Make a Difference

The What or The Who (Not the Band)

/ lesabrackbill / 1 Comment

Last week’s sermon hasn’t left my mind much since I heard it.

The focus was on 2 Corinthians 5:14-16, 19-20.

“Either way, Christ’s love controls us. Since we believe that Christ died for all, we also believe that we have all died to our old life. He died for everyone so that those who receive his new life will no longer live for themselves. Instead, they will live for Christ, who died and was raised for them. So we have stopped evaluating others from a human point of view. At one time we thought of Christ merely from a human point of view. How differently we know him now!

For God was in Christ, reconciling the world to himself, no longer counting people’s sins against them. And he gave us this wonderful message of reconciliation. So we are Christ’s ambassadors; God is making his appeal through us. We speak for Christ when we plead, “Come back to God!””

‭‭2 Corinthians‬ ‭5:14-16, 19-20‬ ‭NLT‬‬

This passage highlights a few important things for our life on this earth:

  • Christ’s love should control us. Not influence us, but CONTROL everything we are and do.
  • We are ultimately here to help people know Jesus and to see them as He sees them.
  • We are ambassadors entrusted with this great work!

The pastor commented that so often in this life we (are taught to) stress about the answer to the question, “what am I here for?”

We wonder if we’re accomplishing that which we are here to do, and we often allow that question to cause unnecessary anxiety and fear. “What is my purpose? What if I never find it?” We allow that to drive our choices and actions.

I know people who have left their “secular” career to do something more “spiritual” while missing the fact that God needed them exactly where they were to be a light for Him (#MissionalLiving).

Instead of focusing on what we should be doing, the pastor said that we should be focusing on this question: “For whom am I here?”

Who, not what.

Who has God placed in our sphere of influence? Our family, friends, neighbors, and coworkers are our purpose here.

Most importantly, we should never pursue the “what” at the expense of the “who” because EVERYTHING we do is just an excuse or a platform to lead others to Jesus. Everything.

We all have gifts and strengths and we have roles to play with those gifts and strengths; and we all have stories that others need to hear. God can use any job, any situation for His purposes, if we allow Him to do so.

In closing, he encouraged us to ask God to breathe mission into our current life and circumstances instead of asking Him to change them, to be content with the what and focus on the who.

This is relevant to me in a unique way:

Lately I’ve been struggling with being content with the sales of my book. Numbers. Rankings. Influence. This part of my journey has not gone as I expected.

Before it went to press, I had a modest goal in mind, one that I deemed easily – and quickly – attainable. I poured my heart into telling Tori’s story and it is the most vulnerable thing I have ever done. Her life and the lessons learned from her life matter and I just knew that I would sell thousands and thousands of copies!

As of today I have only reached 10% of that goal. Ten.

(I don’t tell you that to make you feel guilty if you haven’t bought it – though I wouldn’t mind if you did decide to buy it! 😉 There’s a point to all of this.)

Of course, I’m humbly thrilled that ANYONE has wanted to read it, and each sale means that someone new has learned about Krabbe, about Tori, and about our Heavenly Father. THAT is what matters.

But, if I am honest, I am also disappointed because I thought I would sell more given the number of people who have followed Tori from the beginning.

I’m human, after all. Pride sneaks in when we least expect to see it. I worked hard on the book and emotionally invested myself in it, so I obviously want it to “succeed” in terms of high numbers. But is that success?

I had been trying to brainstorm how to increase sales, how to market it on a greater scale (with zero dollars) in order to get the numbers up. It began to consume my thoughts (when I wasn’t caring for babies).

And then I heard that sermon last weekend and I understood what the Lord was asking of me:

Do I really trust the God of the universe to put my book in the hands of those who truly need the message? Is it about the number sold or about the soul reading it?

As one of my favorite songs says, “You’ve brought me this far, why would I question You now?” He opened the doors for it to be published, but do I trust His intentions? Yes. I just needed to be reminded, to refocus.

