Family

Hunter’s Hope Symposium 2017 – Day One

/ lesabrackbill / 1 Comment

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!

The Big Move

/ lesabrackbill / 1 Comment

I’ve moved far too many times in my life.

  • From Hayward, CA to Red Bluff, CA (and then another move within Red Bluff).
  • From Red Bluff to Azusa (far too many moves to count while I was in college!) – 525 miles.
  • From Azusa to Glendora (and two moves within Glendora).
  • From Glendora to Harrisburg, PA (five moves since I moved to Pennsylvania) – nearly 3,000 miles.

Each move has brought with it new adventures, new challenges, new surroundings. Most moves were welcomed, though some came from circumstances I could not control.

This move is different than all of the above.

This move means leaving the home we fixed up, the home where we became a family, the home from which Tori went to Heaven. So many memories in less than four years.

As of this morning, we owned this house for three years, eleven months, and eighteen days. 1,449 days. I haven’t lived anywhere this long since I left my parents’ house when I was eighteen.

And I think that’s partly why I have struggled with the idea of moving. I know it’s the plan, and I know it’s a great one because of the financial progress we will make. My heart hasn’t been communicating with my mind on this one.

But, it is finished. And I feel like this morning brought me closure. 

Let the new adventure begin ❤️

Sacrificing the Good for the Great

/ lesabrackbill / 3 Comments

I knew this would happen.

We bought our first home in December 2012 as an investment, knowing that we would fix it up and then sell it and pay off our $50,000 in student loans with the profit.

I did well for the first year or so with not being attached to it. I remembered that it was only a temporary home and that helped me not be attached emotionally.

But, somewhere along the line, it happened. I became attached.

Now that we are so very close to listing our home, I am finding myself feeling sad because I don’t want to leave it. It’s the perfect little home and we (with the amazing help of our friends and family) have made it look so great! We have had so many memories there. It was our first home together. I have lived here longer than I’ve lived anywhere since I left my parents’ home. It’s where we lived with Tori. And it’s where we said goodbye.

My mind loves to wander and reminisce, and I try to find ways out of selling it. But, I have to stop and remind myself that we are sacrificing the good for the great.

Our home is good. 

Being debt-free is going to be great. 

I can’t even imagine how amazing it will feel to have $500 extra in our savings account each month instead of it going to student loans. We made a wise investment in this home and we are so close to seeing it pay off. And that feels so good, but that doesn’t mean it will be easy.

I remind myself that we can always find another home to make our own. Once we are debt-free we can more easily live the life we want to live.

Sometimes we have to sacrifice what’s good in life for what’s great, and it is always worth it, even though it’s difficult. Now if I can just convince myself…

(As a side note, if you’re looking for a beautiful 1,800 sq. ft home in the Colonial Park/Lower Paxton area, let us know!)

Here are a few pictures of the remodeling we’ve done to our home:

Busy Summer and a Much Needed Update

/ lesabrackbill / 8 Comments

I haven’t blogged much this summer and that has partially been intentional, partially not. Brennan and I have been traveling, working many weekends at MHS, spending time with family and friends, helping with church activities, doing photography for an amazing camp, hosting many RYFO bands, and so much more. We’ve been enjoying life and, though busy, it has been restful and refreshing.

We’re overdue for an update, so here’s what we’ve been up to:

Writing: It has felt good to not pressure myself to write, but to only do so when inspired. I have been writing for a new site that launched in July, as well. Check out The Transcend Project for some great articles about life as a Christian and life in Harrisburg, PA from several different authors. I’ve also been working on my book and the manuscript is almost completed. I have likely found an agent, my book proposal is in process, and we’re still hoping to start pitching the book by October.

The House: Our kitchen is finished and it is stunningly beautiful. We are hoping to list the house by the end of August, which means a lot of work needs to be done in order to be ready for showings (i.e. I need to put my stuff away 😉 ).

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(For those who aren’t aware, we bought our home 3.5 years ago with the intent to flip it and sell it; it was bank-owned so we paid far less for it than it is worth. If we sell the house, we can pay off our student loans – $50,000 – and be debt free. Even though we love our home, we will love being debt free even more, and it will allow us to live life so much more freely than we currently can.)

If you’re looking to buy a home in the Colonial Park/Lower Paxton area, we know of a great one that will soon be for sale! 😉

Children: We so desperately want to be parents again, but there are serious genetic risks if we conceive naturally (Krabbe may be a recessive gene, but it is aggressive and it’s very likely that we’d have another baby with Krabbe). We have some options, but they are all incredibly expensive and we simply can’t afford them at the moment. We’ve had some setbacks in that area and it has been incredibly disappointing. BUT, God is sovereign and we continue to follow Him and trust His timing.

