I am soon due with a baby that has a brain malformation.
She has been diagnosed prenatally as having an Agenisis of the corpus collasum (ACC). A diagnosis FULL of mysteries, but the one thing is for certain, the cluster of fibers in the brain known as the corpus collasum that connects both hemispheres are missing. Never formed. Gone. My daughter's disability might be minor and invisible, or it might be plaguing. There is no way of knowing until she gets here.
(You can read about the beginning of our journey HERE).
Because of her ACC diagnosis, she has already made me stronger, wiser, and more open to however life unfolds. I think about how she has forever transformed the life of not only her mom and dad, but big sister, who for only the next couple weeks, can hold her throne as center of our universe.
I have not treated her ACC as a secret and have shared freely, gaining much support through honesty. I personally don't feel it's something to hide because it's what has made our journey thus far so unique, not bad, just hard and different.
But the reality is, there are people who will label and define her by the make up of her brain. And because people are curious, I want to educate, but I fear that others will latch onto a label that smothers her light.
Little baby still inside me,
I feel compelled to write you a letter. A letter that directly and openly addresses your ACC with the hope that you are liberated from whatever labels may, or may not come your way.
Your brain was made differently then most, but there are millions of people who's brains are made just like yours. They aren't you, and they are different from you, but you might find comfort knowing that you have this anatomical difference in common. You are not alone.
|Your big sister snuggling you!|
To start with, already you are a sister, daughter, granddaughter, cousin, and a niece.
As you get older, you can choose to view your ACC as your superpower where you are loud, proud, wearing your ability to overcome any obstacle as your emblem, inspiring others along the way. Or have your ACC be invisible, quietly living your life as you define your own successes, seeking out contentment, and discovering your niche in the world.
It's your body. It's your life. Do it your way.
As your mom, I'll be following your lead.
With love, your Mama
P.S If you can wait to be born until I'm off of crutches that would be great. xoxo.