It’s not about numbers, it’s not about selling millions (though that would be incredible): it’s about my obedience in telling our story and allowing God to use it as He sees fit. Him, not me.

It’s so much more than just book sales. My book is just another way – not the only way – God is using my circumstances, my story, my faith, and my life to reconcile people to Him.

I have to remember this. Daily. And whenever I am tempted to be concerned with the numbers (often), I need to surrender it all to the One who is in control. And I need to pray that He will continue to use my life for His Kingdom and glory.

That’s what it’s all about.

Our IVF/Adoption Journey

/ lesabrackbill / 4 Comments

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!  

Will They Wonder?

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As we walked through the Hershey Gardens today after locating the tree placed there in Tori’s memory, I noticed all of the bricks and sculptures that had been placed in remembrance of a loved one throughout the gardens. 

I tried to read as many as I could as I was – for the first time ever – filled with a curiosity about the stories those bricks and sculptures represented.

Who were those people? What kind of a legacy did they leave? Did they live a long life? Were they loved and appreciated?

For the first time, I wondered about Tori’s tree and whether or not people will actually read the sign, and if they do, will they wonder about her? Will they perhaps Google her name to find out why such a young life is being memorialized in such fashion?

When people see her tree, will they wonder about her story, or will they just overlook it and walk on by?

Because she was so very important to us, it’s hard to think about people disregarding her tree and not wondering who she was. But, I was reminded today that I do it all the time to others. 

People have their loved ones’ names put onto bricks and other memorials so that they might be remembered and not forgotten, and we walk right by (or over in the case of the bricks), not even giving them a second glance.

While I cannot force people to read her name and wonder about our precious girl, I can make sure from now on to read such memorials and think about what they represent, knowing that the person must have been beloved for someone to have placed something like that in their memory. I can pray for those left behind – pray that they learn to love Jesus, love others, and leave a legacy that changes their family for the better.

Life is so very short, so let’s continue to love well and remember those who have gone on before us, however we choose to do so. 

Call to Action in Pennsylvania

/ lesabrackbill / 9 Comments

Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done in Pennsylvania.

The meeting was productive and we are ready to see this legislation all the way to the governor’s desk so that lives of children will be saved in our state.

This legislation is vital because, without it, Hannah’s Law (Act 148 of 2014) will be rendered useless due to the way that Screenings are done and the way that the process works in Pennsylvania. This bill would limit the Department of Health’s ability to make changes to the mandatory Newborn Screening program, like they did with Hannah’s Law (chose only ONE of the six mandated diseases to add to the mandatory testing list).

You can read the co-sponsorship memo and the attached draft of the legislation here.

If you live in PA and would like to encourage your legislator to co-sponsor this legislation, you can go to this website to find your legislator.

Underneath the photo of your legislators you will find an email icon through which you can contact them.

Here is a sample letter I wrote that you can freely customize to fit your family:

Dear _______________,

I am writing in regards to upcoming legislation from Representative Angel Cruz regarding Newborn Screening in hopes that you might be willing to co-sponsor and support this important legislation.

The bill does not yet have a number but the co-sponsorship memo was dated March 21,2016.

The way that Newborn Screening is conducted in Pennsylvania must be reformed. We are currently last in the country (by a wide margin) in the number of tests that we perform on babies, and these tests can save lives because early detection for many diseases is the difference between life and death.

This legislation is important to our family because ___________________________…

Please consider helping save the lives of children in Pennsylvania by supporting this important legislation.

Thank you,

__________________________

If that doesn’t fire you up, check out the map below. Pennsylvania is LAST in the nation by a wide margin in the number of diseases for which testing is mandatory.

  
We are hoping to see another bill introduced in the near future to reform NBS even further, but we have to take things one step at a time. We will need your support every step of the way and are so thankful for all you have already done.

Rare Disease Day at the Capitol

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Today was an exciting day for Tori (and us).

Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol.

Tori and I (along with our friend, Michelle, who often drives Tori and me places so that I can care for Tori in the back) went to represent Krabbe and other leukodystrophies.

