Thursday, August 4, 2016

Welcoming Daphne, and Coping with a Wait and See Diagnosis

Three and a half months later, I finally have the energy (and the napping children) to write about the arrival of my youngest daughter, Daphne.

The pregnancy was an emotional roller coaster, given her prenatal diagnosis of an Agenesis of the Corpus Callosum (ACC). 

 (read about her ACC diagnosis HERE and HERE). 

However the labor itself, didn’t seem important or as profound in comparison to what followed.  When she was placed on my chest for the first time, I was filled with both wonder and worry.  I was in awe that she was actually here but I was still worried.  I was not only anxious about her diagnosis but because of the residual trauma left over from the birth of my first daughter.  Unlike my first birth experience, Daphne and I had instant skin-to-skin contact.  

She was pink and alert and, for all intents and purposes, a healthy babe.  After being reassured that Daphne was in fact breathing, I remember wracking my brain for what to do next.

So, I decided to sing.  I sang to her the songs that she heard me sing to her sister while in the womb.  The ones that came to mind were silly and if I had thought about it, I wouldn’t have chosen.  But there I was, holding my baby girl, singing Wheels on the Bus and ABCs.

From that point forward, she has amazed me.  Lifting her head and tossing herself over to nurse wasn’t an experience I had the first time around.  

Bringing her home and getting over the hump of post partum pains provided me some time and space to begin navigating her wait and see diagnosis as I sat sedentary, trapped by a sleeping newborn.
I glued myself to the online ACC babies support group Facebook page looking for clues about our future.  I followed the stories as this FB community discovered their babies' syndromes, seizures, and received tests and MRI’s.  Parents also shared pictures and anecdotes of their thriving babies.  

No two paths were alike. 
I began living all of these stories as if they were my own

I second guessed my decision to follow the recommendations of our neurologist and not order additional tests to rule out scary potentials unless necessary. 

I took it upon myself to put in the extra initiative, by convincing myself that to be a strong and educated parent, I needed to research all possible scenarios to know if something was wrong.  This included recommendations from support group members to watch YouTube videos of infantile spasms so I knew exactly what to look for.  Instead of feeling empowered and informed, I felt awful and confused.  It was as if all of a sudden I knew NOTHING about babies, or development.  

I stared down at Daphne, not breathing her in, but holding my breath.

There are many ways to cope with a wait and see diagnosis, and there isn’t a one-size fits all approach.  The continual participation in the ACC world was not working for me even though it works for others. 

I smothered my maternal instincts, at a time when I need them the most with facts and information.

Her baby days are short and I don’t want to miss them wallowing in the unknown and living in an alternate reality.  I backed off of Google and Facebook, cancelled an additional consult with another neurologist, and looked at my perfect baby, sighing with relief.  I began listening to my gut and right now, my gut says, we're good!

Instead of anxiety, I gave myself permission to feel joy, peace, and am COURAGEOUSLY, not cautiously optimistic about her future.  

The kid smiles almost all of the time and loves figuring out how to get anything and everything into her mouth.  She knows when to wake up exactly when her dad comes home in the evening and flashes him a wide mouth grin to welcome him.   

Once again, my children have reminded me the value of being present. 

So, how am I learning to cope with a wait-and-see diagnosis?

Like any other child in my care, I listen and respond to what she needs when she needs it. 

Baby giggles, smiles, and coos included.

Resource:  A book that helped me during this postpartum journey with Daphne's ACC was The Gift of Imperfection by Brene Brown. 

Wednesday, March 23, 2016

My Baby and Her Beautiful Brain

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).

At 38 weeks pregnant, I sprained my ankle doing this thing called, "walking to the car."  I twisted it and went and hard.  Two weeks before my due date, I am forced to just think and reflect as I sit on the couch, while my husband and daughter go out for a walk.   

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!
You are so much MORE than your ACC.  Your ACC is only one part of what makes you, you.  Just like your smile, interests, and the color of your eyes are a part of you too.  You are born into many roles in this world, and they will only expand as you grow and change. 

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.