Expectations and Grace

I had one of those “I feel like I’m failing” moments yesterday when both babies were fussy (most of the day) and I couldn’t figure out what they needed.

All parents have these moments where we feel like we have no idea what we’re doing. It’s a normal part of this journey.

While I try to not fall into the comparison trap, it happens, especially in those areas in which I am the least confident. It’s SO easy to see another mom with her children (whether online or in person) and compare your performance to hers, making yourself feel disappointed and like a failure. When it comes to social media, it’s likely more “performance” than reality, anyway!

When I finally got them to nap, I had a chance to think. How many of these self-imposed expectations are actually relevant to the care of my babies and how many of them are merely an effort to measure up to my perception of what the perfect mother looks like?

And I realized something important: my babies don’t think that I’m a failure, that I don’t know what I am doing most days.

To them, my presence is enough. I walk into a room and (most of the time) they smile wide. They are thrilled just to be in my arms. So why do I compare myself to unfair, self-imposed ideals and expectations?

They don’t compare like we do because they have NO idea what other moms do. I am the only mother they know! If I were actually failing, they would have absolutely no idea. Therefore, there is no way for them to be disappointed (until much later 😉) in me.

Isn’t that freeing?

My babies delight in me. They love me. And their opinion (meaning what brings them joy, security, and comfort) should be the only one that matters (God and my husband aside) when it comes to parenting them as infants.

THANKFULLY they don’t have social media to show them what other moms are doing with their infants, and I need to remember that. And maybe I need to reduce my social media consumption on days when I’m feeling like that.

This realization is the first of many reminders throughout my life to show grace to myself during these (sometimes difficult) days of infancy with twins. And toddlerhood. And childhood.

After all, their joy is what matters right now, not my comparison to what I think others are doing. ❤️

The What or The Who (Not the Band)

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.

So, We Missed a Wedding Today

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

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

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

We were going to miss the wedding.

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

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

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

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

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

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

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

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

My Third Mother’s Day

I have never been one to embrace or become attached to holidays like Valentine’s Day or the other “Hallmark Holidays” like Mother’s Day, primarily because I have been taught to celebrate these things daily, not once every year.

Even though I’ve been a mother the past three years (pregnant, present, absent), it’s just another day to me. I’m also a rebel and don’t like being told what to do. 😉 But mostly it’s because I love cherishing the family I have been given continually and not just because we are told to do so by “someone.”

I’ve also been taught to not focus on what you are lacking, but rather to focus on what you have, to appreciate all that you have been given and not dwell on what has been taken away. Paul phrased it as “being content” no matter the circumstances (Phil. 4:11).

So, while this is probably supposed to be a sad day for me because my Tori is in Heaven and not in my arms, it truly isn’t. ❤

As I have mentioned many times before, the discipline of gratitude has had a profound impact on my life. When you make a point to be grateful for things and to name those things out loud (or in writing), it is much more difficult to be negative and sad. God is always at work in our lives and recognizing His hand makes life abundantly joyful, even in the midst of heartache.

So, today – as always – I focus on my blessings:

I am SO thankful to have been chosen to be Tori’s mama and to have had those beautiful twenty months with her. Those beautiful and wise eyes of hers spoke volumes when her mouth couldn’t: I know she loved me and I know she knew she was loved.

Her existence taught me so much and her brief presence on earth has made me such a better person. I am more loving, more patient, more gracious, more kind, more GRATEFUL, more selfless, more like Jesus (which should be every believer’s goal). She was a miracle child in so many ways, and I’m so grateful.

I will always be Tori’s mama! I pray that the changes I see in myself because of her are not only temporary but rather that they continue to change me to be more like Jesus.

I’m thankful to be here in California with my mother and my grandmothers today to celebrate them in person. I wouldn’t be who I am today if it weren’t for these women, for their example and training, for their love. They taught me to be a mother by living it out so well in their own lives with my parents.

These three women – Pat, Ruth, and DeAnne – loved me enough to discipline me and teach me while I was young because they knew that it was vitally important for my well-being. They also taught me valuable skills and I can never repay them for all they have done for me, except by carrying on this tradition of selfless love with my own children.

My mom, in particular, showed me what selfless love looked like over and over again during Tori’s earthly life. She spent weeks with us, helping doing things around the house, cooking meals, and, of course, cuddling with Tori. She has always put other before herself and is such an example to all. She continued to do what she could from across the country to make our lives a little easier even though she couldn’t be physically present every day.

She is an amazing grandmother and I hope that she will have the honor of being a grandmother again someday.

So, on this Mother’s Day, I am grateful for my heritage and the examples of motherhood in my life. I wouldn’t be the mother I was to Tori if it weren’t for these women. ❤ It’s a day of joy, not of sorrow, and we will continue to focus on what we have been given.

 

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!)