We didn’t know what to expect, exactly – we were told beforehand that there would be networking opportunities and a press conference. So, we prepared a flier about Krabbe and brought Tori’s business cards along.

There were many rare diseases represented, but, of course, it wasn’t even a fraction of all the rare diseases in the world (thousands). There were several speakers, and most of them have rare diseases themselves. Some legislators from the newly formed Rare Disease Caucus spoke as well.

We had the opportunity to meet Representative Kevin Schreiber from York County (he was standing right behind us and started a conversation) and he asked many questions about Krabbe and Tori. He was so kind and talked to her ❤

We also met Senator Jay Costa and saw his press secretary again (we met with her about one month ago).

There are so many rare diseases that it can seem overwhelming. Each one may affect just a few, but together they affect many.

I’m glad we could participate today and tell a few more people about Krabbe.

One of Tori’s “fans” recognized her and came to say hello!
Visiting our state rep’s office to introduce Tori
Group photo of those with a rare disease
Meeting Rep. Schreiber from York County
Meeting Rep. Schreiber from York County
Meeting Rep. Schreiber from York County
Meeting Rep. Schreiber from York County
The new Rare Disease Caucus
Sen. Jay Costa (right) meeting the NORD representative

Thanks to our friend Michelle for taking the photos above! You can see more of her work here.

Here are a few from my phone: 

   
    
    
   

Update on the Implementation of Hannah’s Law

/ lesabrackbill / 1 Comment

We have an update on the status of Hannah’s Law (Act 148 of 2014).

Read 2014 Act 148 – PA General Assembly here.

I started making phone calls about three weeks ago to determine when the Newborn Screening Advisory Committee would be meeting so that Brennan, Tori, and I could attend.

I found out that the Committee met on December 17, 2015.

(Remember that we all wrote to the Department of Health in November and not a single person mentioned this to us.)

It took a few more phone calls to find out what was decided (since they did not post an update in the PA Bulletin), but I finally reached the correct person and received the following information:

I spoke with the Director of the Division of Newborn Screening and Genetics.

She informed me that the panel decided to only make screening for Pompe (just one of the genetic conditions in Hannah’s Law) mandatory statewide. Pompe is the only one of the LSDs that is currently on the Recommended Uniform Screening Panel  which is why they added that to the Pennsylvania panel.

It is now up to each hospital whether or not to screen for the other lysosomal storage disorders (LSD) in the law.

“Where you live should not decide whether you live or whether you die.” – U2

I asked her if the hospitals would screen for Krabbe if parents asked for it, and she said no, but that they would refer them to Hunter’s Hope for the supplemental screening kits. This information conflicts with what our research told us – that the hospital would test if you specifically ask – so it is safer to just order the kits since we aren’t sure what is actually happening.

All of this supposedly went into effect on Friday, February 5, 2016.

Here’s the problem: we have confirmed ourselves that several Pennsylvania hospitals are telling people that they are screening for these diseases and we can say with confidence that they are NOT screening. NO hospital in Pennsylvania is actually screening for Krabbe or the other LSDs in Hannah’s Law right now. 

 

Tori, Brennan, and I went to the State Capitol today and met with the staff of two different legislators to discuss this issue and to talk about possibly introducing new legislation to change the way that Newborn Screening is done in Pennsylvania, because it shouldn’t be up to the hospital to choose. Lives are at stake and geography shouldn’t dictate life or death.

Tori had fun lobbying with us : )

 

We cannot say much more at this point, nor do we have any actions for you to take. Things are happening and it’s exciting, we just cannot share the information quite yet. We wanted to provide this small update since so many have asked us lately about Hannah’s Law being implemented.

The legislature will be back in session in March and we hope to have additional updates for you at that time.

It never hurts to write to your representatives and Hunter’s Hope has made that incredibly simple! Go to this link and you can customize a letter they wrote and it will go to the appropriate people.

We feel encouraged by our meetings today and by the potential for great change to happen in Pennsylvania that will save lives. However, we also know that the fight is only beginning.

