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)

Book Review: You Carried Me

book cover for You Carried MeWhen I was given the opportunity to review this book, I jumped at the chance, and I’m so glad that I did.

You Carried Me by Melissa Ohden is the incredible story of an abortion survivor and her quest to find answers. She learned about her almost-tragic beginning from her adoptive family and she writes openly and honestly about how she processed this information and how she has used it to encourage other women along the way.

You can see an interview with her here.

I read the entire book in one sitting because I was so drawn in and touched by her life. I highly encourage you to pick up a copy and read it – AND, share it with someone who might need the encouragement that this book provides.

I received a review copy of this book from the publisher; all opinions are my own.

A Season of Waiting

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. ❤

Removing the Sting of Death, Part One

Disclaimer: As with anything I write, I write with the understanding that we all process death and grieving differently – even as believers – and this is not a judgment or a criticism of anyone who handles these things differently. I write about my own beliefs and understanding of death given the hope that Jesus brings to us all, and I write about how this is playing out in my own life in hopes that it might encourage others in their own journeys. 

I have broken this into three posts because of the length. Stay tuned for part two!


Then, when our dying bodies have been transformed into bodies
that will never die, this Scripture will be fulfilled:

“Death is swallowed up in victory.
O death, where is your victory?
O death, where is your sting?”

1 Corinthians 15:54-55 NLT

My grandfather, Papa Fay, passed away last June after a long battle with Alzheimer’s Disease. He was the first (and only, thus far) grandparent I had lost – something I do not take for granted. His death taught me so much and, though I didn’t recognize it at the time, it prepared me for Tori’s passing nine months later.

We watched him decline as the horrible disease overtook his faculties and we prayed for years that the Lord would take him home so that he wouldn’t suffer any longer on this earth. When he went to Heaven on June 10, 2015 he was no longer the man any of us had known and loved – he was merely a shell, a body.

His death brought us joy because we knew for certain that he had a relationship with Jesus and that He was now present with the Lord in Heaven. He could visit with people (his favorite thing to do, a joy that the disease robbed from him as time passed), he could walk, sing, dance, and express himself. He was FREE from the chains of Alzheimer’s Disease at last, and we know that we will one day be reunited with him for eternity. What hope and joy that knowledge brings!

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As we watched Tori decline and saw Krabbe taking a strong hold of her precious little body, this experience with Papa Fay brought me such comfort. She was no longer the baby we once had and her brain was gradually losing the ability to function well. If God wasn’t going to heal her here on earth, we were comforted by the knowledge that He would heal her in Heaven.

After all, God’s Word tells us this about Heaven:

He will wipe every tear from their eyes, and there will be no more death
or sorrow or crying or pain. All these things are gone forever.
– Revelation 21:4

When we – as followers of Jesus – are living with Eternity in mind, our earthly perspective on death should shift from sorrow to joy. 

How is this possible?

We all know that death is inevitable – Scripture (and life experience) make that clear.

For everything there is a season, a time for every activity under heaven.
A time to be born and a time to die. – Ecclesiastes 3:1-2a

And I know you are sending me to my death— the destination of all who live.
– Job 30:23

None of us can hold back our spirit from departing.
None of us has the power to prevent the day of our death. – Ecclesiastes 8:8

BUT, we also know that this earth isn’t our home, it isn’t where we belong.

Death is NOT the end of our existence.

We are only here for a short time, to form a relationship with God and to preach the Gospel to all so that all might be saved through Him. We are here to prepare for eternity.

None of us are guaranteed tomorrow:

Look here, you who say, “Today or tomorrow we are going to a certain town and will stay there a year. We will do business there and make a profit.”
How do you know what your life will be like tomorrow?
Your life is like the morning fog—it’s here a little while, then it’s gone.
What you ought to say is, “If the Lord wants us to, we will live and do this or that.”
– James 4:13-15

Don’t brag about tomorrow,
    since you don’t know what the day will bring.
– Proverbs 27:1

Since we aren’t going to live on this earth forever, why do we allow ourselves to become so sad when our loved ones who knew Jesus depart for Heaven?

To be continued…

The Discipline of Gratitude 

I was taught a lesson (a discipline, really) during my senior year of high school that has had a profound impact on my daily life: the discipline of gratitude.

A wise woman in my church (named Vicki Allwardt) handpicked a few of us to mentor and disciple; our journey formally began on January 1, 2001 and ended when we all left for college, but I have never forgotten the wisdom that was conveyed.

She handed us all journals and asked us to write at least three things each day for which we were thankful.

