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.

Removing the Sting of Death, Part Two

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 part one here.


I have been blessed with a few wise women in my life, women who love the Lord and whose words are gentle and timely. These friends are worth more than gold and I’m so grateful for their presence in my life.

Recently I had the opportunity to sit and visit with my friend Rachel. I have known Rachel since middle school and she has been a source of encouragement and comfort throughout this entire journey with Tori, always praying for us and texting/emailing me notes of encouragement just when I needed them the most.

As we sat in her beautiful backyard, surrounded by oak trees and golden waves of grass, our conversation veered toward God and His Word as it usually does. As we talked about Tori’s heaven-going, I mentioned that I try to always say it like that – heaven-going – instead of “death” or “passing away” because that’s the truth. That’s where she is.

Rachel remarked that she thinks that Christians should have an entirely different term for death/passing away than the world does because we KNOW that those who believe in Jesus as their Lord and Savior are in HEAVEN.

They aren’t just gone, they didn’t cease to exist entirely – they are in their eternal home, the one in which we as Believers will reside someday, as well. It’s not goodbye, it’s “see you soon!” This should bring us JOY!


“Don’t let your hearts be troubled. Trust in God, and trust also in me.

There is more than enough room in my Father’s home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is ready, I will come and get you, so that you will always be with me where I am. And you know the way to where I am going.”

 “No, we don’t know, Lord,” Thomas said. “We have no idea where you are going, so how can we know the way?”

Jesus told him, I am the way, the truth, and the life.
No one can come to the Father except through me.

– John 14:1-6

Jesus told us He was going to prepare a place for us and that we would one day join Him there. If we believe His Word to be true, we should believe Him in this, as well. He said we shouldn’t allow our hearts to be troubled with things of this world, but to trust Him, instead.

And yet, we allow the Enemy to instill fear and long-lasting sorrow within us when our loved ones become residents there…

Do we miss their presence in our earthly lives? Of course – they impacted us, we loved them, and now they aren’t physically present. That’s the sting of death that Paul mentions in 1 Corinthians 15:54-55.

However, they aren’t really gone – they are in the presence of our resurrected Savior and are made whole again! We must remind ourselves of this instead of being overtaken by sorrow and grief.


Knowledge is power, we are taught from birth; wisdom is applying the knowledge we possess to our lives. The knowledge that our loved ones who knew Jesus are in Heaven is powerful and can aid in turning our mourning into dancing.

The way that we combat the work of the enemy in any area of our lives is by applying and speaking Truth into the situation. Occasionally, the enemy attempts to make me feel regret and guilt in regards to Tori’s short life. In those moments, I halt those attempts by speaking truth: we lived life with Tori to the fullest and we cared for her in the best possible way. We have NO reason to have regrets or guilt!

Truth brings FREEDOM.

The enemy tries to make us feel afraid, overcome with sorrow, and filled with guilt and regret. He wants us to feel like failures, like we are unworthy of God’s love and grace. When we remind ourselves of God’s Truth and His promises, we can overcome these things!

Speak truth in the middle of your fear and sorrow. Remind yourself that God is good, He is faithful, He is sovereign. He loves you and IS love. He is still God even when you can’t see His hand working.

One of the truths I remember daily is that Tori is no longer confined in a broken body that couldn’t function properly – as her mother, knowing that she is free makes me so happy! She has beaten Krabbe and has overcome it! The course of Krabbe in her life was inevitable, so the hope and joy of Heaven is indescribable.


It is the same way with the resurrection of the dead. Our earthly bodies are planted in the ground when we die, but they will be raised to live forever. Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. They are buried as natural human bodies, but they will be raised as spiritual bodies…

…What I am saying, dear brothers and sisters, is that our physical bodies cannot inherit the Kingdom of God. These dying bodies cannot inherit what will last forever. But let me reveal to you a wonderful secret. We will not all die, but we will all be transformed! It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed. For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies.

Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: “Death is swallowed up in victory. O death, where is your victory? O death, where is your sting? ” For sin is the sting that results in death, and the law gives sin its power. But thank God! He gives us victory over sin and death through our Lord Jesus Christ.

