Reminders of Krabbe and Choosing to Be Joyful

There will always be reminders of Krabbe and its effects on Tori in the least expected places.

The other night, for instance, on The Good Doctor, they had a patient who was unable to smile because her cranial nerves were not working properly.

Just like Krabbe.

This is just one example, of course. These situations always catch us by surprise, and it’s hard to believe that even just four years ago something like this wouldn’t have phased us. We would have enjoyed the episode of the show but it wouldn’t have made us think about anything else.

When times like this happen, we have a choice: focus on what Krabbe stole from her – and us – with sadness, or focus on all that Heaven restored to her with joy.

And, as always, we choose joy.

Her smile was amazing, even though we only saw it for five months. I think we will appreciate her brothers’ smiles far more because of this. Each smile, each expression…such joy.

We remember her smile with such love and eagerly await seeing it again soon – but not yet ❤️

Completely Different

I haven’t changed my phone wallpaper in almost two years.

My dad captured this moment only a couple of days before Tori went to Heaven and it’s the last non-selfie photo I have of me and her together. I have had no desire to change it because it’s comforting to me. I like that it’s always there, easy to find, and that it represents the deep trust she had in me.

I like that it’s the same photo day after day.

This pregnancy has been both similar and different to my pregnancy with Tori. In many ways, though it was still relatively easy, hers was more complicated.

Both pregnancies were/are easy in regards to no morning sickness, little discomfort, no swelling, etc. I do not take it for granted that my body seems to like pregnancy!

But there are some major differences:

  • I had gestational diabetes.
  • I had excess amniotic fluid (because of the GD).
  • I gained over 30 pounds.
  • My hips caused me pain constantly.
  • She would sleep through non-stress tests, triggering multiple ultrasounds each week.
  • I tried to deliver her naturally and ended up having an unplanned c-section.

When we found out that we were having identical twins (mono/di), we immediately assumed that we were in for a rough ride.

And, thus far, we’ve been completely wrong.

  • I passed my glucose test!
  • My fluid levels are normal.
  • I have only gained 20 pounds.
  • My hips only hurt while trying to sleep.
  • We will see about the non-stress tests, which start at 32 weeks 😉
  • Even though I have ultrasounds every other week, everything is going as smoothly as possible! No complications; good, steady growth; very active; healthy boys.
  • This c-section is scheduled, and I am happy about it this time!

I had prayed that God would let us have the easy road this time, and while we’re not in the clear until they are born, so far He has blessed us with a normal pregnancy, and we are beyond grateful. I needed this.

(25 weeks and 29 weeks)

We’ve begun to realize that everything about what’s going to happen in April is completely different than with Tori.

  • Boys, not a girl
  • Two, not one
  • No Krabbe, no genetic issues

And we need these differences, too.

Because it will be completely different, there will be less temptation to compare them to Tori. She has her place in our hearts and they will have theirs. ❤️

We have no reason to fear the future with the twins and yet we are going to be waiting…for the NBS results, for the 5/6 month mark (when Tori’s symptoms surfaced), for them to surpass her life of 19 months and 27 days. I think until we hit that mark we will wonder if the genetic testing was wrong, if the Newborn Screening was wrong, if things are going to be the same as they were with Tori.

The boys are going to learn to crawl, talk, walk, run, play…things we can’t even imagine because Tori was robbed of those opportunities. I can’t wait (and yet I can) until they are mobile and able to get away from us – something Tori never could.

Usually the status quo brings comfort; in this case, the differences are refreshing. And we need them.

I wonder what I will do and how I will feel when the boys are here in regards to my phone wallpaper. I imagine that will be an emotional moment, even if the new photo incorporates Tori in some way, because it will be a reminder that she is in Heaven and not here with her brothers.

But, as we move forward in our new adventure, we know that things are going to change, that change isn’t bad; that things are going to be new and wonderful, even if bittersweet, and we will learn to embrace the change and the joy that these precious boys will bring to our lives.

And we can’t wait. ❤️

One Year…

Time is a funny thing. 

Our Tori has been a resident of Heaven for one year as of tomorrow (March 27). It’s surreal, to say the least, to think that we have lived one year without her in our arms. One year without watching her breathe, sleep, and struggle as Krabbe overtook her fragile body. One year since she was healed completely and made whole once again.

