My daughter Macey is confetti and sequins. She teaches me how to keep going.
She survived dark, gloomy shadows and came out as a glitzy gladiator who is equal parts fierceness and delight.
It is in the dark that light shines brighter and in trauma that resiliency is grown. ~CB
Her story is exceptional. So is she.
The brilliance lies in that.
And I couldn’t shake the naggy, awake-in-the night at 1:30 am to jot down notes-feeling that I was supposed to share her story.
So I wrote a book.
(A children’s picture book)
Its been very challenging to get this done, but I’m doing it (thanks to a combination of work-from-home-COVID-husband, super-available super-Papa, and some pretty free-range, “did you even eat lunch?” parenting).
I have read that one of the secrets to feeling more alive is to work toward things that inspire you.
Feeling more alive sounds pretty cool and so even though I’m not 100% sure how you can exactly be “more alive” I think what you are after is a life you really want to wake up to each day (just one thing that Macey happens to demonstrate like some little magnetic force of magical nature).
Macey lives the best day ever. Every. Single. Day. She is my inspiration even when things are tough.
And writing about her inspires me, as I hope it does you.
Macey’s journey especially connected our family and taught us many life lessons (you know? the kind you never wished on your worst enemy but found the ability to be grateful for).
The trials our daughter Macey endured were unique. Even the professionals could not have predicted or prepared us for the twists and turns her path would take.
Her life is now an expression of delight. She has her very own way.
Macey embraces the moment, lives life ‘out loud,’ and experiences life and people through a lens of love and acceptance. Assuredly her ability to glow with such brilliance comes from endurance and survival.
For a free poster to remind you to make today the best day ever, click here.
She has fiercely fought to get to where she is today. Her life feels like happiness and is first on my list of ‘reasons to keep going.’
In the Spring of 2014, our daughter Macey was diagnosed with a chromosome disorder, 9p23. What the heck does that mean?
We asked if she would ever be able to live independently or to hold a job or get married. The answer was unknown. It was a rare diagnosis but likely would present most visibly come school-age.
She was only a year old.
This was news that rocked our world in a way the poop-painting clean-up we ‘endured’ courtesy of our two older boys had never done.
We all have an idea of what sort of life we hope for our children. And this didn’t appear to be that.
Suddenly, we were hit with the reality that kids come with risks. They might have needs you think are beyond your capacity to handle.
As it turned out, this was only step one of stretching what we thought was our capacity.
A quick flashback to her birth. She was born and transferred immediately to the Foothills Hospital NICU in Calgary from High River, Alberta. That meant I didn’t get to spend the first night with her.
Both lungs had collapsed, and her blood sugar was wonky. This was very hard at the time — scary and lonely. Since then, the complexities of her journey have changed us forever.
There was grief over the chromosome disorder. We grieved the picture we had for our little girl.
We were entering a world that would require advocacy and adjustments to what we thought of as ‘normal.’
And then, the chromosome disorder shifted to the back-burner. “Tough” gets redefined.
In the fall of 2014, Macey had been sick, unhappy, sleepy, and in-and-out of the hospital (with no answers in sight). On December 1, 2014, the chromosome disorder was no longer on the radar.
On that day, she was as pale as a ghost and weak as a rag doll.
The nurse at The Alberta Children’s Hospital emergency admitted us immediately, and we knew something was seriously wrong.
So many needles and tests and laps back and forth across tiny, stale-aired hospital rooms with a weak, crying, tired baby who was only 20-months old.
At that point, it seemed like the longest night of our life and the worst one. Around midnight there was finally an answer.
Our baby had cancer.
(Later refined to be high-risk acute lymphoblastic leukemia (ALL).)
Cancer. How was that possible? Was this really happening?
They told us that her treatment would be 2.5 years long, and we launched into the great unknown of oncology.
Her chemo couldn’t start because she had pneumonia and was in the ICU. Pneumonia has since become a trauma-trigger word for me because she also had pneumonia when taken to Edmonton on life support (story shared in my next blog post, part 2 of 3).
