Child Loss

It All Works Together for Good

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img_0217Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no way it all randomly happened) that confirmed my calling and purpose.

Today was a vivid reminder of this verse:

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. – Romans 8:28

It all started yesterday, when I spoke at the Capitol for the Newborn Screening Awareness event. After the event, I was speaking with legislative staffers who have helped me every step of the way with moving this bill forward, and I learned that just because our bill passed (unanimously) out of committee last week doesn’t mean that it will go to the floor for a vote.  I was stunned, but not dismayed. I asked what I needed to do to move it forward and they suggested that I go to the offices of the Speaker of the House and the House Majority Leader to speak with them (or their staff) about the bill.

I “just happened” to still have two copies of the lobbying packet I had assembled months ago in my portfolio. Brennan “just happened” to be home with the boys so I had time.

So, my friend, Ashley, and I went to the Speaker of the House’s office and as we were speaking with his secretary, a man came up and was listening. He said he’d love to know more about what we were discussing and it turns out that he is the policy advisor to the Speaker (which means he can get things done!). He was very interested in the bill and in our stories, which was so encouraging.

I followed up with him via email that afternoon, and when he responded he asked if I could come for a meeting TODAY. He said he thought I deserved more than the two minutes we had together to better inform him on the bill and the current status of Newborn Screening in Pennsylvania.

Wow.

So, this morning, he asked if I could come at noon, and I went. I rushed home from MomsConnect, changed clothes, and headed to Harrisburg.

Brennan “just so happened” to be off today (for his birthday) so I didn’t have to take the boys with me, which was a blessing.

The meeting was incredibly insightful and he gave me some “homework” that will make the case for the bill even stronger as we move it forward. He offered such wisdom and practical steps to take, and I am so grateful for those 45 minutes.

He didn’t have to take the time to listen to me, or help me. But, he did.

And it was exhilarating. 

I may not desire to be in politics as a career anymore, but that fire is still within me. I so enjoyed the last two days of actually being able to work to move this bill forward. I love learning more about the process and making progress.

But, most of all, I love seeing the hand of God at work in my life, and seeing how it all fits together. 

  • Almost twenty years ago, I decided that I wanted to be a lobbyist.
  • Eighteen years ago, I interned in Sacramento with a lobbyist.
  • Fourteen years ago, I graduated with a political science degree.
  • Eleven years ago, I moved to PA and worked for a lobbying firm (but wasn’t passionate about the subject matter).
  • Eleven years ago, one of my bosses took the time to mentor me on lobbying and Pennsylvania politics (and still gives advice today).
  • Ten years ago, I decided that I hated politics and didn’t want to lobby.
  • Almost five years ago, Tori was diagnosed with Krabbe, and I learned about the need for someone to fight for NBS in Pennsylvania. I knew this was my calling. There was no denying it.

I pray that you have moments like this, moments where you can look back and with clarity see why God allowed some of the things you have experienced.

I never dreamed twenty years ago that I would someday be lobbying for Newborn Screening in Pennsylvania because my daughter died, but now, I can’t imagine doing anything else. I know that I have had this training, these experiences, to prepare me for this work, and I’m ready to work.

God is so good, and faithful, and sovereign. Always.

Newborn Screening Awareness Event

/ lesabrackbill / 1 Comment

I had the privilege to speak at the Pennsylvania State Capitol this morning as part of a Newborn Screening Awareness event. You can see the video here or read the text below.

When my husband and I decided to start a family, we imagined a life of laughter, joy, fun, and growth. We talked about our dreams for our children, and when our firstborn, Victoria, entered our lives on July 30, 2014 we were elated. We couldn’t wait to watch her grow up and see the person she’d become. 

Unfortunately, that’s not the way our story has gone. 

I vaguely remember the nurse coming in to do Tori’s newborn screening test, but after you give birth you are tired, overwhelmed, and likely not listening closely to what is being said to you. I didn’t know what NBS was, and I know I’m not the only new mother who didn’t. All babies born in the U.S. are screened between 24-48 hours after birth by a simple heel prick test. The blood is put onto filter paper that is then sent to a lab where it is tested for diseases that are serious but treatable if caught early. I didn’t know any of that then. 