 

 

 

 

 

 

 

She included verses on colorful paper about thankfulness at the front of the journal.

I faithfully wrote in mine that year and sporadically the next. The entries are amusing at first, giving insight into my eighteen year old mind (I was very thankful for boys 😉 ), but a gradual shift can be seen as I fine-tuned this discipline of gratitude.

Looking back, it isn’t the specific things for which I was thankful that had an impact: it’s that I was taught to recognize God’s hand in my life in such a simple, yet incredible, discipline.

Now, fifteen years later, I am a thankful person most of the time and I don’t even have to purposely try to think of things for which to be thankful. It’s part of who I am.

Gratefulness naturally flows out of my heart because I have trained my heart to be thankful in ALL circumstances.

This goes beyond optimism. This goes beyond happiness. This is a form of worship because you are continually recognizing God’s presence and His faithfulness all around you.

 


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.[a]

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 NLT

This passage from Philippians contains SO much wisdom about how to live life, but I want to focus on these three things:

  • ALWAYS be joyful. We are commanded to be joy-filled (remember, joy isn’t happiness) at all times, in all circumstances (v.6).
  • Prayer – including thanking God for what He has done – will be followed by God’s peace (v. 7).
  • Focusing on things that are good, true, and pure (in other words, God’s character traits), and continuing to try each day to live as Christ did will bring peace (v.8).

Joy + gratitude + Godward focus = peace.


As I started to write this post I did some quick research and found a couple of great articles about this discipline, and you can read them here and here.

The first article mentions suffering and why we should be grateful even during those times:

Ingesting life’s difficulties and tragic events can be overwhelming. Having a heart of gratitude, therefore, is not about looking at the bright side of things. And it’s not even acknowledging that things could be worse. Our thankfulness is never to be based on a set of circumstances. It’s based on a Person…

…Practicing gratitude rests soundly in the assuredness that God will ultimately redeem every horrible situation in this life or the next. “He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away” (Revelation 21:4).

I loved this quote from the second article:

“When we discipline our hearts and our lives to see that all is grace we are filled with an overwhelming sense of gratitude for everything.” – Sam Luce

When you are grateful, you are more likely to be:

  • humble
  • joyful
  • generous with what you have been given
  • content with what you have been given
  • focused on God and His sovereignty
  • at peace

This discipline of gratitude is why Brennan and I can be so overwhelmed by God’s goodness and grace even though He allowed Tori to have Krabbe…even though He took her to Heaven at such a young age…

“…even so, it is well with my soul.”

“Your grace has overwhelmed my brokenness…”
– Hillsong

We have learned to focus on all the good He did in our lives and in the world through Tori instead of on her earthly absence.

We have learned to praise Him for the time we had with her, for the memories we made, rather than all that we won’t experience with her.

After all, what good does it do to dwell on the things we cannot change?

We are not perfect, we don’t live this out perfectly, and there is certainly nothing wrong with mourning the loss of her and the life she could have lived. We did that frequently while she was with us, mostly in unexpected moments, and I know that we will grieve her absence at times throughout our earthly lives.

But, the discipline of gratitude has brought us such peace even in the midst of a parent’s worst nightmare, because we are focused on the truth of who God is – a loving, gracious Father who loves us more than we can fathom, and who works all things for our good. He is a Redeemer, and He will redeem all of this someway, somehow. 

For now, we thank Him for all that He has done and praise Him for He is worthy to be praised.


Six years ago I had the privilege of going to São Paulo, Brazil, to observe and serve alongside missionaries there. One conversation starter they often use is this: Where did you see God this week?

It doesn’t require a super-spiritual answer. Wherever you see goodness, joy, grace, kindness, love, peace, etc. (Galatians 5:22-23) you are seeing God at work.

God IS love, and He is kind, gracious, and just, so whenever you see those things in the world, you are getting a glimpse of His character, and it gives you fresh reasons to be grateful.

We’d like to encourage you to cultivate the discipline of gratitude in your own life, in all circumstances. Look for God at work all around you and write a few things down each day. You won’t regret it.

Unexpected: Our First Year Post-Diagnosis

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.

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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. ❤

 

Maintaining Your Marriage in the Midst of Suffering

Marriage experts will tell you that it is vitally important to maintain your marriage during the child-raising years because one day it will be just the two of you again. One day you will need to know how to live with each other and love each other without your children around.

Brennan and I have been learning day by day how to maintain our marriage in light of the fact that it might be the two of us once again sooner than we ever imagined.

We’re only ten months into this journey of having a terminally-ill baby, but we have learned so much already about how to focus on our marriage and each other in spite of the constant care Tori requires.

