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  • Writer's pictureStephanie Gaur

A New (Extended) Family: NODCC

I sat in a chair beside Chris in quiet anticipation of the first session, glancing meekly at the other parents sitting near me. There was a nervous energy in the air of the divided ballroom. This was the first session of my very first NODCC Conference in Frisco, TX this past July. The NODCC is the National Organization for Disorders of the Corpus Callosum– the organization that supports families with resources and research for the brain condition that Brooklynn has.


This particular session was intended for parents of infants, toddlers, or preschoolers with one of these conditions. I waited eagerly to see what this conference would entail, hoping the 1,600 mile trip would be worth it– hoping that I would learn something new or take home some new strategies to try with Brooklynn. Little did I know, I would gain infinitely more than that.


As the first session began, the facilitator, the Mom of an adult with ACC, sat gently in a chair at the base of the podium.


“Why don’t we go around and share about our families and what brought you to this conference,” she suggested.


I put my hand to my stomach and kneaded the knots that took root.


I hate talking in front of this many people– maybe Chris can speak for us”, I thought.


I half listened to the other parents as I began to practice what I would say and recited it in my own head (confessions of an anxious person). After a few minutes, through my scattered thoughts, my ear caught a few words– “...35 weeks pregnant… fetal MRI… shunt…” Breaking from my own thoughts, I began to listen to what the other parents were actually sharing.

I felt my eyes burn as I listened to the other parents share their own personal stories. I heard our story– Brooklynn’s story– reflected in each of them.

Other parents who found out about the diagnosis in-utero.

Other mothers who underwent fetal MRIs.

Other parents who endured a NICU stay.

Other families who lived at endless doctors appointments and therapies.

Other parents who have become self-taught brain experts.


Never have I felt so connected to another parent– so validated in my feelings and experience. I continued to listen, enthralled with each testimony, connecting with each in many ways when finally, it was our turn to share. I turned to look at Chris, met his eyes, and then I gently stood to share.


“I’ll start by telling you that I’m a crier and there will definitely be tears,” I smiled.


Parents chuckled and smiled in encouragement. I began to share about our personal journey with Brooklynn– from the womb to the very present . Through my watery eyes I watched the other parents nod along in true understanding and solidarity, having shared so many similar experiences. Suddenly the knots in my stomach were gone. I knew that these were my people.


These were the parents who understood what it was like to be given terrifying news about their child– they knew what it was to leave appointments with more questions than answers.

These were the parents who understand the ins and outs of MRIs, EEGs, seizures, IEPs, therapies, and devices.

These are the parents who understand what it is to second guess your decisions and hope that you’re making the best choices for your child.

These are the parents who understand the purest form of joy that a child with a disability can bring to the family.


All of this, and it was only hour one of day one of this conference.


Throughout the weekend I learned an incredible amount of information about the anatomy of the brain, neuroscience, cognition, therapies, social-service supports, the latest and greatest in research on disorders of the corpus callosum, etc– all of which was exceptionally important– and yet, the most impactful aspect of this conference were the relationships built. The NODCC community is a family. I had an instant connection with everyone around me. Throughout the weekend I watched as kids, teens, and adults with ACC interacted with one another and with families– everyone showing pure acceptance, understanding, and genuine friendship. The most beautiful moment of the weekend being the final night– the dance. Try to put yourself into this scene. Feel the purity of the moment:


The music swells to the rafters of the grand ballroom as people flock to the dance floor for the ‘ChaCha Slide’. Parents, grandparents, children, adults, siblings, abled and disabled are all dancing in unison. Families begin to mix and match. A girl in her 20’s grabs hold of a young child’s wheelchair, swiveling it back and forth to the music as her face beams. A teenage boy dances awkwardly off the beat with a wide smile on his face. A small boy dances from the side of the room from underneath noise canceling headphones. Families sit at tables around the dance floor clapping along, smiles on their faces, and tears in their eyes. A moment of pure love and joy.


I am so grateful to be a part of this community– this family.







Check out the NODCC (National Organization for Disorders of the Corpus Callosum)


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kwinsted
kwinsted
Sep 17, 2022

This was so moving, Stephanie. You write so beautifully! I was transported there and reared up along with you. So glad you found this wonderful conference to extend your family.

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Stephanie Gaur
Stephanie Gaur
Sep 17, 2022
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Thank you, Dr. Winsted! We can't wait for the next one and we are trying to find ways to give back to the community in the mean time!

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