We also didn’t know that while we were experiencing the joy of newborn life, another family from the Philadelphia area was fighting to get a bill passed in honor of their daughter, Hannah, who had Krabbe Leukodystrophy. They succeeded in October 2014 and Hannah’s Law was signed by the governor. This would come to be significant in our lives very soon. 

Two weeks after Tori was born, I remember saying to my husband that everything must be okay because we didn’t hear anything from whatever that test was. Oh, how I wish we’d been right. 

When Tori was five months old, it was like a switch flipped. She became a completely different baby. It was obvious that she was in extreme pain, and she regressed in many milestones. She stopped playing, laughing, smiling, and so much more. That was the beginning of our diagnostic journey that led to devastating news. 

At 6.5 months, after a misdiagnosis of reflux, a CT scan, an MRI, a feeding tube, five days at Hershey Medical Center, and genetic testing for all three of us, Tori was diagnosed with Early Infantile Krabbe Leukodystrophy, a fatal condition that affects the brain and nervous system. A condition that means death before the age of two. Friday, February 13, 2015 changed our lives forever. 

Like most people, we had no idea that we were both carriers of anything, and we never expected to lose a child to something like this. It’s not supposed to be this way. I cannot adequately describe the desperate hopelessness we felt knowing that our daughter was dying and that there was nothing we could do to save her life. Nothing. I remember being in utter disbelief that my world was being shattered into a million pieces. I remember pleading with God to intervene, to save our precious baby’s life. We live in a world where there’s almost always something that can be done to fix a problem, but not this time. It was hopeless.

So you can imagine how we felt when we soon discovered that if she had been screened for Krabbe at birth we could have treated it! We were robbed of the opportunity to try to save our daughter’s life because she wasn’t screened for it at birth. Had we lived in New York, a few hours north, she would have been screened for Krabbe, and our story would be very different. 

Our experience led us to begin learning more about NBS and we were surprised by what we learned. There are many diseases (as many as 80) that are treatable – or even curable – if caught at birth, and no state is screening for all of them. Pennsylvania is ranked 37th when compared to the other 49 states for number of diseases screened. Every state screens for a different number of diseases: PA currently screens for 37  – Tennessee, ranked #1 of all the states, screens for 70! To learn more about NBS state to state, visit babysfirsttest.org. 

Every state could improve their NBS system, for sure, but we decided to start working for change right here in Pennsylvania first. Three weeks after Tori went to Heaven, I attended my first meeting of the Newborn Screening Technical Advisory Board and have continued to do so for the past 3.5 years. 

I learned a great deal about how PA operates through these meetings, and I came to appreciate the panel and their purpose; but I also saw that the situation here was worse than I knew previously: It’s not only a problem that our state doesn’t include as many diseases as other states, but it’s also a problem that screening isn’t currently equal from hospital to hospital in Pennsylvania. Surprised? I certainly was. 

Currently there are two panels of diseases on Pennsylvania’s NBS – a mandatory panel of 10 diseases, and a supplemental panel of 27. All PA hospitals screen for the mandatory diseases, but not all of them screen for everything on the supplemental panel. In essence, your zip code determines your life or death if you are born with one of these diseases on the supplemental panel. To quote U2, “Where you live should not decide whether you live or whether you die.”

Over the years our fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole. As you can see, NBS is in desperate need of reform, and House Bill 730 (numbered for our daughter’s birthday) will accomplish all of this. 

This bill will simplify the currently overcomplicated NBS system in Pennsylvania and make it so that every baby born here is screened equally. HB730 will also pave the way for additional diseases to be added to the screenings as treatments or cures are discovered. It will also institute a NBS fee – something that 47 other states already have – which will save the taxpayers money. It’s a win-win and will make Pennsylvania a better place. Most importantly, it will save lives. 

Later this morning you will hear an incredible success story from my friend, Ashley. I love her story, I love how her family has triumphed because of NBS. But I also hope that, soon, all mothers with babies who are born with rare, fatal diseases can have the same hope and success she has experienced. 