 

Unexpected: Our First Year Post-Diagnosis

/ lesabrackbill / 8 Comments

Brennan and I each wrote our own posts reflecting on how we were doing one year ago, and you can read them here and here if you missed them. We joined together in this post to write about how we are doing now, which is far better than we would have expected.

Unexpected is the perfect word to describe the past year of our lives.

Krabbe was – and is – unexpected. Unwelcome. Unwanted.

If you had asked us what we expected life to be like be one year after finding out that our daughter was dying, I’m not sure what our response would have been.

However, we are certain that we would have been wrong given the state of our hearts and the quality of our lives today.

It’s likely that we expected:

  • Grief
  • Pain
  • Constant sorrow
  • Exhaustion
  • Regret
  • Stress
  • Bitterness (toward Krabbe)
  • Support from friends and family
  • God’s continual presence and love

Some of those things did indeed happen. But, we can say with confidence that the things we didn’t expect have been far more constant and powerful:

We certainly didn’t expect that such an amazing, unforgettable year was waiting for us.

img_5828

 

One year ago today we were numb. Devastated. Grieving. That was to be expected. We were living in a nightmare that we couldn’t escape. Our baby was dying and there was nothing we could do. There was so much we didn’t know then, so many fears that existed in our hearts and minds. This was all so unexpected.

We expected the last year to be more sad, more grief-filled than it ended up being.

Yet, our grief and fear slowly turned to intentionality, to chosen joy.

Today, we can honestly say that we are joy-filled, content, calm, grateful, hopeful, intentional, fully present, and dedicated to ensuring that we give Tori the best possible life we can give her with whatever amount of time we are given.

Today, we love greatly, live fully and abundantly, forgive more quickly.

Today, we cherish every moment more than before.

Today, we are more content and more gracious.

Today, we feel at peace with the future. We definitely never expected that.

We are certain that God will heal her – either here on earth or by taking her to Heaven to be with Him. Heaven is the best place for any of us to be, so that thought brings us peace beyond understanding in the midst of this tragedy.

We know that we have done our best to care for her, to give her the best possible life we can. If we were to lose her tomorrow, we don’t believe that we would have many regrets because we have lived so intentionally with her and loved her abundantly.

We cannot change her prognosis, but we have allowed it to change us.

 

For the most part, our days are happy and joyful; however, that doesn’t mean that we don’t have our moments of grief and sadness. We allow ourselves to feel the pain and grief when they hit us – we don’t ignore reality. We still plead with God to heal her here on earth and use her testimony to change the world. Grief will always have an occasional presence in our lives.

We believe that there will be a time to grieve, but that time is not now.

What is most important now is to be fully present with Tori in order to make the most of these precious few months we have together on this earth.

Overall, we have changed for the better because of Tori. She has impacted our lives and the lives of others in ways we never could have imagined.

You may be wondering how this is possible. How can we have such a hopeful perspective?

God.

It’s that simple for us.

We have seen God work in so many ways both directly in us and through the kindness of others, and we have been so overwhelmed by Him and His love. He has been with us every step of the way, and His presence in our circumstances has been obvious. That was not unexpected because He is always faithful. He did NOT cause Tori to have Krabbe, but He has chosen to allow it for a reason we don’t yet understand.

It all comes down to this: we serve a sovereign God who redeems us and brings good out of bad in our lives. He is good, He loves us, and we trust Him fully. Even in this. He has never failed us or abandoned us – why would He do so now? 

 

We all want our children to have a positive impact on the world, and Tori is already doing that in powerful ways. ❤️  God is working through her and through us, and we know that Tori will continue to have an impact for years to come.

We don’t know how much longer Tori will be with us on this earth, but we do know that we will continue to cherish each and every moment and never take this life for granted again. ❤ That can be expected.

If Tori has impacted your life in any way, we’d love to hear about it! Please leave us a comment and let us know – it would be so encouraging to hear your stories. ❤