Blessings

More Than Just a Stove

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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

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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

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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. ❤️

Three Years: Tori’s Resurrection Day

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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?

The Joy of Not Knowing

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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. 

Choose to See Beauty

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I love fall, so when I heard we were going to get several inches of snow in mid-November I was incredibly disappointed.

The last time this happened, it knocked all of the colorful leaves off of the trees prematurely, and our fall was cut short. It’s already such a short season so to have it made even shorter was frustrating.

We have a glorious red tree in our backyard and I was not thrilled that the leaves would now be covered with snow.

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However, this morning I noticed that the melting snow actually made our tree and its leaves even more vibrant. The cold, white undesirable, snowy background highlights the beauty of the red leaves more than the lush, green grass does.

Do you see where I’m going with this? The analogy was too perfect to pass up.

I’m obviously not just talking about leaves.

This is a perfect example of how there is beauty in the broken.

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In life, when bad things happen or things do not go the way we think they should, we can choose to see it two ways: we can focus on the bad, ignoring the beauty around, or we can notice how the good shines even greater in the midst of the bad.

We would not appreciate the good if everything were always perfect – we wouldn’t realize that life could go any differently! But, when less than perfect conditions arise, it gives us an opportunity to truly appreciate life and the joy that it brings.

Our family will never feel whole because we will always be missing one. Tori is living an abundant, full life without us right now and we will join her someday. But, what we endured has made us find so much MORE joy in the life we have now. The twins may be challenging at times, but they are such a blessing and a joy, and we appreciate them so much more because their sister existed and was taken away from us (#KrabbeSucks).

Believe me, I am not happy about the snow (and I am not happy that Tori had to go to Heaven so soon). But, I choose to allow it to help me see the beauty in the life that I do have, instead of focusing on what the snow has taken away.

I’m sure you’ve seen this meme before:

joyinsnow

It’s so true. So, this winter, as much as I am dreading the cold and the snow, I will remember this as often as possible. I will choose to (somehow) find joy in the snow. ❤

Twenty-Three Weeks

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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. ❤