Our daughter, Victoria, would be five years old now. She would be learning new things, preparing for school, and living a normal life. However, Tori passed away at twenty months of age because she wasn’t screened for Krabbe at birth. Tori was born just a few months before Hannah’s law was passed; that was five years ago, her law has still not been fully implemented, and Krabbe is still not part of the mandatory screening here in Pennsylvania. If HB730 is passed, every baby born in PA will be screened for Krabbe, and Hannah’s law will finally be implemented. 

Please contact your state representative/senator today and request that they support HB 730. If you are an elected official here today, please support HB 730!

Newborn Screening didn’t save my child, but it could save yours. 

 

I’m Not Sad That My Boys Aren’t Little Anymore

/ lesabrackbill / 1 Comment

I often see moms post about how sad they are that their babies are not newborns and tiny anymore, or sad that another year has gone by, and perhaps I could have related to that feeling a few years ago.

But, I just can’t relate to it now. I realize that my perspective is different than most, which is why I feel like I need to share it, especially this month.

I’m not sad that our boys are bigger, or that they are continually learning and doing new things. I doubt that I will ever look back with tears and want to go back to those newborn days.

Isaiah
Caleb

I’m thrilled and delighted that they are ABLE to get bigger. That they are ABLE to grow and learn. Why am I delighted?

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Because Tori wasn’t given that opportunity. Because Krabbe robbed her, and us, of a normal childhood. She stayed little, like a newborn, for her entire existence. She never learned to talk, walk, laugh, play. 

We would do anything, anything, to have her here today, in full five-year-old glory. 

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And it is with that perspective and passion that I write, parent, and live.

I am truly overwhelmed with gratitude, amazement, and joy with every new milestone reached, and I don’t look back at their newborn pictures with sadness (disbelief that they were ever that small, amazement at how far they’ve come, but not sadness). Part of that is because newborn twins are seriously challenging and I don’t want to go back to that phase, but it’s mostly because of Tori, our precious baby girl who was taken from us too soon. I LOVE watching them learn and grow as healthy little men.

What makes me sad is that there are babies born each year with a treatable condition but that their ZIP code determines whether they have a chance to live or not.

What makes me sad is that families like ours, families with so much love for their children, have to say “see you later” to their child and be separated from them until we get to Heaven.

I fight for Newborn Screening for Krabbe because I don’t want anyone else to go through what we’ve experienced. I want babies born with Krabbe to have the same opportunity for life as any healthy baby. I want their parents to be able to see their children achieve typical milestones. I want their children to grow up.

I know motherhood is challenging and it’s easy to be frustrated. I get it. I have my moments like anyone else. However, in those moments I remember that not every child gets to grow up, like my Tori, and I remind myself that I have so much for which to be thankful.

I pray that you can do the same. ❤

Newborn Screening Awareness Month

/ lesabrackbill / 2 Comments

(Hover over – or tap on – each state to see how many diseases are included on their NBS tests)

September is Newborn Screening Awareness month so we will be providing information throughout the month about Newborn Screening (NBS).

Here’s a brief introduction:

Newborn Screening is a crucial component of ensuring the health of all newborns, yet many parents have no idea what is being done when the test happens.

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Photo of Isaiah’s NBS

Newborn Screening (NBS) happens between 24-48 hours of birth and it involves the pricking of the baby’s heel in order to apply blood to special paper (filter paper). The blood is used to test for treatable conditions – conditions for which timing is everything.

Did you know that each state screens for a different number of diseases?

I created the interactive map above to visually demonstrate the discrepancy from state to state, or you can see the chart below. I obtained all of this data from babysfirsttest.org on August 31, 2019. 