Why is it that today, the day before the one year anniversary of Tori’s Heaven-going, my heart feels so heavy? She was gone yesterday, she was gone two months ago; nothing has changed, but for some reason this milestone brings back emotion. This is a rhetorical question, of course. Time is strange in that it heals but it also reminds you of what you once had more strongly as it passes.

We’ve pondered how to spend March 27 for months now, and we came up with an idea last week to return to the Philly Zoo to feed giraffes. However, we won’t be able to do that until April 17, so tomorrow we will celebrate her Heaven-going anniversary by eating fried apples at Cracker Barrel (her favorite!) and remembering her with joy. 

We refuse to sit at home and be sad – that isn’t how we lived life with her and that will not be how we live life without her. We taught her to embrace life and choose to be joyful, and that’s what we will do tomorrow. We remember God’s faithfulness and perfect guidance the ten days before He called her home and are filled with gratitude. 

We miss our baby girl every moment of every day and we anxiously await our someday reunion in Heaven. But, for now, we will continue to live life with passion and joy, just like we did with her here. ❤

What Might Have Been

I try not to think about what might have been, cause that was then…

We can’t go back again, there’s no use giving in, and there’s no way to know what might have been.

– Little Texas

It’s so easy to let our minds run away from us and to ponder what might have been instead of what actually is. 

If we aren’t careful, we can make ourselves incredibly sad on days like today – when our Tori would have turned two – instead of celebrating instead that she is healed and with Jesus. 

We could focus on all that she might be doing as a two year old here on earth, or we can imagine her healed, whole, healthy body running around in Heaven where we will see her again (soon, but not quite yet, as Jim Kelly said yesterday).

Brennan and I have learned that you must take control of your thoughts in times like this – not that you can’t grieve, of course, but to not force yourself into sadness simply because you are wondering about what may have been. It doesn’t change anything, it doesn’t benefit you in any way, and it doesn’t bring joy. In fact, it steals joy. 

It’s a choice, just as joy is. You can choose to have a great day or a miserable day based on how you control your thoughts.

So, today, on Tori’s birthday, we are remembering the great times we had with her. We are thinking about what actually happened instead of what could have happened if she had been healthy. 

And our joy is REAL. It is genuine. It is God-given.

We take such joy in knowing that she is running around with Jesus. She breathes normally, her nerves don’t cause pain, and her body is whole. And that is the best possible gift we could receive today ❤️

Thank you, Jesus, for Your peace and joy, and thank you for making us Tori’s parents.

Hospice Butterfly Release

Today, Hospice of Central Pennsylvania held a butterfly release to honor our loved ones who have passed away. Though Brennan had to work, I went to represent our family and to release a butterfly in Tori’s honor.

It was held in a beautiful part of the Capital Area Greenbelt that has been made into a garden – the Five Senses Garden.

Each participant was handed a little white folded triangle that contained a butterfly, eager to escape and fly away. Mine was definitely ready:

We released them in unison and watched them fly away:

I looked around at those gathered and I wondered about each of their situations, hoping that they weren’t there because they, too, had lost a child, but I’m sure I wasn’t alone.

Thank you, Hospice of Central Pennsylvania, for not only caring for our loved ones while they are dying, but also for continuing to so thoughtfully care for those left behind. ❤️



Even Though…

I love when God speaks to you so clearly through circumstances. If you come across a passage of Scripture once in a day you might read it and then move on. When it appears three times, separately, in three different books/blogs, you pay attention.

Today I was finishing up “Amazed and Confused” by Heather Zempel and began reading “Praying God’s Word” by Beth Moore. In addition to those two books, I read an excellent post by my friend Judy about rejoicing in God no matter what comes our way.

All three of these resources referenced and spoke about the SAME passage of Scripture.

What was the common passage?


“Even though…”

Habakkuk 3:17-19 is not a new passage to me. It’s one I considered many times throughout our journey with Tori because it absolutely applied to our situation.

Habakkuk is stating that no matter what happens, no matter how hard things become, he would rejoice in the Lord and be joyful. 

