is colorful, thoughtfully laid out, and filled with great content. It’s so much easier to start with a prompt than with a blank page, and they have great questions to answer!

Family history is SO important to document, especially the personal side of it. Stories and wisdom need to be shared from generation to generation, and Dear Grandchild, This Is Me is truly a perfect way to do it. Our children’s grandparents just may be receiving a copy of this in the near future 😉 And, honestly, I want to start filling mine out for my future grandchildren (even though that’s at least 18-20 years from now).

You can buy a copy at most online retailers – here’s the Amazon link.

I took pictures of a few of my favorite pages so you can get a glimpse.

I received a free copy of this book from the publisher in exchange for my honest review. All thoughts and opinions are my own. 

 

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.

How We Make Small Spaces Work With Toddlers

img_8335You may remember that our home is currently split into two separate apartments. We currently occupy the first floor and the basement; while someday we hope to make it back into one house and utilize all of the space for our family, for now we make it work and I think we do it fairly well.

It takes creativity to have four people live in approximately 700 sq. ft. (plus the basement), and it takes some time to figure out the best way to arrange things. We’ve been here 2.5 years and I’m still always thinking of new/better furniture arrangements. 🙂 Everything must be multi-functional in order to live comfortably.

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One of the things we (by we, I mean my dad) did to make the living room (which had been split in half with a wall and a door to create a bedroom) more functional was to put in french doors. In the future, it can just be part of the living room/an office and not a bedroom, but it is currently the boys’ bedroom.

Until last weekend, the living room was also their playroom (which is fine, as we do not believe children should be confined to a separate space – this is their home, too, plus, how?).

We wanted to make better use of our available space so we took down the huge crib (where Caleb had been sleeping) and added another Pack-n-Play (with a good mattress, like Isaiah has been using).

This allowed us to move their play area into their room and make it an even better living situation for us all!

We also have a reading station and a music station in the living room, as well as other bigger toys (currently these tunnels) for them to enjoy.

They carry their toys from room to room and it’s never this clean (I quickly tidied up to be able to take a decent picture!), but that’s okay. We wanted them to feel free to have fun and to play wherever they want, safely. Toddler life is not a tidy life, and I wouldn’t have it any other way.

While it isn’t always easy to live in a small space, it is possible, and it is worth it. It’s saving us money, helping us become debt-free, and it’s forcing us to be thoughtful about using every inch wisely. And there’s less space to clean 😉

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.

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. ❤️