State Name Number of Diseases Screened
Alabama 46
Alaska 53
Arizona 31
Arkansas 32
California 63
Colorado 44
Connecticut 65
Delaware 52
District of Columbia 62
Florida 55
Georgia 32
Hawaii 49
Idaho 48
Illinois 64
Indiana 49
Iowa 53
Kansas 31
Kentucky 58
Louisiana 34
Maine 55
Maryland 61
Massachusetts 66
Michigan 59
Minnesota 61
Mississippi 61
Missouri 60
Montana 32
Nebraska 37
Nevada 57
New Hampshire 39
New Jersey 57
New Mexico 49
New York 60
North Carolina 37
North Dakota 52
Ohio 46
Oklahoma 54
Oregon 53
Pennsylvania 38
Rhode Island 34
South Carolina 55
South Dakota 50
Tennessee 70
Texas 55
Utah 52
Vermont 35
Virginia 33
Washington 34
West Virginia 38
Wisconsin 47
Wyoming 52

According to BabysFirstTest.org there are 80 treatable conditions that could be screened for at birth, but no state screens for all 80. Visit their site to learn more about what diseases are included on your state’s NBS. 

This means that your ZIP code determines life or death if you are born with one of these screenable/treatable diseases. 

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

There is a national panel called the Recommended Uniform Screening Panel, or the RUSP, and there are currently 35 diseases on the RUSP. Many states screen for all of these diseases but not all. 

As you can see, there’s a lot of work to be done in the realm of Newborn Screening to ensure that every child is screened equally for all diseases, including Krabbe. One thing you can do is contact your legislators to ask them to take NBS seriously and work on increasing your state’s screening panel. 

Comment below with any questions, comments, etc. Do you remember when your child was screened? Did you know what was happening? 

 

We Have Time

/ lesabrackbill / 2 Comments

Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.

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Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.

This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret. 

With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.

Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience. 

I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.

I’m so thankful for this gift of time.

Five

/ lesabrackbill / 3 Comments

Today is Tori’s fifth birthday.

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It’s the fourth one we’ve celebrated without her in our presence, but, for some reason, this one caught me off guard and hit me harder than anticipated.

Five is a milestone. Five is an age little kids want to be (I apparently used to tell people I was five when I wasn’t). Five means kindergarten is coming. Five.

It’s hard to not imagine what she’d look like, what she’d be like.

We should be celebrating our first born’s birthday WITH her, but instead we will celebrate without her. It’s a consequence of living in a fallen world, a harsh reality of living between two gardens (Eden and Heaven), as Lysa TerKeurst has said.

It would be so easy to take the pains of this earthly existence and dwell on them, to allow them to consume us and to derail our lives. But, as Christians, we are given wise and practical advice as to how to navigate this fallen world, and in moments like these we should turn to God’s Word for that wisdom:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. And when Christ, who is your life, is revealed to the whole world, you will share in all his glory.

Colossians 3:1-4

“Think about the things of heaven, not the things of earth.” 

We could dwell on the things of earth – Tori’s absence, the unfair nature of our situation, what we lost thanks to mutated genes that caused Krabbe. But, God tells us to dwell on the things of Heaven – Tori’s eternal presence there, her healed body, her ability to live an abundant life there, the fact that we will join her someday for ETERNITY.

So that’s where we purposefully turn our eyes. Sometimes it comes easily, other times it requires faith. The root of our joy is Heaven through Jesus, so we choose to focus on what’s to come rather than on what has been.

At the Hunter’s Hope Symposium last week, one of the Krabbe -and fellow twin- mamas I greatly admire said this about her son: Jenna said that when Jackson was first diagnosed, she prayed and pleaded with God to let him live a normal life, to let him achieve milestones and do things like graduate from high school. She said she felt the Lord say that those are ordinary things; Jackson’s life would be extraordinary. 

I know the same is true for Tori. This was God’s plan of redemption all along – that she would change lives and make a huge difference in this world – a difference that will be seen in the next. He has redeemed a terrible situation and made something beautiful from it.

Whatever you’re facing today, remember that we are called to something greater and that this world is not our home. This broken, painful, earth is not our final destination. It’s temporary – and we thank God for that!

Focus on the eternal, on the things that come from God – love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5:22-23). When you set your mind on things above, it changes your perspective and you realize that joy comes more easily, no matter the circumstances.

Always be full of joy in the Lord. I say it again—rejoice! Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon.

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.

And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.

–Philippians 4:4-9

We love you, Tori, and we celebrate you today. We always will.

