Reminders of Krabbe and Choosing to Be Joyful

There will always be reminders of Krabbe and its effects on Tori in the least expected places.

The other night, for instance, on The Good Doctor, they had a patient who was unable to smile because her cranial nerves were not working properly.

Just like Krabbe.

This is just one example, of course. These situations always catch us by surprise, and it’s hard to believe that even just four years ago something like this wouldn’t have phased us. We would have enjoyed the episode of the show but it wouldn’t have made us think about anything else.

When times like this happen, we have a choice: focus on what Krabbe stole from her – and us – with sadness, or focus on all that Heaven restored to her with joy.

And, as always, we choose joy.

Her smile was amazing, even though we only saw it for five months. I think we will appreciate her brothers’ smiles far more because of this. Each smile, each expression…such joy.

We remember her smile with such love and eagerly await seeing it again soon – but not yet ❤️

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’s Not About The Money

Cover_lNow that my book is available for pre-order, it feels slightly weird to promote it. I worked for nearly three years on this project, and yet I am hesitant to post about it.

Most of us are raised to be humble, to not ever come across as self-promoting or a braggart. We’ve somehow received the message that you can’t talk about the things you’ve done. The problem with this is that there’s a difference between arrogant bragging and joyful accomplishment. 

One of my favorite authors, Jon Acuff, has talked about this many times. To paraphrase him, if I don’t share about my book/work, WHO WILL? 

One of the aspects that makes it far easier to share about my book is this: I am making hardly anything off of it. Does that surprise you? Most authors make around 10-20% from the purchases of their books. Brennan and I will make less than $2 per book before taxes, AND we’re donating a portion of that $2 directly to Hunter’s Hope Foundation. 

For us, it’s not about the money – it’s about the mission.

The mission is to make Krabbe known by any means possible, to hopefully increase awareness and multiply the Newborn Screening states (currently only SIX screen), and to provide as much money to Hunter’s Hope Foundation as possible as they advocate for Newborn Screening and support leukodystrophy families.

And, of course, to tell Tori’s story in hopes of encouraging others.

That’s why I wrote this. 

It’s not about the money (though we wouldn’t complain, of course! 😉 ) – it’s about awareness.

So, if you’d like to purchase Even So, Joy you can do so directly through the publisher (for now) or through Amazon.

You may see me posting about this often, and that’s simply because of the algorithms of Facebook and other platforms. Some see all my posts, some see none. By posting often, I hope most will see it at least once!

Please help us spread the word and #MakeKrabbeKnown and leave book reviews on Amazon, Barnes & Noble, GoodReads, etc. once it’s available!

Use the hashtag #EvenSoJoy if you share on social media!

“Is This Your First?”

It’s inevitable lately: when meeting new people who don’t know about Tori, they will ask if this pregnancy is my first.

Since I recently started a new job it’s happening fairly often. The first few times took me by surprise and I had to think quickly about how to answer: I could be truthful and tell them about Tori, or I could be mostly truthful since this is my first TWIN pregnancy and just say yes to avoid the uncomfortable truth.

So far, I’ve opted to just tell the truth, short and sweet, and allow the potential awkwardness (from their end) to exist.  I look at it as an opportunity to tell others about Krabbe, about Tori’s amazing life, and about the faith that has sustained us.

In each instance, I recognize that I have a choice: I can be truthful with joy or I can be truthful with pain. I can embrace the joy we have found or I can be miserable. 

I continue to embrace joy. 

The title of my upcoming book is “Even So, Joy” which I derived from two sources: the song “It Is Well With My Soul” –

And Lord, haste the day when the 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.

and Habakkuk 3:17-19  –

Even though the fig trees have no blossoms,
    and there are no grapes on the vines;
even though the olive crop fails,
    and the fields lie empty and barren;
even though the flocks die in the fields,
    and the cattle barns are empty,
 yet I will rejoice in the Lord!
    I will be joyful in the God of my salvation!
 The Sovereign Lord is my strength!
    He makes me as surefooted as a deer,
    able to tread upon the heights.

The Bible makes it abundantly clear that things are going to be imperfect here on earth. Once sin entered the world, it was inevitable that life would be terrible at times. Things are going to go wrong, our hearts are going to hurt, and sometimes it will seem unbearable.

But, the Bible also makes it clear that it can still be well with our hearts and our souls no matter what comes our way because all of this is temporary. Imperfect life on this earth should make us desire the perfection of what’s to come in Heaven. 

