It Is Well

I have served as the worship leader at Transcend Church for a little over three months now. While I have led worship almost continually over the past 22 years in some capacity, this is the first time I have been “the leader” of a worship team instead of me just playing guitar and singing. This has certainly been a growing experience for me and I am so thankful for the members of the worship team and their talents and hearts for worship.

Few are aware of what goes into choosing a worship set – it’s far more than just picking songs you like. I typically read the Scripture for the upcoming sermon and prayerfully choose songs that go along with the sermon. Yet, sometimes it’s honestly just following the Holy Spirit’s guidance and how I “feel” about a particular song fitting in with the set.

This week was definitely a “feel” week as the passage did not easily lend itself to songs. While I was doing all of this, I considered that this Sunday was Mother’s Day but didn’t give it much thought.

As I leafed through my (gigantic) binder of music, a few jumped out at me, unrelated in theme at first glance – “Great Is Thy Faithfulness” would start the morning as a great reminder that God is trustworthy, merciful, and faithful. We’d do “Even Unto Death” and “Give Me Faith” to remind ourselves that the God we serve is worthy to be followed and trusted, no matter what. I chose a few other songs to fill in the set and thought I was done.

I grabbed my guitar and began playing through the set but it still didn’t feel complete. Later that afternoon the hymn “It Is Well With My Soul” – one of my favorites – came into my head and I knew that was what was missing. In addition, I decided to add Bethel’s song “It Is Well” to the end.

If you aren’t aware, the back story to the song “It Is Well” is one of the most powerful I’ve ever heard. Mr. Spafford lost his four daughters in a shipwreck, all at once. Four daughters. And yet, he penned the words to this poem (now song) and declared that it was well with his soul.

How can that be?

I contend that…

It can be well with your soul despite your grief. 

It can be well with your soul despite your circumstances. 

It can be well with your soul despite your questions and uncertainties of God’s actions. 

This can all be true because it isn’t dependent on you – it’s dependent on God. When you believe the truth of who God is (faithful, loving, merciful, kind, generous, good), when you believe His Word and His promises (there IS life after death for those who trust in Jesus!), and when you trust Him fully, there is peace within your soul that surpasses understanding (Phil. 4:7). We’ve lived it. We know this is true.

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We have a beautiful sign in our home that quotes this hymn, and it has been a great reminder to us as we’ve learned to live without Tori here on earth. We’ve truly learned that “whatever our lot” we can be at peace when we are trusting the Lord and following Him.


As I led worship this morning, the emotion of missing Tori began to well up inside as we sang the final verse of the hymn:

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul!

The emotion was two-fold: first, remembering the tragic circumstances that brought this song into this world and how deep the pain is when you lose a child; second, I long for this day – the day when Jesus returns and we are reunited with our precious Tori (and other loved ones who have gone before us). I cannot wait for that day and for the eternity with her that will follow.

I got through the song, but as the sermon began my eyes were teary as I pondered the joyous reunion that awaits us.


As the Bethel song by the same name says,

Through it all, through it all, my eyes are on you.
Through it all, through it all, it is well.
So let go, my soul, and trust in Him
The waves and wind still know His name.

The same Jesus who calmed the storm that threatened to wreck the ship He and His disciples were on is the same Jesus who lives today and loves us deeply. He is still in control, even when we can’t feel it.

Being well in your soul doesn’t mean that things are perfect, or that you pretend to not be in pain. It simply means that you trust Jesus more than you fear your circumstances.

Yes, my Tori is gone. Yes, my heart longs for her. Even so, it is well with my soul. 

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I don’t know why I was led to put the songs on the set list today that I did, but I know that, if nothing else, my own heart was encouraged by the words of these songs. Hopefully the Lord used them to speak to others, as well.

One Year…


Time is a funny thing. 

Our Tori has been a resident of Heaven for one year as of tomorrow (March 27). It’s surreal, to say the least, to think that we have lived one year without her in our arms. One year without watching her breathe, sleep, and struggle as Krabbe overtook her fragile body. One year since she was healed completely and made whole once again.

