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 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?

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“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.

Transparency in Grief

Several people in our lives have expressed concern that we are suppressing our grief or being “brave” for the world instead of being mournful in the wake of losing Tori.

I don’t write this in defense or out of frustration, and I certainly owe no explanation – I write to simply provide insight into how we have been grieving in our own way in hopes that others like us might find encouragement somehow, and to ease the fears of those who are concerned.

I have observed that it is very important to not judge someone in their grief because we are all complex humans with different pasts, different psychological and emotional wellbeing, etc. We all deal with things in different ways and no one way is better. We are certainly no exception.

But we are truly doing well.

From the very beginning of our journey with Tori we have been transparent and honest. We have shared our struggles, our tears, our pain. 

So many of my blog posts have been written through tears as I prayed so desperately for her earthly healing. 

But no one except Brennan knows that.

While it has been less than three weeks since Tori went home to Heaven, it is important to remember that we have been grieving since February 13, 2015. Fourteen months.

Our grief really began on January 30, 2015 after hearing the CT scan results. Brain abnormalities. So many unknowns.

Our grief escalated on diagnosis day – February 13 – as we struggled to comprehend that our six month old baby girl was dying. Dying. 

With each regression, with each ability lost, we grieved again. And again. 

Not every week brought tears, because I’m not a naturally emotional person and never have been. But I will tell you that I cried more tears in the past fourteen months as I watched my baby girl slip further and further away than I have cried in my entire life.

And no one knows that except for Brennan and me. No one has been in our home continually to observe our grief.

We were given the “gift” of preparation for her death, something not all are given. We were able to make memories and have no regrets because we knew our time with her was short.

We thoroughly enjoyed our bucket list adventures with Tori and were so thankful for all of those opportunities because we were able to LIVE life so well with her. We found so much joy in those adventures AND in daily life. True joy. 

We chose joy in the midst of our grief. Sometimes the emotions coincided as we realized that she wouldn’t be with us much longer, but joy prevailed most days.

In retrospect, we are so thankful that we were able to complete most of those adventures before she was on oxygen, before the decline really started to happen. As exhausted as we were from all the traveling and activities, we wouldn’t change a thing.

As her care intensified sometime around mid-February and her “blue episodes” became more frequent, we grieved anew and lived each day in a constant state of being alert. Each time she went blue I felt such panic wondering if this was a dress rehearsal or if this was the final curtain call.

On Easter, as Tori was healed and no longer trapped in a broken body, most of the heavy burden of grief I had felt for so long was lifted. She wasn’t struggling any longer. She wasn’t fully reliant on our vigilance to keep her airway clear from saliva. She was healed! 

As her mother, as the one who was her full-time caretaker while Brennan worked so diligently to provide for our family, I felt – and feel – relief that my baby is now healthy. She is free from Krabbe. She can SMILE!

God’s Word is truth, and His “peace that surpasses understanding” (Philippians 4:7) has truly filled our hearts. We can’t explain it except to give God the glory.

I have yet to suppress my emotions and I will not allow myself to do that, ever. It isn’t healthy and it goes against everything I am. 

Additionally, if I am being fake, how is that going to help anyone in our shoes who might come across my blog and need encouragement?

I have no idea what the future holds, and I don’t know what our journey of grief may look like. 

But, I do know that I will continue to take each day as it comes, and I will continue to live fully in each moment, whether in joy or in grief. And I will continue to blog as transparently as ever, because truth is what changes lives and encourages hearts.

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.

Gratefulness 

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.
– Philippians 4:6-7

 Always be joyful. Never stop praying.
Be thankful in all circumstances,
for this is God’s will for you who belong to Christ Jesus.
– 1 Thessalonians 5:16-18

We have been overwhelmed by God’s faithfulness and His grace in all of the events surrounding Tori’s home-going – which are nothing short of miraculous.

It’s been stunning, really, even though we shouldn’t be surprised. He is a great God who loves His children.

I’m not sure I ever expected to describe a death as miraculous, but it truly was. God’s hand was so evidently working to make things happen the way they did!

Here’s the list of things we have noticed, and I’m sure there are even more that will become evident as time progresses:

  • We weren’t in California.
  • We bought the trip insurance for the first time ever, ensuring that we would get our money back from our cancelled flights to and from California, which made it easier to choose to stay home.
  • We weren’t in the van, driving back to Pennsylvania from California.
  • We were home. Together.
  • She came back to say goodbye and to give us peace with her second passing.
  • She went peacefully, in her sleep.
  • We didn’t have to invoke the DNR and make the choice to let her pass. God did it.
  • My parents were here and not in California.
  • We spent the week together traveling – something we all love – and were able to create new memories with her.
  • Brennan was with her constantly for nine full days before she passed.
  • We never had to adjust to home nursing, which would have been a mixed blessing.
  • I took many photos of her during her last days of life on earth because I was so excited about my new camera.
  • She never knew sickness – not even a cold.
  • She never greatly suffered.
  • She wasn’t on any pain medications like morphine or valium – only a low dose of gabapentin. She wasn’t in pain.
  • She was only hospitalized once, and that was to stabilize sodium, nothing intrusive.

 

God chose Brennan and me to be Tori’s parents. What an amazing, humbling honor. He could have given her to anyone, but He chose us. We are so thankful for that.