Are we perfect? Nope. We fail daily. But, it is through those failures that we have learned many lessons, and we have grown stronger and closer together.

We share these lessons in hopes that it will encourage someone else who is walking a similar path. Many of these we learned by observing other couples and we are so thankful for their wisdom.

These are all things that you should do as a couple under normal circumstances, but when you are subjected to a tragedy or other stressful season, it is even MORE important to be purposeful about these things.

So, how are we caring for our marriage?

1 – We established from the beginning that this would NOT break our marriage.

The evening of January 30, 2015, as we sat in the ER awaiting results from Tori’s CT scan, I looked at Brennan and whispered, “We won’t let this break us.” He readily agreed. We made a decision before she was even diagnosed to not let the enemy use this to break us apart. It was like a vow renewal in a few simple words.

We make the daily choice to walk through this together, because we promised to do so from the beginning. For better or for worse, for richer or for poorer, in sickness and in health. We believe these vows don’t only apply to the two of us: they apply to our children as well.

We had our first child together and now we are losing her together. Together.

You don’t make marriage vows because it’s a romantic thing to do; you make them because life is hard, times can get tough, and the promise you made is a constant reminder that you are in this together. You promised.

2 – We communicate openly, honestly, and freely throughout this journey.

This has affected Brennan and I differently, so it has been very important to be real at all times. If we are having an emotional moment, we talk about it. If we are struggling with some aspect of our situation, we talk about it.

There’s no reason to hide our emotions in light of all that we’re dealing with, yet we know that is a temptation for many couples. It’s easier to just put our feelings aside and ignore them.

Every day we are faced with the reality that our daughter is dying, and it isn’t something we ignore. We acknowledge the situation and work through the process of grief together as much as we can.

3 – We try to apologize quickly when our emotions speak for us.

When you are losing a child, the grief begins at the moment of diagnosis. At least it did for us.

We have found that there are often underlying emotions that shape our tone of voice and our words without us realizing it at first.

Therefore, we do our best to analyze our feelings to find the root cause, because, more often than not, it is our grief that caused the outburst of emotion, not what the other person said or did.

4 – We forgive each other freely and offer abundant grace.

Grace is probably the most important element of any relationship, but especially for situations like ours.

Offer it freely. Remember that you are both dealing with the most traumatic situation you have ever dealt with and it is new territory.

5 – We are creative with our time to ensure that we still “date” even when we can’t leave the house.

We don’t get date nights. Until we have nursing help, there is simply no one comfortable with watching Tori because of the need to suction her frequently.

Right now we rarely even get to sleep in the same bed because if we did we would both be exhausted all the time. Tori simply doesn’t sleep well. Because she has to be close to us (suctioning), she sleeps on one half of the bed and one of us sleeps on the other half. The other person sleeps upstairs so that they can get some rest. This is our reality right now and we make the most of it.

So, in order to still “date” each other, we found a show we watch weekly together and laugh together as we enjoy it. We take advantage of Tori’s typical evening nap and we eat dinner together and spend quality time together.

It isn’t about quantity in this season – it’s about the quality.

6 – We allow the primary caretaker to have some alone time whenever possible – and we take care of the caregiver.

I care for Tori about eighteen hours every day by myself, and I definitely need opportunities to get out of the house. Running errands – which I previously didn’t care to do – has become such a joy for me because I am able to do things by myself, things that otherwise get neglected.

I drive when we go anywhere as a family and Brennan sits in the back to care for Tori. I drive for UBER some nights, which also brings in some extra money. All of these things allow me some time away from being a caretaker while still doing things that are productive and beneficial for our family.

As an introvert, this alone time recharges me and allows me to be the best possible caretaker and mother for Tori that I can be.

Brennan also does his best to do things to take care of me, as we realized that I wasn’t feeling cared for – by no fault of his own! Because my entire life is spent caring for Tori and for him, it has been important to have him do little unexpected things to care for me as well – things like making chiropractor appointments for me. These little things help ensure that I am taken care of in the midst of our crazy life.


As we continue along on this undesired path, we will continue to learn more about ourselves, our marriage, and how to make it even stronger. We will share those lessons along the way because we want to help others as much as we can through their own tough situations.

Every day we choose joy and love instead of sadness and irritation. We choose to be a team instead of individuals. We honor the vows we made before God, family, and friends. And we find reasons to be thankful even when it would be easier to complain.

Our marriage is not only going to survive this tragedy, but it is going to thrive because of our purposeful care of our relationship in the middle of all of this. And yours can, too.

(This post was also featured on The Mighty!)