“Is This Your First?”

It’s inevitable lately: when meeting new people who don’t know about Tori, they will ask if this pregnancy is my first.

Since I recently started a new job it’s happening fairly often. The first few times took me by surprise and I had to think quickly about how to answer: I could be truthful and tell them about Tori, or I could be mostly truthful since this is my first TWIN pregnancy and just say yes to avoid the uncomfortable truth.

So far, I’ve opted to just tell the truth, short and sweet, and allow the potential awkwardness (from their end) to exist.  I look at it as an opportunity to tell others about Krabbe, about Tori’s amazing life, and about the faith that has sustained us.

In each instance, I recognize that I have a choice: I can be truthful with joy or I can be truthful with pain. I can embrace the joy we have found or I can be miserable. 

I continue to embrace joy. 


The title of my upcoming book is “Even So, Joy” which I derived from two sources: the song “It Is Well With My Soul” –

And Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

and Habakkuk 3:17-19  –

Even though the fig trees have no blossoms,
    and there are no grapes on the vines;
even though the olive crop fails,
    and the fields lie empty and barren;
even though the flocks die in the fields,
    and the cattle barns are empty,
 yet I will rejoice in the Lord!
    I will be joyful in the God of my salvation!
 The Sovereign Lord is my strength!
    He makes me as surefooted as a deer,
    able to tread upon the heights.

The Bible makes it abundantly clear that things are going to be imperfect here on earth. Once sin entered the world, it was inevitable that life would be terrible at times. Things are going to go wrong, our hearts are going to hurt, and sometimes it will seem unbearable.

But, the Bible also makes it clear that it can still be well with our hearts and our souls no matter what comes our way because all of this is temporary. Imperfect life on this earth should make us desire the perfection of what’s to come in Heaven. 

For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! – 2 Cor. 4:17

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow. – James 1:2-3

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5

Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are.  Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay.  For we know that all creation has been groaning as in the pains of childbirth right up to the present time.  And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved. (If we already have something, we don’t need to hope for it. But if we look forward to something we don’t yet have, we must wait patiently and confidently.) – Romans 8:18-25 (emphasis mine)

Our God is a God who redeems. He is worthy of all our praise, even when circumstances don’t appear to be praiseworthy. He knows the full story while we only know this current chapter.


You have a choice to make daily just like me; though our circumstances may be different, I know your life isn’t going perfectly.

Joy is something to be chosen and embraced in the uncertain times, in the “even though” or “even if” moments. For it is then that our faith grows stronger and we are reminded of God’s love, and the least we can do is share it with those who need it the most.

Always be real and genuine, of course, but always be pointing others toward the hope and joy we have in Jesus. It has been said that light shines brightest in the darkness, and this has certainly been proven to be true in my life. Our decision to choose joy after losing a child stands in stark contrast to the way much of the world would react. And that’s kind of the point. We should be different as Christians in this world.

I will continue to be honest and share that the twins are actually child two and three for us, not our first. I will embrace the potential discomfort and awkwardness that the other person may feel and I will point them to the glory of the Lord and the hope and joy He brings.

Even so, it is well with my soul.

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

Even So…

The common theme of the past six months has been hurdles. Things haven’t been going as smoothly as we would like and we’ve come up against some significant challenges.

  • Buying this house came with one obstacle after another and cost more than we anticipated not only to buy it, but to do the necessary renovations (that still aren’t done because we ran out of money). It seems like all of our Dave Ramsey progress was lost and we’re having to start over again in our process to becoming debt-free.
  • We drained our savings (and our HSA) to pay for IVF (though MUCH of the cost was donated by generous and amazing people and we are SO very grateful!), and it’s tough to rebuild it.
  • We started an AirBnB in the apartment upstairs and have LOVED running it. It has brought joy to us and to the families and single mothers we have been able to serve and bless through this venture. It has also been hugely beneficial financially. 

    However, two of our neighbors are “uncomfortable” with the idea for ridiculous reasons (they don’t understand AirBnB at all, essentially) and they filed complaints with the township. We were forced to make a decision to either pay $450 and wait three months (and go to two zoning board hearings) to try to be rezoned for this type of use (no guarantee of approval), or give up and just get a tenant (less income, loss of the opportunity to help others enjoy Hershey and run an AirBnB; loss of space to host family and friends and bands (through RYFO.org) upstairs).

    Ultimately, we’ve decided to try to find a tenant because some battles aren’t worth fighting. The township needs to modify their rules about AirBnB instead of trying to make it fit into other molds and making it impossible for residents to do. I am proud of my letter to the township supervisors and hope that it will make a difference in the future for property owners to use their property as they choose.

  • I haven’t had much time to finish my book proposal or to find an agent, even though my manuscript has been complete (and edited) for six months. I’m struggling to remain positive about it being published, even though I believe that the Lord led me to write it for that purpose.
  • I am committed to do many good things, but finding a balance and remaining disciplined has been a challenge.

Even so, it is well with our souls.

It hasn’ t been ALL bad, but the hard things in life tend to overshadow the good; when we focus on the positive we realize that we have had some GREAT things happen:

  • We thoroughly enjoyed our trip to California, Oregon, Washington, and ALASKA in June and returned home feeling rejuvenated even though the trip was exhausting. Seeing the beauty of God’s creation and spending treasured time with family was worth every lost minute of sleep.
  • We found out that we have THREE embryos (out of the five) that are healthy! Two are not even carriers of Krabbe! The fourth embryo needs to be retested, and the fifth has chromosomal abnormalities that are not survivable. We are thankful for these 3-4 and will hopefully do the first transfer in August.
  • Thanks to my dad spending two weeks out here, we’ve nearly completed the basement projects (laundry room/bathroom drywall and paint, etc.). We’re going to be ready for hosting bands and other guests so soon! Since we’re giving up the AirBnB this space will allow us to continue to minister to bands through RYFO – an amazing network of host homes for touring musicians.
  • Brennan and I are trying to become much more disciplined than we are currently in every area of our lives. It’s a struggle but we must overcome and become self-disciplined.

Through it all, my heart has remained at peace because I trust the Lord completely and I have absolute faith that this is all happening for a reason. As the popular song states, “Let go my soul and trust in Him, the waves and wind still know His name…” He is still on the throne, He is still in charge, and, most importantly, He still LOVES us. In those moments when I feel worry start to encroach on my peace, I stop and pray and remind myself that He’s got this.

And so we press on, knowing that it will all turn out alright.

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.