life - or something like it
When it comes to telling my story, it always starts in the same place. I think it’s interesting, and I’m not sure if I’m alone in this or not (feel free to tell me your thoughts), my story doesn’t start when I was a child, or when I got married, or any of the millions of things that happened along the way.
I didn’t become my full self, until I had my daughter, Mia. And yes, all of my experiences shaped me a little, but having Mia in my life has had the greatest impact over anything else. So that’s where we begin.
A little over seven years ago, I was headed into my anatomy scan to find out the sex of baby number 2. It was old hat, we’ve done this before, so I assured Chad he didn’t need to miss work and I’d be fine going alone.
Man, was I wrong.
You know on TV when there’s an ultrasound scene and the tech gets quiet and keeps scanning and scanning the same spot, and the mother starts to ask “What’s wrong?”
It was exactly like that.
But the ultrasound tech can’t tell you anything. Now, I’m left to my own devices and extremely imaginative brain. And trust me, you don’t want to be in there. The most I got was a concerned, “She’s a girl, your doctor will call you soon”.
Fast forward a few weeks and we had our “first” diagnosis. I say first because it would change down the road - for not the best, but not the worst. Our doctors explained that our tiny baby girl, Mia, had excessive fluid in the ventricles of her brain (think of it as tubes that run along the top of your brain and help lubricate it so it works properly - her “tubes” were dilated with extra fluid). They said it’s a simple fix, just add a shunt (kind of a drain that connects to the bladder to let out the fluid) and she should be good to go, they’d keep an eye on things for the next 20 weeks every other week with ultrasound. It was the longest 20 weeks of my life.
Spoiler alert! They were wrong.
It turned out Mia was missing a whole part of her brain! A part that plays a pretty crucial role in development. It just didn’t form, no real reason, and can happen to anyone, anytime. The diagnosis is Agenesis of the Corpus Callosum (ACC). Mouthful.
Ok here’s the sciencey bit. The corpus callosum is a bundle of nerves that runs through the center of the brain and it is responsible for sending messages from one side of the brain to the other. For every single thing your body does, the corpus callosum says, “Hey right leg, step over that curb”, “Hey left hand pick that up”. It’s responsible for small stuff too like drinking and turning your head. Your corpus callosum is also responsible for invisible actions, like decision-making, demand completion, and sensory perception.
The doctors figured this out by taking little 6 lb, 12-hour-old Mia for an MRI where they could see she was missing her corpus callosum. They then delivered the news at the most inopportune time - when we were being discharged to head home with a brand new baby - during shift change. To say it was not ideal is an understatement. But when is getting news like that ever ideal? Hmm. I guess it never is.
So we were sent on our way with very little information and many questions.
I know, I know, it sounds pretty serious, and it is. I’ve just had more time to process, research, and adapt. Don’t misread my sarcasm - it’s just how I cope. It’ll be ok. Stick with me.
The beginning was excruciatingly difficult. The unknown is unbearable. What would her life be like, how would we care for her, what if, what if, what if? Mia and I spent a lot of time crying together in those first few weeks. She cried because her poor little body couldn’t figure anything out or soothe itself, and I cried because I felt like God chose the wrong person for this job.
Enough with the crying.
After I had a few pity parties, I put my big girl pants on and decided we’d figure it out (like I do most things, you’ll come to learn). I received some amazing resources from our county and just started making calls, reading articles, and educating myself on her disability and what it meant for her and our family. ACC is called “the wait-and-see diagnosis”. Who the F coined that phrase and thought it was helpful to worried parents?! Anyway, I wasn’t waiting and seeing anything. I was going to make sure this girl thrived any way I could.
Over the years Mia’s condition has changed a lot. It grows with her. At first, it was late milestones, rolling, sitting, and smiling all came at least 2 months later than neurotypical babies. The first major delay was crawling, she was 18 months before she crawled. Then walking was a hard one, but with the help of a gait trainer (it’s like a big walker) and special braces that strengthened her ankles and feet, she walked from her dad to me for the first time when she was 2 years old. And over the next few years, she would overcome every obstacle placed in front of her. Mia has been in therapy since she was two months old. Physical, speech, dietary, developmental, play skills, sign language lessons, AAC(talker tablet) sessions, and anything else we could get our hands on to help her, and she still receives many services today.
Let’s fast forward 7 years.
Turns out…God did pick the right person for the job! And I will toot that horn all day because this journey has been a HELL of a ride.
Mia is 7. She goes to kindergarten. She uses sign language. She vocalizes some sounds. She walks unassisted. She plays with the other kids. She communicates in all different ways. She has ZERO other medical conditions or health problems. Thank you, God. She is…incredible.
She’s a fighter, she’s tough, she’s sassy, she’s brave, she’s hilarious, she’s brilliant. She’s Mia.
There are still a lot of unknowns. The older Mia gets, my worries change. Will she keep progressing like she has or are we reaching a peak? Will she be able to stay in school and keep up academically? Will she ever be able to live on her own? What will happen to her one day when I am gone? That’s the scariest of them all.
But I recently read a comment from an older mom in our ACC support Facebook group, she said: “Living in fear of what might be, doesn’t help me or her”. And that stuck. While it's okay to have these thoughts, I will not dwell on them. I will trust that while I am able, I will do everything in my power to set her up for success and find the right people/place to help her. I believe that if I open my heart and listen, God will lead us where we need to go for her to continue to thrive and live a safe adult life.
The biggest lesson I’ve learned: This life is full of unknowns and we tackle them as they arrive and prepare for the ones we can control. Whatever is out of our control, we bless and release. And that has truly brought me peace in my motherhood journey.
Motherhood changes all of us. It is one of the most defining moments in our lives as women. There is no way to prepare for it. You can read all the books, but nothing compares to being handed a tiny human and having to take them home and keep them alive - unsupervised! Like, you trust me to do this?? It’s wild! Throw in even more unexpected news like, your baby is missing part of her brain, your baby has Down syndrome, or your baby has a heart defect. That changes everything.
There is a grief you experience. And that shapes who you start to become. I think I’ll save that for another story.
Despite all the hard days, sleepless nights, and fighting for support - I’m grateful to be her mother. I’m grateful I get to experience her resiliency, her funny little smile, and the way she figures out the world around her. Everyone around her is sucked into her orbit and falls head over heels in love with her.
Her life is filled with JOY. That’s all I ever wanted.
At the beginning of this post, I said that my life didn’t begin until I had Mia. What I mean is that when I look back at my life, my childhood, young adult experiences - it all feels like a movie. Like it wasn’t me. The me I am today started being shaped the moment Mia’s heart began to beat within my body. Looking back I think I knew life was going to be different with her.
I’m changed. I am me, because of her.