Why is it that today, the day before the one year anniversary of Tori’s Heaven-going, my heart feels so heavy? She was gone yesterday, she was gone two months ago; nothing has changed, but for some reason this milestone brings back emotion. This is a rhetorical question, of course. Time is strange in that it heals but it also reminds you of what you once had more strongly as it passes.

We’ve pondered how to spend March 27 for months now, and we came up with an idea last week to return to the Philly Zoo to feed giraffes. However, we won’t be able to do that until April 17, so tomorrow we will celebrate her Heaven-going anniversary by eating fried apples at Cracker Barrel (her favorite!) and remembering her with joy. 

We refuse to sit at home and be sad – that isn’t how we lived life with her and that will not be how we live life without her. We taught her to embrace life and choose to be joyful, and that’s what we will do tomorrow. We remember God’s faithfulness and perfect guidance the ten days before He called her home and are filled with gratitude. 

We miss our baby girl every moment of every day and we anxiously await our someday reunion in Heaven. But, for now, we will continue to live life with passion and joy, just like we did with her here. ❤

One Step at a Time

The hill from the employee parking lot to the building where I work is gigantic. It is long, steep, and, especially when it’s cold outside, the prospect of walking up to work is daunting. Most days I am spoiled because Brennan drops me off at the entrance and then goes to park the van; but, on days when our schedules do not match, I am left to climb the mountain. And I don’t want to do it most days.

The challenge is half psychological and half physical. I’m not in great shape – yet – so that’s part of it. But, when I look at the hill I also have to convince my brain that I can do it because it feels like I will never make it, like I will fail.

What I have found is this: if I focus on my feet and on taking one step at a time instead of looking up to the top of the hill, it is far less challenging. If I take it one step at a time, it’s not that bad! I make it to the top of the hill, a little out of breath, but I can do it. I succeed.


This analogy is a perfect one for our lives right now: we’re nearing the one year anniversary of Tori’s heaven-going; some days it seems like our hearts will never fully heal, that it will be forever before we are reunited with her again. We long to hold our baby girl and gaze into her beautiful eyes once more, and that time (and heaven) seems so far away.

But, when we take the journey one step at a time, focusing on the Lord and on one task at a time, it’s so much easier and we feel refreshed. We don’t feel overwhelmed or tired. We feel at peace and we know that we can take the next step. Why is it so hard to remember to do this?


Whatever your mountain might be today, focus on the next step, not on the entire climb. Allow the Lord to guide you and sustain you; He is faithful and will lead you well.

Give your burdens to the Lordand he will take care of you.
He will not permit the godly to slip and fall. – Psalm 55:22 (NLT)

Give all your worries and cares to God, for he cares about you. – 1 Peter 5:7 (NLT)

Stillness 

Perhaps it’s because I wrote furiously throughout the summer in order to finish my manuscript. Perhaps it’s because I now work outside the home and am forced to speak with guests continually throughout the day, using up my “daily word count” quickly. Perhaps it’s because, with Tori gone, my purpose for writing has changed and I still haven’t quite figured out what’s next.

Whatever the reason, I’ve been struggling to write lately. I haven’t felt inspired.

I want to write, I want to process life with my writing as I have always done. But, I’m simply unable to do so right now. It feels forced.

I rarely comment or post statuses on social media. I rarely blog. I think all the time and am constantly processing things; the difference is that I’ve been keeping it to myself instead of adding my words to a world in need of less noise.

I haven’t been doing this intentionally, but it has happened and I’ve been trying to figure out why. 

Perhaps it’s been my way of creating some stillness and peace in a world and a life so busy and chaotic.

Perhaps it’s simply a reflection of the peace my heart feels most days. 

Whatever the cause, I’m still here. We’re still here. Life is busy, mostly with good things, and we have some exciting things on the horizon. 

We’re preparing to move to downtown Hershey within the next month (!!) which will change so much about our lives – a drastically shortened commute time, becoming landlords, being part of a community that we’ve wanted to join for years, and being able to walk almost everywhere we need to go.

