I made myself a sandwich today and I actually got to eat it…

Probably the strangest blog post title I’ve ever had, but it’s worth celebrating. It may seem laughable to most, but for a mom of 11 week old twins this is a huge victory.

Life with twins is so joyful, but it is also the hardest thing (caring for Tori aside) I’ve ever done.

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Photo Credit: Erin Fortney Photography

To name a few things:

I’ve had to adjust every aspect of my life, including showering. I’ve always been a morning shower person, so showering in the evening when Brennan is home has been an unwelcome necessity, but the few times I have tried to shower during the day didn’t work out so well and one or both babies ended up crying. So I made an adjustment.

I am trying my best to eat well and eat consistently, but sometimes hours fly by while I’m occupied with the boys and I forget. So the fact that I was able to make a sandwich today and eat it is HUGE. I hope it’s a trend that continues. Breastfeeding twins is an adventure and requires so many calories (and so much water), so I need to be better about making sure I eat during the day.

Of course I’m tired – any mom of newborns is. But this twin thing is a whole new level. Until they sleep for long stretches (maybe soon, per the all knowing Google?), this is going to be my reality. Thankfully, I get to sleep most Friday and Saturday nights thanks to Brennan and the frozen breastmilk we have; that sleep gets me through Wednesday of each week, but by then I am longing for Friday evening to come because the exhaustion has returned.

The boys have chosen 3:30-5pm (ish) every day for their “witching hour” (their fussy time) so that makes me SO ready for Brennan to walk in that door to rescue me 😉 He has never felt so wanted, I’m sure! Haha. It’s so hard to comfort TWO babies who both have no idea what they actually require to calm down. 😉

I rarely leave the house and have yet to attempt to leave with both of them by myself. Someday it will happen, but for now we lay low and take it easy.

Each day is filled with opportunities for “mom guilt” because one baby is more needy than the other at the moment. So, I end up holding him more, all the while feeling badly that I am not giving equal time to the other. During those “double melt-down” times it’s a constant assessment of which baby needs me more, and which one I can calm down the quickest.

It will never be easy – it’s just reality of having twins: double the meltdowns, double the sleep exhaustion; but, it also means double the smiles, laughter, and joy.

It has been amazing to observe their personalities emerging, and to see how similar they are to their behavior in the womb. Isaiah is calmer, easier to settle down, and just overall more chill than his brother. Caleb is more vocal (both in quantity and in volume), more curious, more wiggly.

It has also been amazing to watch them grow and change, because with each day they resemble Tori more and more. That’s something for which I had prayed (and will blog about the “why” soon) and I love seeing her in them.

Both are so “nosy” now and are wanting to lift their heads to look at everything. They are strong and hold their heads up really well! We’re so proud of them and their desire to work at these things.

They both love the changing table now – as did Tori – and are SO talkative, happy, and smiley while we change them. We tend to linger there, interacting with them during these joy-filled moments.

Their smiles emerged around eight weeks and made this mama’s heart so full. Tori lost the ability to smile at five months due to Krabbe, so these smiles are worth more than I can express. I will NEVER take them for granted because I know what it’s like to not have them. ❤ I know what it’s like to have a child who cannot express any emotion, so I’ll take the fussiness and anger if it means I can have the smiles.

I am so thankful to be a twin mom, but I want to continue to be real about the challenges. I tend to only post the happy photos on Instagram and not the photos of the hard moments, but know that they exist.

And it’s okay. It’s all worth it. 

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 ❤️

Tori’s Day of Triumph – March 27th

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Next Tuesday is BIG – it’s the second anniversary of Tori’s “relocation” to Heaven and we have so many awesome things in store for her Day of Triumph/Triumph Day!

  • Lesa’s radio interview with Autumn Miles airs (3:30pm in Dallas (100.7 FM), but online as well)!
  • Tori’s Triumph” – the documentary by Blink Motion Productions – debuts online! We will post a YouTube link that day, or you can look for it (and watch the trailer) here.
  • Even So, Joy” book launch party in Hershey! 6:30-8:30pm at the Cafe on Cocoa (1130 Cocoa Avenue, Hershey), and we will go LIVE on Tori’s Facebook Page at 7:00pm during the Q&A portion of the launch!  
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    If you haven’t already purchased Tori’s story in book form, it’s on all major book websites (Amazon, Barnes & Noble, iBooks, CBD, etc.) and we will have copies at the launch party for purchase as well. 
    Lesa Brackbill, Author is my official Facebook author page if you want to follow it!

    We are going to celebrate that Tori has been Krabbe-free for TWO YEARS, that she has been able to laugh, smile, run, play, EVERYTHING she couldn’t do here on earth, and we hope that you will join us! ❤ And please help us spread the word – we’re fighting against social media algorithms and need your help!

Unexpected Emotions

I (finally) received my first copy of my published book today!

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As I held it in my hands I was overwhelmed by two emotions: joy and heartache. 

How fitting that the quote I chose for the back of the book talks about that very conflict.

I felt such joy at knowing that my hard work had paid off, that Tori’s story was finally being told in more depth than ever before, and that new people will learn about her and about Krabbe. I’m finding such unexpected joy in being able to say I’m an AUTHOR. 

But, then I was filled with sorrow because I never should have had to write this book in the first place. No one should lose their child, especially to a disease like Krabbe. I would do anything to have Tori back, healthy, running around like an almost-four-year-old would be doing. Anything.

I allowed myself to embrace the tears (likely also caused by pregnancy hormones 😉 ) for a few moments and then I reminded myself of what I know to be true: that all is well. And I focused on the joy that she brought to our lives, the knowledge that she is in Heaven and we will be with her soon (but not quite yet, as Jim Kelly likes to say), and on the fact that God is going to continue to use her – and us – to save lives as we fight on for Newborn Screening for Krabbe. 


As of now, my book is sitting at #1,336 overall on Amazon. That sounds far from #1, but it’s far higher than 8,000,000 (the number of books for sale on Amazon). It’s also the #1 new release in the Christian Families category. And we are blown away. While we don’t yet know how this translates into numbers of books sold, we’re humbled at these stats.

Numbers matter because Tori matters, because increased awareness is based on the number of people who know about Krabbe, and because numbers will generate revenue for us to donate to Hunter’s Hope. 

So, if you haven’t picked up a copy (or several), please do. It would mean so much to us.

Here’s the Amazon link!

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!