Hope

So, We Missed a Wedding Today

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We left our friends' house in the Lynchburg, VA area for Raleigh around 10:30am today to attend our friend Breanna's wedding. We allowed for plenty of time to get there and were enjoying the beautiful day.

We stopped along the way at a CVS to get a few things; I came out of the store, put the key in the ignition and I couldn't even turn the key. It was bizarre.

Brennan tried, I tried, and finally, after replacing the battery in the key fob, we called AAA. By this time it was noon, and the wedding was just two hours away (and so were we). They said it would take ninety minutes or so for a tow truck to get to us.

We were going to miss the wedding.

After a few minutes of being grumpy and frustrated, we decided to make the most of our day. It was a great temperature, not a cloud in the sky, and we happened to have camping chairs in the van!

We got some strange looks from people, understandably, but whatever. 😄 We were comfortable and having fun.

A kind woman with four children (including a four week old baby) asked if we needed any help and offered her jumper cables – too bad our battery was SO dead that it didn't work. Still, her kindness was so appreciated! She was the only person to offer assistance.

When the tow truck arrived (just as the last of our shade was disappearing) we realized that there weren't any open repair shops around! Thankfully we found one and they were able to fit us in.

The van was done by 4pm, so we missed the wedding entirely. While we aren't happy about this, today was another reminder that we have a choice to make every situation joyful or miserable.

We had a good day despite the disappointing outcome of missing the wedding. We chose to look for the positive and found a lot of things for which we could be grateful! ❤️

  1. It was breezy and nice.
  2. We had chairs in which to sit.
  3. We had access to a restroom!
  4. We had a AAA membership.
  5. We had water and food.
  6. We had an opportunity for quality time.
  7. We made memories together.
  8. The repair was not expensive!

Remember in moments like this that it's going to be okay, that someday you will look back and laugh, and that there's always something for which you can be grateful. ❤️

Hunter’s Hope Symposium 2017 – Day Two

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Today we heard updates from several hospitals that are working toward becoming Leukodystrophy Centers of Excellence in order to better care for these children and their complex needs, and we also heard research updates.

I'm going to jump right to the research updates because this was incredibly exciting.

First, we were told that Dr. Escolar has a paper that will be published the first week of September (a week AFTER the next NBS Advisory Panel meeting in PA) and this paper could very well get Krabbe onto the federal RUSP because it answers questions that previously weren't as clear. Why does the RUSP matter? Many states will only screen for diseases that are added to the Federal RUSP; once Krabbe is added, many states will automatically test for it!

As you probably remember, one of the things we (and many other families) have been told as we advocate is that they need published data. We've all been waiting and waiting for something to be published to help our case for adding Krabbe and this will apparently be it!

Second, and THE most exciting part: they are so close to a cure for Krabbe. The doctors didn't say it like that but it was apparent that is what they meant. Dr. Escolar and others have been treating twitcher mice with Krabbe successfully using the bone marrow transplant AND gene therapy together and the outcomes have been unbelievable!

This chart shows the life span of mice who were untreated, treated with bone marrow transplant only, and a combination of the two. The combination therapy is the top blue line. The mice who had the combination therapy in 2015 are STILL LIVING and show no signs of the disease!

The FDA has approved the idea but it won't go to clinical trial for 3-5 years unfortunately. In the meantime, our hearts are so hopeful because this is incredible news.

Thirdly, they discussed the improvement in the NBS test itself and the near-elimination of false positives using two factors and not just one (low GAL-C activity and high psychosine levels) and by using a computer algorithm to sort the data that has proven to accurately predict the form of the disease (early or late onset).

I tried to simplify all of this the best I could. To sum it up, research has made leaps and bounds in just the last two years and they are closer to a cure than ever before!

Dr. Kurtzberg from Duke also reported on the success they are seeing in stem-cell treatments of Cerebral Palsy and Autism. Stem cells from cord blood are incredible tools and doctors are doing amazing things with them.

Hunter's Hope does such an amazing job of not only funding research but also coordinating the dialogue and cooperation between scientists who are all working toward the same end. If you would like to support them, you can click here! Our goal is to raise $3,000 for them before Friday's walk!