Tori’s headstone was placed around her birthday and it is beautiful:

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Her tree was also planted at The Hershey Gardens:
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Work: As if I need anything else on our plate, after consideration and prayer, I decided that it would be wise to get a part time job since we don’t know when (or if) we will be having more children. I accepted a position today at The Hotel Hershey and will start at the end of August. It will only be 2-3 days per week with the option to pick up additional hours to assist my co-workers, which will still allow me the flexibility I need to continue to write, lobby, do photography, and serve the community with our church.

Newborn Screening: There is another Advisory Panel meeting in two weeks and I will be attending. I will give a full update just like last time.

Brennan is running in the Hershey Half Marathon in October with many other people from our church. He wanted to run the race in Tori’s honor and he is working hard to make this happen. Please pray for his training, that he would build the required endurance and that he would finish the race well.

Please continue to pray for Brennan and I for these things – especially the book (for favor from the publishers), the house (that it sells quickly and for the amount needed to pay off our student loans), and future children (that we can have them).

We are doing well, continuing to praise the Lord for the gift that Tori was, and learning to live life without her by our side. God is good, God is faithful, and God is sovereign.

Hospice Butterfly Release

/ lesabrackbill / 2 Comments

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

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

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


We released them in unison and watched them fly away:

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

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

 

 

Even Though…

/ lesabrackbill / 4 Comments

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.

Fleeting Moments

/ lesabrackbill / 2 Comments

Before Tori was born, many people told us to cherish the early years because they would go quickly, never to return.

After she was diagnosed with Krabbe the moments moved faster and there was nothing we could do to stop the momentum. The days were fleeting, and we wondered each day how many more days we had with our beloved daughter.

As a photographer, it was natural for me to take thousands (more like tens of thousands) of photos of her, every angle and perspective possible, hoping that I could remember everything once she was gone.

But, the problem is that what can’t be captured on film is what I miss the most.

I couldn’t capture how it felt to hold her – something I did for hours each and every day. How it felt to feel her breathing. Her smell. The touch of her soft, smooth skin.

I couldn’t capture her soul, the very thing that makes us who we are.

Miss Tori has been with Jesus in Heaven for over two months now and it is still strange. The impact she had on my life is still being discovered moment by moment, and I continue to be overwhelmed by gratitude more than any other emotion.

I think of her almost every waking minute. I now understand what my Dad has said my entire life – that I am always on his mind. I don’t even try to think about Tori – it just happens.

Yesterday, Brennan and I sat down together and watched many of the pre-Krabbe videos we have of her. Hearing her talk and laugh, watching her move freely, and remembering our precious girl before Krabbe took over her defenseless brain brought joy to our hearts. She had the BEST personality, even before she turned five months old.

And I’m still GRATEFUL. Her memory brings me joy, not pain. Peace, not grief.

The KNOWLEDGE (it’s more than just a “belief” as that word is commonly used today) that we will be reunited with her one day brings such excitement to both of our hearts. It won’t be that long in light of eternity!

Tori’s earthly life was cut short, but this life is really just the beginning for all of us anyway. I heard this song recently and I loved the lyrics (especially knowing that Steven Curtis Chapman has also lost a child and his words reflect his experience):

God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
We’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

We were made to run through fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning.

  • Steven Curtis Chapman, “Glorious Unfolding”

We’re still doing well. The fourteen months of preparation for her death certainly have helped in the two months without her physically with us.

We’re still surprised by how easy it is to leave the house now and how lightly we can pack, how quiet our home is without the humming of machines, how free we feel due to the lack of schedule that we have now…

We have our moments where missing her is something we feel physically. A great example of this was when I first heard the song, “Eye of the Storm” by Ryan Stevenson and I was caught off guard by this line: “When a sickness takes my child away and there’s nothing I can do, my only hope is to trust in You.” Powerful truth.

Sometimes it comes out of nowhere, other times it comes out of thoughtful remembrance of our adventures with her. We’ve both shed tears in the past two months during those moments.

But, because of God and who He is, we are hopeful above all else and remain joyful. God is doing amazing things in our lives and is still using our little girl to change lives, even after her death.

Tori was an amazing little girl and her legacy lives on. We have MUCH to be thankful for and will continue to focus on those blessings rather than her absence.

Those tens of thousands of photographs continue to make us smile as we remember the incredible life we lived with Tori, and we will continue living life abundantly until we are reunited with her forever. It will be worth the wait.