For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! – 2 Cor. 4:17

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.  For you know that when your faith is tested, your endurance has a chance to grow. – James 1:2-3

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5

Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are.  Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay.  For we know that all creation has been groaning as in the pains of childbirth right up to the present time.  And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved. (If we already have something, we don’t need to hope for it. But if we look forward to something we don’t yet have, we must wait patiently and confidently.) – Romans 8:18-25 (emphasis mine)

Our God is a God who redeems. He is worthy of all our praise, even when circumstances don’t appear to be praiseworthy. He knows the full story while we only know this current chapter.

You have a choice to make daily just like me; though our circumstances may be different, I know your life isn’t going perfectly.

Joy is something to be chosen and embraced in the uncertain times, in the “even though” or “even if” moments. For it is then that our faith grows stronger and we are reminded of God’s love, and the least we can do is share it with those who need it the most.

Always be real and genuine, of course, but always be pointing others toward the hope and joy we have in Jesus. It has been said that light shines brightest in the darkness, and this has certainly been proven to be true in my life. Our decision to choose joy after losing a child stands in stark contrast to the way much of the world would react. And that’s kind of the point. We should be different as Christians in this world.

I will continue to be honest and share that the twins are actually child two and three for us, not our first. I will embrace the potential discomfort and awkwardness that the other person may feel and I will point them to the glory of the Lord and the hope and joy He brings.

Even so, it is well with my soul.

Book Review: “Blessed Are The Misfits” by Brant Hansen

Have you ever felt like you were alone, like you didn’t fit in? Have you ever wondered why so many people seem to have a different experience in church than you do?

You are not alone.

Brant Hansen, the radio personality and author of Unoffendable (another amazing book), has done it again. He has put into words what so many of us have felt but couldn’t express.

For years I felt like I was failing because I didn’t love evangelism. The thought of talking to strangers about Jesus felt like torture. I wondered if my faith was authentic. It wasn’t until a few years ago, when I discovered that I’m actually an introvert, that I realized it wasn’t that I didn’t want to talk to strangers about Jesus – I didn’t want to talk to strangers at ALL. 

And there is NOTHING wrong with that. Chapter Seven told me so (and the Bible, but still 😉 ).

Brant discusses many aspects of life in which people feel like misfits – things that no one has ever really discussed before. And I think you need to read it. You can order it here!

If you don’t feel like a misfit, maybe you know someone who does…so buy a copy or two to give as gifts. Someone you know needs to read this book, and I bet it’s you.

Pregnancy and Parenting After Loss

I’ve mentioned before that ever since Tori went to Heaven I’ve felt quiet, as though I have nothing to say. And so I’ve stayed quiet, not wanting to force the words just for the sake of writing.

Well, I finally feel as though I have something about which I can write.

Pregnancy and Parenting After Loss.

As the date for our embryo transfer draws nearer, I have so many thoughts and feelings running through my mind and heart. We will be pregnant soon! I honestly feel like I’m already “nesting” even though I’m not even pregnant yet. Brennan can attest to this, haha. Granted, that’s partially because we still haven’t really moved into our house yet and I’m ready to be SETTLED. But I digress. My heart longs to be pregnant, to have the hope of future children.

I just want to be a mother again, to hold and care for these precious babies who are currently frozen. 

But there’s a lingering fear that I can’t quite chase away – a fear that one or even both of the embryos won’t attach. That I will miscarry. That we will have two or three children in Heaven and not just one. There’s little reason to think this will happen, says my doctor. I’m healthy, fertile, and have no reason to believe that the embryos won’t attach. We’ve seen how God has moved mountains to make this even possible. So why are these fears so present?

I have a feeling that parenting any child after losing Tori is going to be a greater blessing than we can imagine and yet contain the potential for greater fear than we’ve ever had before. Any symptom that reminds me of Krabbe. If they have reflux like we thought Tori did. If they have any developmental delays. Anything like that will have the potential to throw me back into the pre-diagnosis days with Tori, wondering if the genetic testing was wrong. Wondering if they do have Krabbe. I have a feeling this will be a challenge to overcome.

I’m not one to be fearful, really ever. I trust the Lord and I believe that He has me in His hands. I believe that He is in control and that He knows exactly what will become of these precious frozen embryos. So I must surrender, moment by moment, any fear or doubts that creep into my mind, because I know that they aren’t from Him. 

I will continue to process my thoughts and emotions about all of this as we progress though pregnancy and parenthood after losing Tori. I pray that my transparency is a blessing to others and that the Lord will continue to work in and through our lives.

Please pray for our embryos – our son and our daughter: pray that they will survive the thaw, that they will attach to my uterus quickly, and that they will develop into healthy, thriving babies. September 1 is quickly approaching! 


Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!