Hunter’s Hope Symposium 2017 – Day One

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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!

Our IVF/Adoption Journey

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As you may have gathered, Brennan and I would like to expand our family and have more children. Our hearts long for this, and we’ve been working hard to make this happen. Unfortunately for us (and others with genetic mutations like ours), it’s not simple.

After much prayer and wisdom-seeking from others over the past two years, we have decided that it is unwise to do this “naturally” and are instead looking to use IVF and/or adoption as a means by which we can grow our family. We started the IVF process last summer but were halted in August because of a lack of funds. We’d love to do both IVF and adoption this year, but that would mean coming up with about $50,000 or more (adoption ranges from $25,000-40,000 or more!). Even with our frugal lifestyle, that’s simply impossible. 

This is why I went back to work in August. This is why we sold our house, paid off Brennan’s student loan, etc. – by doing so, we freed up a great deal of monthly expenses that we can now put toward this endeavor. We are trying to save as much money as possible to go toward IVF/adoption, but even with all of our efforts we will still humbly admit that we need help to raise the funds necessary.

You all have been SO generous to us over the past two years so we didn’t want to just do a fundraiser to ask for money. We wanted to offer YOU a gift, something in return…and we have the perfect thing.

As you may remember, I wrote a song this summer about how I felt after Tori was diagnosed. Thanks to our amazing friend, John Amodea, the song has been recorded and is available to download!

Here’s what we’re hoping will happen: enough people will buy the song (via the “Tip” button on the NoiseTrade page) that we can have/adopt a child in 2017!

If you cannot afford to buy the song, please download it as our gift to you, and perhaps share the page on your own page.

If you would like to buy the song, go to this link: http://noisetrade.com/lesabrackbill/lord-remind-me

We’re doing this as a “pay what you feel” download…and whatever you can give is so greatly appreciated. So feel free to change the “tip” amount to whatever you would like to give.

Please share our story and the song with others, too, if you are willing.

We hope you enjoy the song and that the Lord uses it to encourage you.

In addition, Brennan and I will be hosting an online auction to help cover the cost of IVF/adoption as we seek to expand our family! The auction will be held on Facebook (January 20-25, 2017) and we are in need of donors!

Here’s the link to the Google Form we created for item donations; if you are a consultant for a company, an artist, seamstress, craftsman, musician, etc. and have something you would be willing to donate to our auction, please fill it out so that we can start to build our inventory! Or, if you have a service you can provide (massage therapy, hair cuts, photography, etc.), that would be great as well!

We’d love to have at least 100 items in our inventory!

You can access the auction here.

We will gladly credit you/your business for your donation and offer a link to your website/Facebook page as well in hopes that you will be blessed by this auction as well.

We want to be parents again more than anything. With your help, we can do this!

Thank you in advance for your support!  

A Season of Waiting

/ lesabrackbill / 1 Comment

It’s hard to believe that it’s October already. September was a blur, filled with many changes and hardly any free time. Now it’s Fall and the temperatures have cooled, the leaves are starting to change, and we are in a season of waiting and expectation.

My job has been going well, but they’ve been putting me on the schedule for far more hours than I had requested, leaving me feeling exhausted and with little time at home. Between working five days a week (as opposed to the requested 2-3 max) at The Hotel and one day a week at church, I’ve been left with only Sundays off consistently, and I’m hoping that changes soon. I haven’t had much time to write, read, or rest, and I feel weary.

In addition to working so much, we had to say goodbye to Brennan’s car last week, leaving us with only one vehicle for the foreseeable future. This means many hours of sitting at The Hotel for one of us when our shifts don’t coincide (all too often). Now one of the windows on the van isn’t working properly and we’ll have to have that fixed soon. Money is tight, we each have our own minor physical struggles (ear infections for me, leg injury for Brennan), we’re too busy (and that is out of our control), we miss Tori, and we’re tired. It’s so easy to feel discouraged right now.

