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!

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. ❤️

 

 

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.

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…

Removing the Sting of Death, Part One

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. Stay tuned for part two!


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?”

1 Corinthians 15:54-55 NLT

My grandfather, Papa Fay, passed away last June after a long battle with Alzheimer’s Disease. He was the first (and only, thus far) grandparent I had lost – something I do not take for granted. His death taught me so much and, though I didn’t recognize it at the time, it prepared me for Tori’s passing nine months later.

We watched him decline as the horrible disease overtook his faculties and we prayed for years that the Lord would take him home so that he wouldn’t suffer any longer on this earth. When he went to Heaven on June 10, 2015 he was no longer the man any of us had known and loved – he was merely a shell, a body.

His death brought us joy because we knew for certain that he had a relationship with Jesus and that He was now present with the Lord in Heaven. He could visit with people (his favorite thing to do, a joy that the disease robbed from him as time passed), he could walk, sing, dance, and express himself. He was FREE from the chains of Alzheimer’s Disease at last, and we know that we will one day be reunited with him for eternity. What hope and joy that knowledge brings!

img_8166


As we watched Tori decline and saw Krabbe taking a strong hold of her precious little body, this experience with Papa Fay brought me such comfort. She was no longer the baby we once had and her brain was gradually losing the ability to function well. If God wasn’t going to heal her here on earth, we were comforted by the knowledge that He would heal her in Heaven.

After all, God’s Word tells us this about Heaven:

He will wipe every tear from their eyes, and there will be no more death
or sorrow or crying or pain. All these things are gone forever.
– Revelation 21:4

When we – as followers of Jesus – are living with Eternity in mind, our earthly perspective on death should shift from sorrow to joy. 

How is this possible?

We all know that death is inevitable – Scripture (and life experience) make that clear.

For everything there is a season, a time for every activity under heaven.
A time to be born and a time to die. – Ecclesiastes 3:1-2a

And I know you are sending me to my death— the destination of all who live.
– Job 30:23

None of us can hold back our spirit from departing.
None of us has the power to prevent the day of our death. – Ecclesiastes 8:8

BUT, we also know that this earth isn’t our home, it isn’t where we belong.

Death is NOT the end of our existence.

We are only here for a short time, to form a relationship with God and to preach the Gospel to all so that all might be saved through Him. We are here to prepare for eternity.

None of us are guaranteed tomorrow:

Look here, you who say, “Today or tomorrow we are going to a certain town and will stay there a year. We will do business there and make a profit.”
How do you know what your life will be like tomorrow?
Your life is like the morning fog—it’s here a little while, then it’s gone.
What you ought to say is, “If the Lord wants us to, we will live and do this or that.”
– James 4:13-15

Don’t brag about tomorrow,
    since you don’t know what the day will bring.
– Proverbs 27:1

Since we aren’t going to live on this earth forever, why do we allow ourselves to become so sad when our loved ones who knew Jesus depart for Heaven?

To be continued…

Unprepared

We are taught from an early age that knowledge prepares you for what lies ahead and can usually ease the difficulty or stress of the situation. We study for exams, prepare for interviews, research to obtain knowledge. Preparation is key, we are told.

Brennan and I have realized that, though we have known the inevitable end for over a year now, we aren’t any more prepared to lose our daughter. We never will be. Not with this. In fact, I think the knowledge makes every little scare exponentially more difficult.

We have had a few “scares” with Tori in the past month, moments where she has turned blue and her oxygen saturation has dropped very low. In those moments, especially the first couple of times, I panicked as we tried to get her to breathe normally. We were afraid that this was it – that she was going to die.

And I was a wreck. We both were.

We know that one day all too soon Tori’s brain will no longer tell her lungs to breathe deeply in order to oxygenate her body. We know that one day she may not wake up in the morning. We know all of this.

But, in that moment where death appears to be lurking, that knowledge is useless.

Thankfully, she has quickly bounced back each time and we know that she is doing well – her brain is just struggling at times to multi-task. That’s what happens with Krabbe as the brain continues to deteriorate and the signals that once moved so quickly and with such strength fade slowly. We are so thankful in those moments for the pulse-oximeter that beeps loudly to alert us to any issues with her saturation, allowing us to quickly move into action.


 

Last month, as we left Tori in the induction room for her MRI, it felt so strange (as it always does) to leave her behind. To not have her with us. And I realized that each time we do this we are getting a tiny glimpse into life without Tori here.

I’m the type of person who would rather face unpleasant situations in life in order to have resolution as quickly as possible. If I know pain is inevitable, I’d rather just face it so that it is over.

But this is different. Losing Tori is entirely different.

I will linger in this unknown for as long as I possibly can.

Because when the unknown is gone, so is she.

DSC_0014

On Hospice and Heaven

I was previously under the impression that hospice was only called in when death was imminent, that it was a service used only in a person’s last days.

So, when the idea was presented to us during Tori’s hospital stay I was understandably confused. It felt so surreal to be having that discussion because she is still doing so well.

It was then explained to us that a person can be on hospice for years and that it is merely another resource to make our lives easier. 

Make things easier? Yes, please.

Today two hospice nurses came over to take care of the “intake” process and to discuss the services they can provide. 

For now, they will simply provide services like medication delivery, nursing visits as needed (including emergency ones before going to the ER in order to keep us home), and anything we need in the meantime.

They will also help us with making end of life decisions as needed.

End of life. It’s still so strange to think that we are discussing Tori in these terms.

We’ve heard from others that Hospice was a great blessing during a rough time, so we are glad to have this resource at our disposal.

____________________________

All of this talk of death has made us, once again, so thankful for the hope of Heaven that we have as followers of Jesus.

This world is not our home!

Scripture tells us that we will be made whole, that we will have no more pain or tears, that our bodies will be whole and restored and made new.

We will be living with Jesus and the angels He created (though we do not become angels ourselves) and be reunited with our loved ones who also believed that Jesus is the Son of God. What a family reunion awaits us!

There will be no more death, no more war, no sickness, no conflict. No hunger or thirst. Nothing bad at all.

No more Krabbe.

What will there be?

Love.

Joy.

Peace.

Patience.

Kindness.

Faithfulness.

Gentleness.

Goodness.

Perfection.

Can you imagine? 

The hurt and devastation around the world is overwhelming and only adds to my heartbreak, so I try to avoid news most days.

However, the more I read the news the greater my longing for Heaven. I long for the peaceful, perfect place the Bible describes far more now than ever before and I can’t wait to walk with Jesus someday. 

Do I want Tori to go to Heaven before us? Of course not. We want to keep her with us for the rest of our lives, and we still pray for a miraculous healing. 

And yet, if that is God’s Will, we know she will be in good hands until we meet her there someday. ❤️