“She was abnormal from birth, you just didn’t know it.”

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.

As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️

Completely Different

I haven’t changed my phone wallpaper in almost two years.

My dad captured this moment only a couple of days before Tori went to Heaven and it’s the last non-selfie photo I have of me and her together. I have had no desire to change it because it’s comforting to me. I like that it’s always there, easy to find, and that it represents the deep trust she had in me.

I like that it’s the same photo day after day.

This pregnancy has been both similar and different to my pregnancy with Tori. In many ways, though it was still relatively easy, hers was more complicated.

Both pregnancies were/are easy in regards to no morning sickness, little discomfort, no swelling, etc. I do not take it for granted that my body seems to like pregnancy!

But there are some major differences:

  • I had gestational diabetes.
  • I had excess amniotic fluid (because of the GD).
  • I gained over 30 pounds.
  • My hips caused me pain constantly.
  • She would sleep through non-stress tests, triggering multiple ultrasounds each week.
  • I tried to deliver her naturally and ended up having an unplanned c-section.

When we found out that we were having identical twins (mono/di), we immediately assumed that we were in for a rough ride.

And, thus far, we’ve been completely wrong.

  • I passed my glucose test!
  • My fluid levels are normal.
  • I have only gained 20 pounds.
  • My hips only hurt while trying to sleep.
  • We will see about the non-stress tests, which start at 32 weeks 😉
  • Even though I have ultrasounds every other week, everything is going as smoothly as possible! No complications; good, steady growth; very active; healthy boys.
  • This c-section is scheduled, and I am happy about it this time!

I had prayed that God would let us have the easy road this time, and while we’re not in the clear until they are born, so far He has blessed us with a normal pregnancy, and we are beyond grateful. I needed this.

(25 weeks and 29 weeks)

We’ve begun to realize that everything about what’s going to happen in April is completely different than with Tori.

  • Boys, not a girl
  • Two, not one
  • No Krabbe, no genetic issues

And we need these differences, too.

Because it will be completely different, there will be less temptation to compare them to Tori. She has her place in our hearts and they will have theirs. ❤️

We have no reason to fear the future with the twins and yet we are going to be waiting…for the NBS results, for the 5/6 month mark (when Tori’s symptoms surfaced), for them to surpass her life of 19 months and 27 days. I think until we hit that mark we will wonder if the genetic testing was wrong, if the Newborn Screening was wrong, if things are going to be the same as they were with Tori.

The boys are going to learn to crawl, talk, walk, run, play…things we can’t even imagine because Tori was robbed of those opportunities. I can’t wait (and yet I can) until they are mobile and able to get away from us – something Tori never could.

Usually the status quo brings comfort; in this case, the differences are refreshing. And we need them.

I wonder what I will do and how I will feel when the boys are here in regards to my phone wallpaper. I imagine that will be an emotional moment, even if the new photo incorporates Tori in some way, because it will be a reminder that she is in Heaven and not here with her brothers.

But, as we move forward in our new adventure, we know that things are going to change, that change isn’t bad; that things are going to be new and wonderful, even if bittersweet, and we will learn to embrace the change and the joy that these precious boys will bring to our lives.

And we can’t wait. ❤️

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.


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. 


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.

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.


A Night to Breathe

Last year (right after Tori’s diagnosis), I was invited to attend a beautiful evening for mothers called “A Night to Breathe” and it was such a refreshing event. It was hosted by author Sarah Mae and her friend, Amy Smoker. Both women spoke and it was as if the Lord has given them words just for my heart.

I was so excited when I heard that they were going to have another event this year!

Then, snowpocalypse happened and the event was postponed until March 19th – when we were supposed to be in California.

Since our plans changed, I contacted Sarah to ask if there was still room for me, and she said yes!

It was a lovely evening at a hotel downtown. Everything was perfect – the decorations, the cupcakes, the company, the worship, and, of course, the wise speakers.

I wrote pages of notes, as usual, but here are the highlights that meant the most to me from each speaker:


When our approval is from God, we can believe we are exactly the mom our children need. We don’t have to keep up with other moms or compare our journeys.

Travel/live at the pace of your children. Slow down and don’t be too busy.


Your job isn’t to fix what’s inside of you; your job is to follow God’s gentle leading and allow Him to fix it.

God is GENTLE and KIND.

Be gentle to yourself.

Don’t have a bigger view of your sin than you do of God. He is much bigger!

I’m so thankful that I had this opportunity to attend and to rest and be refreshed.

Thank you, Sarah and Amy, for sharing your hearts with us this evening and for making it possible for all of us to just “be” this evening. ❤️

On Motherhood and the Future

Everyone told me that it would be different with my own kids, and I prayed that they were right because kids have never been my forte. Teens, yes. Babies and children, no.

But they were right. In the ten months we have had with Tori thus far, I have been continually amazed at the patience, grace, love, and devotion that flows so freely from me toward her. This isn’t boastful because I know it has nothing to do with me – it is all from Jesus. 

Motherhood fits me so much better than I ever dreamed and it has brought out the best in me (so far). Being at home every day to be a wife and mom is the most fulfilling thing I have ever done. I can’t imagine doing anything else full time…

…and now I daily face the prospect of not only losing my baby, but of never being a mother again.

Sure, we have options for parenthood. Five, to be exact. But none of them would allow us to keep Tori, to raise her here on earth.


The words of Alfred Lord Tennyson have wandered around in my mind ever since we received Tori’s diagnosis.

‘Tis better to have loved and lost

Than never to have loved at all.

            -Alfred Lord Tennyson

I have pondered his words over and over again…And I don’t know if I agree, at least not at this moment, in the middle of our journey with Krabbe.

If we indeed lose Tori and God takes her to Heaven to be with Him, I know our hearts will be broken because we will no longer have her here on earth.

To lose her will hurt more than we can begin to imagine right now.

Will the pain we experience then be worth the immense love we feel for her now? Will it be worth the joy she has brought to our lives?

I don’t know.

Have we changed because of her presence? Of course. Am I closer to Jesus because of knowing her? Absolutely.

But losing her here on earth will be incredibly difficult. 

Maybe it will be clearer after she is no longer with us, once we can celebrate her being with Jesus, free from Krabbe.

But this also applies to our questions about future children as well. The fear of going through something like this again is too much to bear at the moment. The fear of opening my heart again to another child is overpowering at times.

This is irrational because if she were healthy we would already be trying for the second baby – it isn’t like we are trying to replace her. But, for reasons I cannot yet fully name, most days I think I cannot handle having any more children if we lose Tori.

Fear is easy; hope is excruciating.

The easy thing to do would be to refrain from having (or obtaining through adoption) additional children. It would just be the two of us and we could do whatever we wanted. 

But we didn’t want it to just be the two of us; we wanted a family.

This may seem preemptive and premature to some,  but we aren’t exactly young parents and the clock is ticking. This is something we need God’s wisdom about sooner rather than later. 

Please pray for Brennan and me to be able to clearly discern God’s plan for our future in terms of having more children. 

Being a mother has been the best thing that I have ever done, and I pray desperately that I can raise Tori to be a  godly woman who can lead her siblings well. That is all I ask.