My friend, Jenn, and I are waiting for the official call that will start our LuLaRoe business and cannot wait to see what this venture brings! Brennan and I hope that this will help us fully fund our IVF and adoption expenses. You can check out our page here

Speaking of that, we hope to begin the IVF process (again) in the next month or so. We need $10,000 up front to start and we have raised $8,000! Praise the Lord! We cannot wait to be parents again. 

I am hoping that March will be the month for pitching my manuscript to publishers. 

We’re quickly approaching the one year anniversary of Tori’s heaven-going and aren’t sure how we will spend that day (March 27), but I’m pretty sure giraffes will be involved.

I’m hoping to find my voice once more and to write about life and seeing God work again. But, for now, I am being still (Psalm 46:10) and doing what I can to focus on the Lord and where He is leading. ❤ Good things are in store.

Saying Goodbye to 2016

Tori was physically part of our lives for parts of four years: 2013, 2014, 2015, 2016.

2017 will be the first year we will experience her absence, the first year we will have to say that she passed away “last year” and not this year.

We cannot stop time, nor would we want to do so. Every day that passes is a day closer to seeing our girl again in Heaven. Yet, at the same time, my heart aches as we enter a year she will never know, a year we are forced to experience without her.


2016 was a bittersweet year filled with transitions for us. To name a few:

  • Bitter: Tori went to Heaven;
    Sweet: She was healed from Krabbe.
  • Bitter: We sold our first home, the home Tori knew as her own;
    Sweet: We paid off Brennan’s student loan.
  • Bitter: I was left without a “job” as a mom, a role I treasured;
    Sweet: Finding a new position where I see Brennan and other friends daily.

While it is difficult to say goodbye to 2016, we are hopeful about 2017 and all that is on the horizon.

In 2017, we hope to:

  • Buy a house in Hershey (March) – can’t wait to tell THAT story!
  • Pay off the rest of Lesa’s student loan and be DEBT FREE
  • Publish my book (will pitch to publishers in Spring)
  • Save/raise enough money to do a round of IVF
  • Begin the adoption process
  • Host an encouraging event for those who have lost children
  • See PA make Newborn Screening for Krabbe mandatory for ALL babies
  • Succeed in raising funds for Hunter’s Hope through a pilot program
  • Plus many other smaller goals

Brennan and I both feel encouraged and we feel hopeful for 2017. The Lord has already opened doors that excite us (ones that we couldn’t even have dreamed up) and we know that He has great things in store for us.

Years will continue to pass without Tori here with us, so while this first one is the hardest, we recognize that the heartache will never fully go away. Instead of dwelling on what we cannot change, we choose joy and hope. We choose to continue to fight for Newborn Screening so that others will never know the pain we have known. We continue to be grateful for all the Lord has done in and through us, knowing that He isn’t finished yet.

As we enter 2017, we pray that the Lord will continue to guide us and show us the path He wants us to take. And we pray that for all of you, as well.

 

NBS Advisory Board Meeting, August 23, 2016

Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory screening panel (and maybe even after that, but we’ll see).

You can read about the April meeting – and some background about the purpose of the Advisory Panel – here.

You can read about the meeting with the Physician General in June here.

This meeting was uneventful compared to April and Krabbe wasn’t even on the agenda for discussion. Dr. Levine, the Physician General of Pennsylvania, was in attendance for the beginning of the meeting and her presence seems to have had an effect on the panel given the tone of the discussion. 🙂

Positives:

  • Testing for X-ALD will begin on April 1, 2017 and testing for MPS-I will begin on January 1, 2017. Both of these are lysosomal storage disorders (LSDs) just like Krabbe. There are funding issues being worked out at the moment, but the panel is hopeful that these implementation dates will remain in place.
  • Testing for Pompe has been in place for six months; they have already identified eight positive cases.
  • The panel will be submitting a “Program Revision Request” to fund these two new tests AND will include the future of NBS in the proposal as more diseases (Krabbe?!) will be added in the future.
  • The Department of Health has created a new brochure about Newborn Screening to better educate new moms and dads about what is available in Pennsylvania and how it works. It will be visible on their website in a couple of weeks.
  • The panel is hoping to merge the two panel system that currently exists in Pennsylvania, which would make ALL of the testing mandatory and not optional for each hospital (meaning that all babies would finally be screened equally and your zip code won’t determine life or death!). Currently, only seven diseases are mandated in Pennsylvania; the rest, including Krabbe, are on a “follow-up” panel and each hospital chooses which diseases from that list will be included on their screenings. Ridiculous, I know. Thankfully, they all see that it’s ridiculous, as well.

