Twenty-Three Weeks

Not long ago I opened the calendar app on my phone and counted the number of weeks between Tori’s birth and the onset of Krabbe. I was surprised to find that she became fully symptomatic at exactly twenty-three weeks. To the day.

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Last photo of Tori smiling, taken at age 22 weeks 6 days (January 6, 2015)

That’s how old the boys are today.

Our healthy, strong, Krabbe-free identical twin boys are the same age today as Tori was when a horrific disease began to steal everything from her – her smile, her laugh, her ability to swallow, and eventually her life.

Twenty-three weeks.

As I was typing this, I momentarily thought “I wish I would have known that she’d never smile again so I could have treasured it.” But my next thought was, “Hmmm…would I really want to know?”

So often we say that we would, but is it ever a good idea when it’s something we can’t change? I think in most instances we’d end up worrying so much about what was about to happen that we would be unable to be fully present. Instead, I will treasure the smiles she did have as well as the smiles from her brothers each day.


I have been asked many times if I think I have some degree of PTSD, and after considering the question, I can honestly answer no. Sure, there are things that will never be the same about me – or my parenting – after Tori (for instance, I definitely check to make sure the twins are breathing far more than I expected to do), but I most certainly do not have PTSD. Brennan would tell you the same. We are living in joy and peace.

And that leads me to wonder why.

Why are we okay when so many who’ve walked in our shoes aren’t okay?


I had a conversation with my chiropractor during my most recent visit and it helped me in unexpected ways.

She remarked that she has loved seeing how Brennan and I have walked through this journey with grace and joy (we take no credit for that), and she loves how we’ve chosen to live out our faith. Her encouraging words (and great adjustment) would have been enough, but the Lord chose to continue to speak through her.

I told her that I often wonder why Brennan and I seem to be set apart from so many who have lost children, how we seem to be handling it so differently than most, even than other believers.

It’s not that we never think or talk about Tori (quite the opposite). She’s very much a part of our home and we will make sure the boys know everything about their big sister. It’s not that we’ve “gotten over it” because you really don’t ever “get over it” when you’ve lost a child.

(Side note: who defines what that actually looks like? Who makes the rules? Not getting over it doesn’t have to mean crying all the time or living your life depressed. It simply means that you are never the same, but it has such an unnecessarily negative connotation. We will never “be over” losing Tori but we also choose to live the life we think she’d want us to live – she’s in Heaven, happy as can be, so why wouldn’t she want us to live in joy?)

I expressed to her that I feel sorry (not pity, but genuine sadness) for those who can’t move on, who cry daily, who can’t seem to find joy in their lives after a tragedy like child loss. I mentioned my blog post about not visiting Tori’s grave. That we’re different but I can’t figure out why. That I wonder if we’re “doing it wrong” because we’re genuinely doing well and so many around us aren’t.

And then she said this: “it’s because you don’t let it define you. It’s because you find your identity in something (someone!) greater.”

In that moment, it clicked. She is totally right.

It’s not my identity. I’m not a victim, and I’m not a martyr.

Yes, I lost a child. Yes, it was terrible.

And yet, losing Tori doesn’t define me.

Did it impact me? Of course. But that’s not what defines me. The love of God (and my love for Him) defines me and my life. His mercy and grace overwhelm me and fill me with abundant gratitude. His faithfulness reminds me that we will see Tori again in Heaven for an ETERNITY. In a perfect place. With perfect bodies. No Krabbe. Forever.

I could elaborate more, but I already did in Even So, Joy 😉

We all have to choose what defines us, and I choose to NOT be defined by child loss. ❤


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As I watch Tori’s brothers today, I am amazed at their strength, at their smiles, at their health. They are doing things that Tori was never physically able to do – before or after Krabbe – and each new achievement is worthy of celebration. Every milestone reached fills us with awe.

That’s why I wanted to count the weeks.

That’s why I wrote a note on the calendar to pay attention to their development at twenty-three weeks.

Not because of PTSD. Not because of grief.

But because I am so indescribably thankful for God’s blessings to us. For his faithfulness. For His love. For every smile that these precious boys display. Everything. I don’t deserve this abundant life He has given to me, but I will embrace it and praise Him for it.

Even so, it is well with my soul. ❤

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. ❤️

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. 

Our Birth Experience in Photos

In the exhaustion that accompanies newborn twins, I completely forgot to share our birth photos! We were so blessed to have Erin Fortney Photography present so that I didn’t miss a thing and she exceeded our expectations. Far exceeded.

If you live in Central Pennsylvania and are pregnant, please consider hiring a birth photographer – specifically Erin! – because these are moments you will treasure for a lifetime.

When you have a c-section you are surrounded by blue sheets and it feels like you aren’t able to experience the birth of your children fully. I felt like I missed the first hour of Tori’s life and we only have five or so pictures of what happened while I was on the operating table. Because of this, I didn’t want to miss any of the twins’ first moments, and Erin made that happen!

Here are some of our favorites – it was hard to choose but I couldn’t upload them ALL. 😊❤️ We are so thankful for Erin and cannot recommend her highly enough. And I promise I wasn’t asked to do this or paid for my opinions 😉 People like her are rare these days and I am so thankful that Tori brought us together. ❤

 

 

 

“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. ❤️