Heather Zempel’s commentary on this book of the Bible – and on this passage, specifically – is excellent. Here are a few of my favorite quotes:

“God is still good, sovereign, and faithful, despite the circumstances we see around us, and is therefore worthy to be praised.” (pg. 153)

“We learned that faith was not about conjuring an idea in our heads and finding ways to fuel it; faith was recognizing that God always had something better in mind than what we could see in the present circumstances. We understood that perspective might not change the facts of our reality, but they certainly changed our perception of reality.” (pg. 156)

Through it all, we trusted (and continue to trust) the God who made us all, who sent His Son because He loves us lavishly, and the One who knows what the future holds.

“What’s the difference between people who face the unknown and see fear and those who see opportunity? What makes a person look at a dead-end and see open-ended possibilities? Story. The story we have been told will set the stage for what we expect in the next chapter and will inform us of the role we play.” (pg. 157)

“When Habakkuk came to a place where God’s actions collided with his expectations, he found the only hopeful response was worship that was rooted in an unshakable and undeniable awareness of God’s character, ways, and works.” (pg. 160)

“As we see God more, we are able to praise Him more. We more clearly recognize and acknowledge the hand of God at work in our lives, and the practice becomes an act of worship and a hymnal for worship in days to come.” (pg. 164)

“Habakkuk is not just comforting himself by playing with ideas; he is speaking of the things that God has actually done. The Christian faith is solidly based upon facts, not ideas. And if the facts recorded in the Bible are not true, then I have no hope or comfort. For we are not saved by ideas; but by facts, by events.” – D. Martyn Lloyd-Jones (quoted on pg. 169)

“This brand of faith knows God can…believes He will…but worships even if He doesn’t.” (pg. 177)

“We can frame the character of God according to our circumstances, or we can frame our circumstances according to what we know of the character of God. We can let our circumstances inform what we know to be true of God or we can let what we know to be true about God inform our circumstances. As Warren Wiersbe said, “God doesn’t always chance the circumstances, but He can change us to meet the circumstances. That’s what it means to live by faith.”‘ (pg. 178-9)

God continually reminded the Israelites of the importance of remembering all that He had done for them, and yet they continued to forget. When they weren’t studying His word and their history, they lost sight of God’s goodness and plan and they strayed from His will.

As we said at the beginning of our journey, God has never been unfaithful to us, so why would He be unfaithful now? Because we have reminded ourselves for years of His wonderful works since the beginning of time and of those in our own lives, trusting Him with Tori came fairly easily.

“He works things together for His purpose and not our expectations.” (pg. 184)

“Whether He delivers from, delivers through, or delivers later, we know that He is always present.” (pg. 186)

‘His faith was not rooted in what he could see but in what he could not see in the moment. He anchored into the brand of faith that the author of Hebrews described: “Faith is the assurance of things you have hoped for, the absolute conviction that there are realities you’ve never seen” (Hebrews 11:1).’ (pg. 186)

Oh yeah, and Hebrews 11:1 (quoted above) was also the verse of the day on WordFM today so I heard it many times throughout my day.

“Sovereignty means that God is in charge. Eternally in charge. We need God to redefine our suffering against the background of eternity because eternity puts things into perspective.” (pg. 188)

When things don’t go as we had planned, do we run from God or run TO God? Why is it so easy for us to discard our faith just because things get tough? Why don’t we trust His proven faithfulness to be present in our own lives?

“I refuse to let what I don’t know keep me from worshiping what I do know.”
(pg. 190)

(I know it seems like I just quoted the entire book but I promise there is so much more wisdom to be gleaned – you should read it!)

This final quote is a great summary of our perspective on Tori’s short life.

We KNOW that there is ONE true God. We know that God is sovereign, that He is good and loving and gracious. We KNOW that there is a Heaven waiting for those who believe in Jesus and that this life is only the beginning. We are certain of these things!

We DON’T know why God chose us to be Tori’s parents, why He chose her to have Krabbe, and why He didn’t choose to heal her on earth so that she could grow up under our care. We don’t know what the future holds for us in regards to having more children. We don’t know. But, as the quote above says, we aren’t going to let these few unknowns keep us from serving and praising the One who does know!