Since Krabbe wasn’t mentioned in the first half, I made a point to talk to a few specific people during lunch to find out what I wanted to know:

  • According to PerkinElmer – the lab through which all of the testing is done – Hershey Medical Center is STILL the only hospital in the entire state testing every baby for Krabbe and for the other five lysosomal storage disorders (LSDs) in Hannah’s Law (Act 148 of 2014).
  • I verified YET AGAIN that if a mother asks for her child to be screened for Krabbe in a Pennsylvania hospital (or birthing center), the hospital has to do it.
  • PerkinElmer said that only a handful of requests for Krabbe testing have come through, which shows a great need for education until the testing is mandatory.

During the “public comment” section at the end of the meeting, I was able to address the issue of hospitals telling their patients that their babies were being screened for Krabbe automatically, and the panel was genuinely alarmed that this is happening. This launched a discussion about how they can improve the communication and education because it’s a serious problem and is also opening up hospitals (and the state) to law suits.

ONLY Penn State Hershey Medical Center is automatically testing for Krabbe in Pennsylvania, BUT, if you ask your hospital then they have to screen your newborn for Krabbe. Ask to speak to the Newborn Screening Coordinator at the hospital as they should be aware of this. If not, make them aware 😉

We found out that they are going to give the new brochure about NBS to the moms after birth along with everything else they give them, and Ashley (from Rep. Cruz’s office) and I both remarked that there has to be a better time, perhaps during prenatal appointments? Neither of us remember much of anything after our babies were born. That is NOT the time to give the mom a stack of papers, with this brochure included, and expect them to read and make these important screening decisions! The men agreed after we brought it up 🙂

In regards to Krabbe specifically: I asked Dr. Vockley if the conversation he had with Dr. Kurtzberg in July had affected anything (they spoke about her research and she schooled him, basically); he stated that until something is published, nothing will change. We know that Dr. Kurtzberg has submitted data for publishing, so now we just wait. Once that data comes out, it sounds like having Krabbe moved to the Mandatory Panel could happen quickly. Maybe.

Afterward, Rep. Cruz’s staff (Ashley and Rachel) and I spoke with Dr. Vockley for quite a while regarding Krabbe and Newborn Screening, and, overall, he was FAR more positive (and respectful) this time than he was three months ago. I believe that his conversation with Dr. Kurtzberg has shown him that there is MERIT in screening for Krabbe at birth; that the transplants are successful; that it’s WORTH IT.

He mentioned again the lack of data about the success of NBS and transplants for Krabbe; so, I pointed out to him that since only FOUR states are screening, it’s no wonder that we have no data! If you aren’t screening at birth, you aren’t catching it early enough to transplant, therefore, no data. He surprisingly agreed with me. I then added that, since Pennsylvania has such a high rate of leukodystrophies, WE could be the state providing that data and making headway in research. And he agreed with me there, too!

In summary, there have been no changes, no possible implementation dates, BUT, overall the attitude toward NBS screening HAS seemingly changed, and we feel hopeful that it won’t be long before every single baby in Pennsylvania is given a chance at life because of NBS.

If you read all of this, thank you. 🙂 Please spread the word to other Pennsylvanians so that every new mom is aware of the options for Newborn Screening! No matter what state you live in, you can write letters to your legislators HERE and let them know that this is important to you!

September is Krabbe/Leukodystrophy Awareness Month AND Newborn Screening Awareness Month. Let’s do our part to educate!

 

Busy Summer and a Much Needed Update

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.