Three Weeks!

When we found out we were having identical twins, I knew we were in for an adventure. I expected being exhausted, overwhelmed, and outnumbered; and yet, I had no idea just how much I could love these tiny humans. It feels like my heart will explode with hope, love, joy, and gratitude for these precious babies with whom the Lord has blessed us. ❤️

Today these handsome little men are three weeks old, and I can honestly say that it hasn’t been a blur. Thanks to my parents being here and helping – even during the night shift – I truly feel like I have been able to cherish each moment and not feel like time is flying by without my permission. Their month (plus) visit will end in two weeks and their absence will be strongly felt. And I will be much more tired 😉 For now, I’m taking full advantage of their presence and resting when I can.

My recovery has been as easy as with Tori – only the first four days were rough. I’m very thankful that both c-sections have been uneventful! I’m already back at pre-pregnancy weight since I was all baby, and I’m also thankful for that.


Though they are identical twins, Isaiah and Caleb have distinct differences – both in appearance and personality – and so many of the differences were observed even in the womb! We have found it relatively easy to tell them apart, thankfully.

Isaiah (baby A) is relaxed and “chill” most of the time – as he was in the womb. Easy going describes him to a tee, even when eating. He is sweet and patient and loves to snuggle.

Isaiah currently weighs 6lb 14oz and is 19.4 in long.


Caleb (baby B) is our feisty one – especially while eating! He is passionate about his food. He was the very active and particular one in the womb, constantly avoiding the monitors and kicking his brother, and that has certainly remained true (minus the kicking his brother part)!

Caleb currently weighs 6lbs 9.5oz and is 18.9in long. No, he didn’t shrink – we were originally told the wrong length at birth; he was 18 inches long.


The best part of their pediatrician visit yesterday was seeing their Newborn Screeing results and confirming that they are indeed KRABBE FREE. Seeing the words “within normal limits” almost brought me to tears, even though we knew they didn’t even carry the mutation. That confirmation means the world to us. ❤


They still don’t really acknowledge the other’s existence, something we find so funny. The twin bond seems to be delayed, haha. At least these amazing photos (by Mary Ramirez Photography) make it look like they love each other ;)s


(We were SO blessed to have the amazing Erin Fortney Photography capture my pregnancy, their birth (which deserves its own blog post), and their second day of life, and Mary Ramirez Photography captured their precious newborn stage so beautifully (photos above). Both ladies knew our story and offered their services as a tribute to Tori and to bless our family as we welcomed our “rainbow babies” into this world. We cannot recommend their services enough!)



Similarities:

They both LOVE to grunt and make noises in their sleep (and while awake) and it’s so funny. Sometimes it’s like they are communicating with each other while asleep. They are both great sleepers and wake up every three hours or so (you can count on Caleb waking up every three on the dot to eat!). We can’t wait until they are awake more so that we can have some fun.

They both make the same noise when they have to sneeze and it goes away – something that will be nearly impossible to capture on video, unfortunately, but it’s adorable.

They are both SO strong and can roll over on their side, mostly when mad 😉 They have decent head control already, too! We tried tummy time but that wasn’t a success – they both used their legs to basically crawl off of the pillow that was supporting them! Already!

They both LOVE their hands and arms and, though they don’t have great control over them yet, love to have them by their faces.

I’m sure we’ve observed more similarities, but I can’t remember right now 😉


Sure, we appreciate the newborn stage, and we don’t want to rush their development; but, there’s one thing for which we anxiously await: intentional smiles. Smiling is something Tori lost the ability to do at five months due to Krabbe affecting the cranial nerves, and it was heartbreaking. Right now they smile in their sleep, but I long for the first intentional smiles to happen. I can’t wait until my presence can evoke smiles and laughter and joy – right now I’m comfort and food…mostly just food 😉

Joy doesn’t begin to describe our life right now. We are so blessed by these precious babies and we know that our journey with Tori has only magnified our joy. We can’t wait to tell them all about her. ❤

Even When Plans Fail, There’s Joy…

This entire book process has made us laugh so many times because nothing has gone as expected.

But, our launch party was going to be smooth and perfect! The plans were set and everything was going to happen as we expected…

Or not 😉

When we arrived at the venue, no one was there to open it for us. We waited and waited, tried to contact the owners (who are out of town and this isn’t their fault at all!). It was cold and rainy, but we thought we could just do it in the courtyard outside the cafe.

Brennan’s sister, Kelly, had the idea to go around the corner to the movie theatre (CocoaPlex) to see if they could help, and they said we could set up in the lobby! 🍿 🎥 So we made a note (thanks, Gina!), moved our party over there, and had a great time! We had wanted a unique venue, and how much more unique can you get than the lobby of a movie theatre?! 😉 And, it was FREE, so we appreciated that!

We just happened to have a table in our van that worked well for signing books, and the bench in the lobby made a perfect display area.

As my book says many times, joy is a CHOICE, and tonight we chose to roll with the unexpected and make the most out of the evening…and it was GREAT. ❤

Thanks to all who came out to celebrate with us! Thanks to Karen for the amazing cupcakes! And huge thanks to CocoaPlex for allowing us to use your lobby!

 

 

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 ❤️

“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’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.