Tori has been in Heaven for six months and it’s amazing how easily it is for us to lose perspective already. After all that we’ve been through, all that God has brought us through, it’s still so easy to get wrapped up in all the things that aren’t going our way. We realized this earlier this week and we corrected our perspective – what we’re enduring now is nothing compared to what we went through with Tori, and we can’t let ourselves be overcome by these trials. We can’t allow ourselves to forget that God is holding us in His hands and is in complete control! He is faithful, He is good, and we are trusting Him during this season of waiting and uncertainty.

There are some exciting things happening this month for us:

  • We’ve been working feverishly to get our house ready to be on the market, and that will happen THIS WEEK! We’re so excited! You can read about why we are selling our home here. We cannot wait to be DEBT FREE!

  • We were featured in the Lancaster newspaper yesterday and are so thrilled that Tori is continuing to make waves across the state!
  • My manuscript is being edited THIS MONTH and we hope to start pitching it to publishers in November! I also have another book idea brewing, so I hope to start working on that project soon.
  • We’re headed to California this week for a quick trip to Disneyland! I was supposed to photograph a conference in SoCal and had already purchased my plane tickets when the conference was canceled…so, we decided to go to Disneyland instead!
  • At the end of the month, Brennan and I will be taking a LONG awaited trip to Nevada, Utah, and Arizona with Mission: Imperative where we will be going to most of the National Parks in the area! We cannot wait for this adventure, especially since all the details are taken care of and we paid for the trip long ago! What a great way to celebrate six years of marriage doing something we both love – traveling! ❤
  • I’m continuing to write for The Transcend Project along with members of our church. Please check it out! There’s SO much great content on there!
  • Also, I finally decided to release the live recording of the song I wrote this year (my first and only!). You can hear it here.

A few prayer requests:

  • Please continue to pray for us as we continue to navigate life without our Tori. We miss her terribly and there isn’t a day that goes by without us thinking about her constantly. We’re still doing well, but life is obviously very different without her.
  • Please pray for wisdom with decisions regarding potential offers on our home and where we will live after the house sells.
  • Please pray for favor with publishers, and that the right one will step up to help us tell Tori’s story and save lives through Newborn Screening.
  • Pray for physical healing for both Brennan and me.
  • Pray for us during this season of “waiting” for so many things – our home, future children, the book, etc.

Trials in this life serve a few purposes, but one of the most important is this: this world is NOT our home. It can never make us fully happy – only Heaven and the One who reigns there can. These difficult times won’t last forever – we just have to remember that. And so we wait on the Lord who is always faithful and good. ❤

Hunter’s Hope Symposium: Thursday 

/ lesabrackbill / 1 Comment

Today we heard reports on the Leukodystrophy Care Network that Hunter’s Hope is working hard to implement around the country. They are the voice of the family in ensuring excellent care and treatment for their child.

You can read more about the LCN here.

Leukodystrophy children have unique medical needs and issues and most hospitals have had little to no experience with these diseases.

The centers are going to be as geographically spread out as possible so that traveling can be reduced for as many families as possible. Currently, most affected families go to Pittsburgh or Raleigh. Once the LCN is established, there will be many more options.

Many times, doctors see kids like these and don’t bother to treat them because they are terminally ill. One of the questions asked of the potential of LCN center is this: 

‘Are you treating this child as though they are living? Or are you saying “go home, there’s no treatment?”‘

Children’s Hospital of Philadelphia became the first Leukodystrophy Center of Excellence and it was interesting to hear their presentation given that they are so close to where we live.

I loved this quote:

Dr. JoAnne Kurtzberg from Duke University spoke and gave great insight into what they have done in the world of leukodystrophies.

As always, Victor was very attentive 😄

Later, we heard reports on the current research findings – which are so promising! – and heard more about the results of the ten years of screening for Krabbe in New York State. 

They are also very close to improving the NBS test for Krabbe by looking for two specific biomarkers instead of just one. 

Exciting things are happening in the quest to find a cure for Krabbe and other leukodystrophies, and the future is bright. 

Overall, we feel encouraged by what we heard today and are so glad to be here. 

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.