Three Years: Tori’s Resurrection Day

/ lesabrackbill / 1 Comment

It’s amazing that it has already been three years since our precious Tori entered the arms of Jesus.

Today could be a devastating, sad day. We could choose to dwell on what we “lost” that day, how our world changed, and that would be an acceptable way to spend the day given the circumstances. I mean, we did lose a child. The world would understand. But, as always, we choose to place our focus on where she is and how she is doing, as well as the fact that we will see her again someday and will never have to say goodbye.

Instead of the worldly form of grief, we choose peace.
Instead of blaming God, we choose faith.
Instead of tears, we choose joy.

We decided two years ago that we would always spend Tori’s Resurrection Day (also called Tori’s Day of Triumph) doing something fun as a family. The activities may vary from year to year, depending on the age of her siblings and their interests, but we want to always celebrate her life and her current/forever place of residence.

So, today we had breakfast at Cracker Barrel and had some fried apples (something she LOVED) together:

We went to see Tori’s tree at the Hershey Gardens for our second annual family photo in front of the tree:

We read “I Can Only Imagine: A Friendship with Jesus Now and Forever” to the boys – something we will do each year as we teach them about Tori, Heaven, and faith in Jesus.

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But most importantly, we enjoyed our time as a family:

I promise we aren’t perfect Christians, nor are we perfect people. We sought out the biblical examples of living after a loved one’s death, and we believe that this is how we are to live. The New Testament, especially, is FILLED with verses about death of fellow believers and how Christians should respond, and it’s always referenced with joy. With peace.

We trust that the God who created the universe can be trusted with every detail of our lives, even when we don’t understand the reasons. 

(If you’d like to hear me go more into depth about this and more, here’s a link to a speaking engagement I had in January. You can also read more in my book, Even So, Joy.)

One of the questions I ask in Even So, Joy is this: If we (as followers of Jesus) truly believe God and His promises, if we truly believe that Heaven is where we belong and where we will spend eternity, then why do we follow the world’s example and allow sorrow and grief to overcome us? It doesn’t have to be this way. 

Would anyone CHOOSE to lose a child? Absolutely not. And yet, we CAN choose our reaction and how we live our lives afterward. We see the example of David losing a child (albeit to very different circumstances) in 2 Samuel 12 and his response:

19 When David saw them whispering, he realized what had happened. “Is the child dead?” he asked.

“Yes,” they replied, “he is dead.”

20 Then David got up from the ground, washed himself, put on lotions,[b]and changed his clothes. He went to the Tabernacle and worshiped the Lord. After that, he returned to the palace and was served food and ate.

21 His advisers were amazed. “We don’t understand you,” they told him. “While the child was still living, you wept and refused to eat. But now that the child is dead, you have stopped your mourning and are eating again.”

22 David replied, “I fasted and wept while the child was alive, for I said, ‘Perhaps the Lord will be gracious to me and let the child live.’ 23 But why should I fast when he is dead? Can I bring him back again? I will go to him one day, but he cannot return to me.”

David got up. He worshiped the sovereign God he knew and trusted. He knew he would see his son again someday and chose to live life.

I think about it this way: If it were me that had died, I would NOT want my parents to stop living life. I would not want them to visit my grave (or, as we call it, Resurrection Site). I would want them to remember that the separation is not forever, that I am where we all, as Believers, are supposed to be. That I am finally HOME. 

Brennan and I chose then – and we choose now – to focus on Tori and how amazingly she is doing now. Tori can SMILE. Walk. Talk. Breathe. Play. Be with Jesus. How incredible is that?! Our precious baby girl was so broken here on earth; now she is healed and WHOLE. That is more than enough reason to rejoice!

Brennan and I know and believe that Heaven is real, that she is having an amazing time, and that we will join her someday. Every day is one day closer to that reunion!

You may not be in a situation like ours, but we all have our own challenges and life struggles. No matter what our circumstances, we each have a daily decision to make, a choice for how we view our journey; we have the opportunity to choose for it to be well with our souls and to focus on things above, not on earthly things (Colossians 3:2).

Every day, we each have a decision to make: where is your focus?