The first seven weeks were spent in treatment and living away from my other two children, similarly traumatic for them.
Again, we didn’t know that this was only preemptive to what was going to come in the future.
There were so many pokes, blood transfusions, lumbar punctures (spinal taps), chemo infusions, antibiotics, x rays, and tests.
There were mouth sores, medications, a broken leg, fevers, and sad, sad (yet still beautiful) eyes. Some days, when I remembered that this wasn’t going to be over anytime soon, I wanted to lay down in the fetal position and give up (and I was a caregiver, not the patient).
Every day and every single moment seems to matter more. That is a reason in the rubble.
You learn to take it one moment at a time. And you learn to find the magic in moments that might not have been special before.
There are treasures to be found in the rubble and gloom. ~CB
We found reasons – reasons feel like a rare treasure (glitter in the muck). We looked to hope and faith and the support of the euphemistic village.
I knew she was supposed to be mine. I had asked for her. I had prayed for her. But it was hard.
I had to believe I could stay the course, feel all the feelings and thoughts, and put in the effort even when I didn’t feel like I had the motivation or strength.
There was the NICU, the chromosome abnormality, cancer, near-death sepsis and life support (read about this in part 2). When the fog was starting to lift about two years later, Macey was diagnosed with an intellectual disability. This was the fall of 2019.
Despite everything we had learned about the preciousness of life, our inability to control things, and the magic of every day, this was still a difficult time.
In the shadows, it is sometimes hard to find the shimmer – to see the hope. But with Macey, there has never been a choice but to press on – keep going -one little step at a time.
We pressed on even if we didn’t know where we were going, how tough it would be, what life would look like day to day, or how long it would take.
You’ve read this far, but if you’d like to hear my voice talk all things hope and courage, have a listen to the F*It Podcast with Amy Ledin. I recap the trials and triumph here:
In August 2015, I wrote (because I’m always writing on the back of receipts, in notebooks, on my phone, and I live swimming in a pool of sticky-notes):
“She is my little superstar, and one day I will tell her the story of how brave she is, how she has touched so many people, and how her light shines brightly and touches my heart and many around her.” ~CB
She reminded us to enjoy the mundane and of the everyday need to live life, chasing pleasure, and finding joy.
Macey was our reason – our treasure. She was a forced reminder to take the arduous grueling path minute-by-minute, and our push to keep going – to press on – whether we felt like it or not.
“She was what I never knew I always needed.” ~CB
Some reasons to keep going:
- Life is precious. Macey being here today is a miracle. Hidden in the struggle was the gift of a future – even it is still filled with unknowns (just like anyone else, really). We continue to hold onto the preciousness of life.
- There is always hope. You look to the past sometimes to try and find some related reason for the hardest things of life. You have to persevere during those times and perseverance has a way of building character. I think that character and self-growth eventually leads to hope.
- Whatever is hard and makes you feel like giving up leads you to find the magic of every day. That is a success. Not everyone gets that gift. I will embrace that gift even if it is wrapped in aloneness or trials – even if the ‘hard’ comes before the ‘magic.’
- Your focus might shift and one day a friend or stranger may be touched by what you experienced. If you can spread hope, remind others that they are not alone, help friends out of depression, or show others a reason to keep going when they cannot see the light, that is another measure of ‘success.’ I don’t subscribe to “everything happens for a reason,” but if something positive can come from something dark then I want that to be a reason to press on.
Assume the rubble, the gloom, the dimness, and dusk offer more. You are capable of the uphill glee-less seasons of life.
~ Keep hoping. Keep going. Press on. You will find reasons (treasures), or they will find you. ~
P.S. This is part 1 of 3 ~Macey’s Story, Our Story~ Find part 2 and 3 at caitlinbangsund.com/blog – click here for part 2.
P.P.S. You can grab the book here (plus a delightful song and video)!