Tori’s story started on Easter Sunday 2009, when Brennan and I met at church. Her earthly life ended on Easter Sunday 2016. ❤


 

We have heard from a couple of people that the Holy Spirit was at work at the time she passed:

I wanted to write you a quick message as something quite unexpected happened yesterday. As I was sitting in church (before hearing the news) I was praying for Tori…and suddenly had a glimpse of her as a resurrected self. In that moment, I sat in awe of Christ’s hope, but had no idea how present it was.

Our church starts at 9:00am and this past Sunday it started a little late. Our daughter, who never talks about Tori but has known the whole story since she was diagnosed, saw Tori’s name on our prayer list, where it has been for over a year. She said, “It’s so nice that we pray for Tori. Don’t worry, she will be okay, Mommy.” After church, as we headed to my parents, I received the text of Tori’s departure.


One thing I realized last night was that I believe my tendinitis – which I developed suddenly about two months ago – served a greater purpose than I realized.

I developed tendinitis in my left arm from sitting and holding her for many hours each day. It got so bad that I could barely grab a water bottle, and so weak that it was difficult to hold her head up. Because of this, I was forced to lay her on her pillow more frequently in order to alleviate the pain. In the past two months, I gradually held her less and less.

I truly believe God was preparing me to never hold her again.


 

For these things – and more – we are so thankful. We cannot help but praise the One who made her, the One who so evidently put all of this into place in His perfect timing. His Word is yet again proving to be true: “the joy of the Lord is your strength!” (Nehemiah 8:10).

I have long been taught that thankfulness is the antidote to anger, jealousy, bitterness, and other such attitudes. This week I have learned that thankfulness can also lessen the blow of deep sorrow.

We will – and do – have moments of sorrow as we miss her presence here with us, but we stand in awe of our loving and gracious God who so perfectly arranged all of these details so that we could find peace in her passing.

You saw me before I was born.
    Every day of my life was recorded in your book.
Every moment was laid out
    before a single day had passed.
– Psalm 139:16 –

A Prophetic Note Received

I started this draft of this post over a month ago, and I never posted it for some reason. Now I am glad that I hadn’t posted it because God truly did do a miracle in Tori and it is evident that this message to us was prophetic ❤️

We had been shaken because of a rough week with a few scares and many tears about potentially losing Tori. Then this came. Timing is perfect. We didn’t post about the scares at all, so this shows how God has been moving in the hearts of His people to encourage us.

Lesa and Brennan-I was a member of Dreamers and Builders and have been following your story for quite some time. Tori holds a special place in my heart. I think about her often and I have done my very best to lift her up in prayer over the past year. Your faith in God is inspiring and I want to commend you both for putting everything in His capable hands. 

My relationship with God has grown considerably strong over the past few months. I’ve been in growing closer to Him every single day. This morning, I decided to lift up your family in passionate prayer. 

While I was praying and praising, God revealed something to me. He told me that Tori’s story is nowhere near done. He is just about to get to the really great part! He revealed that her life was always part of His plan and that he was not going to orchestrate a story for His faithful children that was not going to have some surprise twists and not going to give him the ultimate glory. 

I believe that something that can only be provided and done by God will be coming your way very soon. I have no idea what it is or could be, but I am being told it is beautiful and glorious and that you will be delivering praise to Him for it. I truly believe this with all my heart. 

I felt the need to write this to you because I feel that you need to hear this right now! I just feel like you may be starting to succumb to sadness and now is not the time! God wants you to no that there is no place for sadness right now, because he is not done! He is about to deliver a surprise. 

So praise Him right now for whatever is coming your way and believe…. Believe that your daughter is part of His divine plan and his plans are always glorified!

Silence 

  

For the past four months we have had the constant humming of an oxygen concentrator in our home. Every few minutes we would hear the loud noise of the suction machine. There was constant noise and we eventually became numb to it all…

…until it stopped.

We turned off the oxygen concentrator when Tori went to Heaven and were immediately aware of the loud silence that filled our home. 

When I woke up this morning our home was completely silent.

As it has been said before, silence is deafening.

It is difficult, because those machines helped keep Tori comfortable and reminded us that she was still alive.

But, more than anything, the silence is comforting

It means that our Tori is no longer reliant on supplemental oxygen, suction machines, and other devices. She is KRABBE FREE. Her body is no longer being ravaged by this horrific disease. 

As Brennan has said many times, we are inherently selfish humans so we never wanted to let her go. Yet, as parents, the most selfless thing we could do was allow her to go to Heaven as she did, where we KNOW we will see her again someday soon and spend eternity with her.

When Tori left us on Sunday, she couldn’t smile, talk, move, laugh, yawn, or even sneeze. She needed oxygen to function. She was broken.

Our hearts are so overwhelmed with joy at the knowledge that she can do ALL of these things and even more now that she is with Jesus.

Yesterday her brain and spinal cord were donated to the University of Pittsburgh to further their research of Krabbe.

Today we will take this dress and (a duplicate of) her buddy to the funeral home for them to dress her for the last time. We have chosen to not see her body again on this earth because she isn’t in it. 

Our lives will never be the same, but we will continue to live as we did while Tori was with us – with purpose, with love, and with JOY. 

We taught her to live with joy and love despite our circumstances, and we need to continue to live that way until we meet her again. It won’t be that long in the grand scheme of eternity. ❤️