One of my favorite traditions as a child was cutting down our own Christmas tree. I have such great memories of getting our permit for a tree in the mountains … Continue reading Isaiah & Caleb’s Adventure List: Christmas Tree
I’m slowly catching up on posting their adventures – you can see the list here! I had the opportunity to take the boys to a pumpkin patch in October with … Continue reading Isaiah & Caleb’s Adventure List: Pumpkin Patch
I often see moms post about how sad they are that their babies are not newborns and tiny anymore, or sad that another year has gone by, and perhaps I could have related to that feeling a few years ago.
But, I just can’t relate to it now. I realize that my perspective is different than most, which is why I feel like I need to share it, especially this month.
I’m not sad that our boys are bigger, or that they are continually learning and doing new things. I doubt that I will ever look back with tears and want to go back to those newborn days.
I’m thrilled and delighted that they are ABLE to get bigger. That they are ABLE to grow and learn. Why am I delighted?
Because Tori wasn’t given that opportunity. Because Krabbe robbed her, and us, of a normal childhood. She stayed little, like a newborn, for her entire existence. She never learned to talk, walk, laugh, play.
We would do anything, anything, to have her here today, in full five-year-old glory.
And it is with that perspective and passion that I write, parent, and live.
I am truly overwhelmed with gratitude, amazement, and joy with every new milestone reached, and I don’t look back at their newborn pictures with sadness (disbelief that they were ever that small, amazement at how far they’ve come, but not sadness). Part of that is because newborn twins are seriously challenging and I don’t want to go back to that phase, but it’s mostly because of Tori, our precious baby girl who was taken from us too soon. I LOVE watching them learn and grow as healthy little men.
What makes me sad is that there are babies born each year with a treatable condition but that their ZIP code determines whether they have a chance to live or not.
What makes me sad is that families like ours, families with so much love for their children, have to say “see you later” to their child and be separated from them until we get to Heaven.
I fight for Newborn Screening for Krabbe because I don’t want anyone else to go through what we’ve experienced. I want babies born with Krabbe to have the same opportunity for life as any healthy baby. I want their parents to be able to see their children achieve typical milestones. I want their children to grow up.
I know motherhood is challenging and it’s easy to be frustrated. I get it. I have my moments like anyone else. However, in those moments I remember that not every child gets to grow up, like my Tori, and I remind myself that I have so much for which to be thankful.
I pray that you can do the same. ❤
Our boys are sixteen months old now. They walk everywhere, they love being outside, and they love experiencing new things.
Most of the time I feel as though we have struck a great balance between being home and going out to do things, but some days I feel this pressure to do everything. If I find out we have to miss some event or function, I feel like they are missing out. I feel pressure.
This isn’t a pressure induced by social media, however. Yesterday I realized that it’s because all I’ve ever known as a parent is limited time. A deadline. A looming end point and the danger of permanent regret.
With Tori, we had less than two years to try to give her all the experiences we could manage. Krabbe robbed us of time. Krabbe made us feel rushed. We did things she was far too young to appreciate because there was pressure. We didn’t have time to waste. We didn’t want to have any regrets for her, or for us as a family. And, thankfully, we don’t.
Yet, I have to stop and remember that, Lord willing, we have time with the twins. We don’t have to do everything right now, and we don’t have to be disappointed if we don’t take them everywhere to do it all at this age. They don’t know what they’re missing, and if they are happy, that is all that matters. We have the freedom to wait until they can better appreciate whatever it is we want them to see/experience.
I’m praying that my heart can rest in that hopeful knowledge, that I can be better at just taking one day at a time, one moment at a time, and providing the boys with a well-balanced life. Rest is equally as important as stimulation and experiences, and I pray that we as parents will have the wisdom to do what is best.
I’m so thankful for this gift of time.
You may remember that our home is currently split into two separate apartments. We currently occupy the first floor and the basement; while someday we hope to make it back into one house and utilize all of the space for our family, for now we make it work and I think we do it fairly well.
It takes creativity to have four people live in approximately 700 sq. ft. (plus the basement), and it takes some time to figure out the best way to arrange things. We’ve been here 2.5 years and I’m still always thinking of new/better furniture arrangements. 🙂 Everything must be multi-functional in order to live comfortably.
One of the things we (by we, I mean my dad) did to make the living room (which had been split in half with a wall and a door to create a bedroom) more functional was to put in french doors. In the future, it can just be part of the living room/an office and not a bedroom, but it is currently the boys’ bedroom.
Until last weekend, the living room was also their playroom (which is fine, as we do not believe children should be confined to a separate space – this is their home, too, plus, how?).
We wanted to make better use of our available space so we took down the huge crib (where Caleb had been sleeping) and added another Pack-n-Play (with a good mattress, like Isaiah has been using).
This allowed us to move their play area into their room and make it an even better living situation for us all!
We also have a reading station and a music station in the living room, as well as other bigger toys (currently these tunnels) for them to enjoy.
They carry their toys from room to room and it’s never this clean (I quickly tidied up to be able to take a decent picture!), but that’s okay. We wanted them to feel free to have fun and to play wherever they want, safely. Toddler life is not a tidy life, and I wouldn’t have it any other way.
While it isn’t always easy to live in a small space, it is possible, and it is worth it. It’s saving us money, helping us become debt-free, and it’s forcing us to be thoughtful about using every inch wisely. And there’s less space to clean 😉
When we started to create a “bucket list” for Tori, we knew time was short. We knew we had to cram as much into her limited days on earth as … Continue reading Isaiah and Caleb’s Adventure List: Build-A-Bear
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.
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.
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. ❤
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. ❤