So, my dear brothers and sisters, be strong and immovable.
Always work enthusiastically for the Lord,
for you know that nothing you do for the Lord is ever useless.”

‭‭1 Corinthians‬ ‭15:42-58‬ ‭NLT‬‬
(bold emphasis mine)

To be continued in part three…

The Joy of the Known

I realized recently that part of our inner joy and peace comes from the knowledge that we don’t have to wonder anymore when she will be taken from us. We don’t have to live each day wondering if it will be her last.

  
In retrospect, we can see that Tori’s brain was struggling for about six weeks before she went to Heaven. Though we rarely spoke of this, she had been having “blue episodes” every few days and the first few scared us so much. We were so panicked when they happened, as we watched her oxygen saturation drop as low as 10% at times.

She always jumped right back up to the high nineties, and she was alert and responsive even during these episodes, so we weren’t concerned about losing her soon.

Dr. Escolar was aware of these and acknowledged that Tori was in stage 4, but she wanted our next appointment to be in six months. She wasn’t concerned about losing her soon.

Yet, every time one of these episodes happened, our hearts filled with fear and dread as we wondered if this was it. Would she leave us now? Tomorrow? Months from now? We had no idea.

The unknown took its toll on our hearts and minds, even as we tried desperately to trust the Lord and His plan in those moments. 

We shed many tears during those episodes because they reminded us of her fragility.

One month before she passed away, we had blogged this post about feeling unprepared to lose her. We couldn’t even begin to imagine how we would handle losing her.

Now, we are amazed at how well God actually did prepare us without us even realizing that He was doing it. This knowledge – along with the knowledge that she is whole and healed and with Jesus – has brought us abundant joy and peace.

One of my favorite lines that I have written (it feels strange to say that!) is this: 

The joy doesn’t replace the heartache; rather, they tensely coexist each day, fighting for our undivided attention.

This is true today, as well. 

But, joy wins. Peace wins. God wins.

We will always love our girl, and we will never be the same. But, how can we not praise the One who made her, who so perfectly orchestrated her entire life and even her death? 

As He said to Job thousands of years ago, who are we to question Him? Who are we to challenge the One who knows everything and created it all? 

Just as He knows each star by name and each hair on our heads, so He also knows exactly why all of this happened and how it will unfold. We take joy in knowing that this same God loves us and will never leave us. 

Krabbe needs to be known. Every baby deserves to be tested for this wretched disease at birth so that they have a chance at life. Ignorance is NOT bliss when it comes to leukodystrophies, and we will continue to educate people so that no one else has to go through what we have gone through.

Our hearts ache to hold our beautiful daughter once more, but in the meantime, we will continue to advocate and fight in her honor to eradicate this disease from the face of the earth. It’s the least we can do.

Tori’s Bucket List: Wear Mama’s Wedding Dress

Some of the items we have added to Tori’s Bucket List were inspired by the lists of her Krabbe buddies.

This one was first done by Anniston, and when I saw the photos I messaged her mom and asked if she would mind if we copied the idea. She was so excited that we wanted to do it!

This idea made me so happy because Krabbe has robbed Tori of the option to wear my dress on her wedding day. Krabbe has stolen so many precious moments like these away and I wanted to take this one back in our own way.


To make this even more fun, I didn’t tell Brennan. I wanted this to be a surprise for him and I hoped that seeing his baby girl in my dress would be incredibly meaningful and special to him.

I asked his cousin, Sarah, what she thought of the idea and she was so excited! She even contacted a florist to make the floral crown for the photos! I love that the florist used daisies without even knowing that the daisy is my favorite flower ❤️

Special thanks to Sarah B Photography for the fabulous photos, Foster Flowers for the floral crowns, and Michelle Morrison for helping with everything.

Brennan’s reaction was priceless and more emotional than I had imagined.❤️

Here are just a few of the beautiful images Sarah captured today:

 

Sensitivity and Personal Responsibility 

Someone recently asked me a question that I thought was worthy of an entire blog post because it is something that needs to be addressed in our culture.

I was asked how it makes me feel – given our circumstances with Tori – when friends post about their healthy, typically-developing children.

I paused before answering, but it wasn’t a new concept to me. It is something I have thought about almost daily since Krabbe began to appear in Tori. I just wanted to make sure I was clear in my response.