We know that He has a plan for us and that Tori is waiting for us in Heaven. Whether or not God chooses to reveal to us His thoughts on this situation here or if we will find out in Heaven, it is still well with our souls.

Our faith isn’t blind, and it isn’t a band-aid. Our faith is the frame through which we view this entire life and it’s the source of our joy and our peace, and it’s the reason why we continue to praise God and choose joy “even though” we lost our only child. 

After all, our loss doesn’t change God’s character or His purposes for us. He is STILL good.

Removing the Sting of Death, Part Three

Disclaimer: As with anything I write, I write with the understanding that we all process death and grieving differently – even as believers – and this is not a judgment or a criticism of anyone who handles these things differently. I write about my own beliefs and understanding of death given the hope that Jesus brings to us all, and I write about how this is playing out in my own life in hopes that it might encourage others in their own journeys. 

I have broken this into three posts because of the length. You can read parts one and two here.

It is often said that we tend to only believe God when it’s easy. Afterall, it’s easy to follow God when life is going well, when we have plenty, when things are comfortable.

As Job so beautifully demonstrated, God is STILL good and His word is still true even when we lose it all. 

He is still worthy of our praise and devotion even when we lose a child. 

And, true faith follows even when the way is unclear.

We need to realize that God’s Word is relevant in ALL parts of our lives, including death and other difficult times.

Do we believe the Bible or just parts of it that are convenient and easy?

What about when life is messy?

If we believe that the Bible is the holy word of God Himself, how can we disregard the promises and hope He gives even through the difficult issues?

The Bible mentions death numerous times, and those verses are typically followed by a reminder of the hope that we have because of what Jesus did on the cross. Here’s one example:

And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope
Then we will be with the Lord forever.
So encourage each other with these words.

– 1 Thess. 4:13, 17-18 (bold emphasis mine)

Paul tells us to ENCOURAGE each other about death in this passage. Death was never God’s plan for us, but Adam and Eve changed the course of history and death became inevitable. One bite of an apple (disobedience) brought death into the world.

“We are geared for perfection which is why we are always so disappointed in life.”
– Rachel Gunsauls

And yet, death is NOT the end for any of us. We are all born with eternal souls and we make the choice during this life to follow Jesus or to walk away from Him – a choice that results in an eternity in Hell.

For those who have chosen Jesus, we have no reason to fear death. Death is merely the next step toward our eternal home and we will be FREE of all of the issues this world contains. This world is NOT our home. One day we will be with Jesus Himself, forever, and that is GREAT news! That alone is reason to REJOICE always.

Romans tells us to be transformed by the renewing of our minds (Romans 12:1-2) and this happens when we embrace God’s Truth and allow it to transform us…this pertains to death as well!

Jesus told not to worry (Matthew 6:34), to not be afraid (multiple times), and to remember that He has overcome the same world from which we wish to hide (John 16:33).

We are instructed to dwell on things above not on earthly things:

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…
Put on your new nature, and be renewed as you learn
to know your Creator and become like him.

– Colossians 3:1-4, 10

The world has no hope, but we do. And how are they going to find the hope that we have if we don’t live it out?

Here’s my advice:

Trust the Lord FULLY, even when you can’t see what He’s doing.

Don’t wonder what might have been, don’t have regrets.

Live life to the fullest NOW and focus on what matters – loving God and loving others.

Then you will have greater peace when a loved one goes to Heaven before you.

I long for Heaven more than ever before now that Tori is a resident of that wonderful place, and I am enjoying learning more about her current (and our future) home.

I know that someday we will be reunited FOREVER and will never be apart. The anticipation of that day brings such excitement, even though I have no idea how long it will be until we are reunited. All I know is that it will feel as if no time has passed at all since Heaven doesn’t operate within the time we know.

Does all of this mean that I shouldn’t cry when I miss her? Of course not. Grief is natural and I will never stop missing her.

However, I do believe that having a biblical perspective on death and Heaven eases the blow of her absence, and it brings me peace that cannot be otherwise explained.

Set your minds on things above…choose joy…be grateful…trust God.

Heaven, along with the knowledge that we’ll be reunited with our loved ones (who also knew Jesus), removes the sting of death, one thorn at a time.

Praise Jesus for His grace and mercy that make any of this possible.