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. ❤️

Why We Don’t Visit Tori’s Grave

We’ve never written about this before, but I think it’s important.

Let me preface with this: we know many people do things differently than we do so there’s no judgment at all. Everyone needs to do what their hearts need for healing.

This may surprise some of you, but we don’t visit Tori’s burial site (resurrection site, as we like to call it).

We don’t decorate it, we don’t spend time there. In fact, the only times we’ve been there were to show out of town visitors where it is, as it’s difficult to give directions.

It’s been nearly two years since we’ve gone there, and the reason is likely not what you think.

We feel no need to go there because SHE ISN’T THERE. Her soul is in Heaven, and we don’t need to sit at her grave to be reminded of that.

We don’t decorate it for holidays or leave anything there because she isn’t there, she won’t know we did that, and it doesn’t feel necessary to us.

If you’ve read Even So, Joy you know that we believe that death isn’t something to be feared or held onto – it’s a temporary separation and we will be reunited again!

So, for us, it never even crosses our mind to go to where her broken, earthly body was buried. We’d rather focus on changing the world around us and choosing joy as her legacy.


Brennan and I don’t always feel free to express our perspective on how to deal with child loss because we seem to be the minority. We feel like we have to stay quiet because we are doing so well.

But, here’s our perspective:

If I consider this situation from a different angle, the way to live is obvious.

If I were the one in Heaven, how would I want my parents to live? Would I want them to stay in bed, crying every day, wasting their life away, or would I want them to LIVE an abundant life because that’s what I would be doing in Heaven?

I’d want them to LIVE. To have JOY because of the impact I had on their lives. I’d want them to celebrate my life, not dwell on my absence.

This is how we view our life now that Tori is in Heaven. Our joy doesn’t come from her absence – we have joy because she existed. Her death didn’t change me – her existence did.

Tori comes up in conversation daily, especially now that we see so much of her in her little brothers. We think about her all the time but those memories bring joy, not tears.

I don’t believe that our loved ones can see us from Heaven, but if they can I certainly wouldn’t want Tori to see us wasting this short life we’re given. I’d want her to see us making the most of it, joyfully, just like we would if she were with us.


Tori may not physically be here, but we don’t have to go to her grave to see evidence of her impact. We see it every day in her brothers, in our memories, and in the legacy she has.

As tragic and horrible as it is, I don’t believe that child loss has to derail our entire lives. Shape it, yes. Ruin it, no. It’s a choice that has to be made daily, and we choose to be joyful. ❤️


If you’d like to get a copy of “Even So, Joy: Our Journey through Heartbreak, Hope, and Triumph” you can do so here.

Going Viral

We were so blessed to have the amazing Erin Fortney Photography capture the birth of our twins because it has made me feel like I was more involved and actually present in the room after delivery.

One of the photos she posted garnered a great deal of attention, to all of our surprise:

We love the photo and what it represents, but we didn’t expect what happened next. We were amazed to be contacted by so many reporters regarding our story and it went viral.

They were enamored with Brennan’s persistence in doing skin-to-skin in the O.R. (which to us is interesting because it wasn’t a question in our minds that he should have that experience with the boys, as well) and we definitely talked about that, but we also recognized the potential for Krabbe awareness and made sure they focused on Tori and her story, as well as Newborn Screening. THIS is our true passion in life!

Here’s the current list of publications that have written about us:

Babble: https://www.babble.com/parenting/skin-to-skin-dad-twins-photo/

Motherly: https://www.mother.ly/news/viral-pictures-show-dad-doing-skin-to-skin-with-his-twin-babies-for-a-very-good-reason

Love What Matters: http://www.lovewhatmatters.com/six-weeks-later-she-was-handed-a-death-sentence-how-dads-amazing-skin-to-skin-contact-with-twins-helps-heal-family-after-devastating-loss/

Birth Becomes Her: https://www.facebook.com/56901132/posts/10100975465821040/

CafeMom: https://thestir.cafemom.com/parenting_news/212461/dad-skin-to-skin-rainbow-twins

People: https://people.com/human-interest/brennan-brackbill-skin-twin-sons-death-toddler/

The Epoch Times: https://m.theepochtimes.com/uplift/father-gives-his-newborn-twins-a-shirtless-hug-right-after-theyre-born_2544565.html

The Daily Mail: http://www.dailymail.co.uk/femail/article-5849873/Pictures-father-cuddling-newborn-twins-skin-skin-delivery-room.html

Huge thanks to Erin Fortney for this image and for the write-up on Birth Becomes Her that started it all ❤ :

Dad had requested skin-to-skin in the OR from the moment that he stepped foot in the hospital… he must have mentioned it a dozen times.

He + his wife were preparing to welcome twins in to the world after losing their first-born to Krabbe Leukodystrophy at the young age of 20 months.

Staff told him that it would be tough since he would have two babies and needed to be in a scrub suit over his clothes … So he promptly and without question explained that he had a large arm-span that was ready and waiting to hold his two boys and then took his shirt off and zipped up his scrubs announcing, ‘well then.. problem solved!’

This nurse made sure to advocate for him to all 24 other people in the OR that day — and personally made sure that his request was fulfilled.  – Erin Fortney

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. ❤️