I pray that you will read this with an open heart and mind and not immediately be offended.

I am human, and there are days when I feel more sensitive about it than others. 

There are days when it can be challenging to see posts from friends who don’t have to face the things we do, friends who don’t have to consider their genetics when making decisions about expanding their families, friends whose children aren’t dying.

I think if I didn’t feel a little sensitive to this it would indicate a deeper issue within myself – after all, what special needs parent wouldn’t see a healthy, typically developing child and not want that for their own child?

If I am honest,  it is even difficult some days when I see photos and posts of other Krabbe children who can still do things that Tori can no longer do. 

All of these things are reminders that I am losing my child and there is nothing I can do about it.

However, if these people are truly my friends, why wouldn’t I celebrate with them? 

Why wouldn’t I be genuinely happy that their children are happy and healthy, that they have such a bright future and are learning new skills daily?

If Tori were still able to do those things, if Tori were still healthy and growing, I would hope that they could celebrate with us.

Our culture has become far too hypersensitive and it has reached a ridiculous point. It has to stop. It is a choice to be offended.

Why can’t we celebrate others’ successes even if we aren’t currently experiencing the same success?

Whatever happened to personal responsibility for our own emotions, actions, and everything else?

I cannot stand how easily offended people have become and how they expect the “offender” to take sometimes drastic measures to ensure that they don’t “offend” ever again. (This isn’t my first post about this topic – see another here.)

I would NEVER put the burden on others to make them feel bad about the fact that their kids are healthy and typically developing. That is selfish and cruel, and I believe it is also sinful.

On those days when I am grieving, I choose to take responsibility for my sensitivity. I may need to ignore Facebook posts occasionally or hide the friend from my News Feed for a while, or even stay off of social media for a while, but my friends don’t need to know that.

It is MY responsibility to deal with my own emotions and not steal another’s joy with my selfishness and jealousy. 

What good does it do to make others feel badly that they have what I so desperately want?

If I want people to put themselves in my shoes, I need to do the same for them. And that includes being able to celebrate with them when things are going well and take personal responsibility for my own emotions on the tough days.

______________________________

To our friends who are parents – we are genuinely  thrilled for you and your growing families. We are so thankful that  you don’t have to endure the trials that Brennan and I are enduring! 

I may not comment on every post or photo, but I do share your joy most days, in my own quiet way. ❤️ 

Please take joy in your precious children! Don’t let anyone steal that joy from you.

Thank you for your love and support of our family throughout the past year – it means more than you know.

How 2015 Turned Out Differently 

For the past few years, I, along with many others, have chosen a word or two to focus on for the year for personal growth.

I had completely forgotten about these words until I found this note on my phone recently. 

Even though things haven’t gone as hoped, I found it interesting that these words still remained in my focus. I simply lived them out differently. 

The words I had been considering for 2015 (and how I thought I would live them out) were: 
* Simplify – declutter, purge, organize our house.

* Renew – love for God and Bible, marriage.

* Refine – house organization and processes.

* Intentional – focus on what really matters.

What actually happened?

* Simplify – We were forced (in a way) to cut out activities and commitments and only keep the most important things. Our pace of life is much slower. With the addition of medical equipment and supplies into our home it has also forced us to begin to purge our belongings and simplify in that way, as well.

* Renew – God has shown Himself to us in so many powerful ways this year, thereby renewing and strengthening my faith. Our marriage has been strengthened and renewed as we have made this journey together with Tori.

* Refine – We have had to make things so much simpler around the house and be more organized due to the added equipment, supplies, and routines for Tori. We are constantly trying to improve our organization as well as purging our belongings in order to function as well as possible.

* Intentional – Tori’s diagnosis radically shifted our focus and we have lived this one out much differently than anticipated. Her bucket list has been very intentional and has helped us focus on joy, life, and love.

I don’t yet have a word (or words) for 2016, but I think these four will continue to be a focus for me. 

2015 has been a year of joy amidst the deepest sorrow, and we have no idea what 2016 will hold. 

What we do know is that we will continue to love Tori and each other wholeheartedly, no matter what comes, and we will continue to choose joy in the Lord as we walk this path He has set before us. ❤️