Our Story

“Glasses for an 11 month old?”  I sat, kind of dumbfounded, as the pediatric ophthalmologist’s words hung in the air.  “Is that even possible,”I thought?  As a new mom, back in 2008, that’s the only internal response that I could muster, as my baby girl, sat in my lap, having just been guided through all the steps of a pediatric opthalmologist’s exam.

Just as she had begun to emerge from her precious newborn bundle, full of healthy eating, sleeping, rollin’ and rockin’, with lots of smiles & “coos,” so did her mis-aligned eyes. At first, at 5 months, our girl’s “wandering” eyes were sporadic and easy to miss, but by 6 months, her Dad and I were aware that something with her eye’s was amiss.  Like any well intended new parents, we took our baby to the pediatric eye doctor to “get her vision diagnosed and treated.”

That first diagnosis of congenital strabismum, amblyopia, and nystagmus was quickly scripted and passed on to us, with a ticket salesman’s suave. However, what we soon learned is that a diagnosis of pediatric vision impairments is, many times, an unsuspecting parents’ ticket to the colorful and chaotic circus of special needs parenting. We quickly realized her “wandering eye” was not a one time doctor’s visit fix.  In the moment, I tried to hide my stunned mind and heart, as the doctor and his optician fit the tiny, too-cute, but completely foreign plastic frames on my soft baby-girl’s head.  As sure as they were gently placed around her beautiful, bald head, they fit.  

As much as the glasses “fit” our sweet girl in her first year of life, the following months and years became about our family’s journey through the life of not “fitting” – what was understood or what was expected.  What we experienced in our day-to-day family, was a very joyful, curious, typically easy-going, healthy baby, toddler, & pre-schooler life. She was a precocious talker, reader, and explorer.   However, as months turned to years, specialists began using the terms like social pragmatic speech delay, hearing loss, sensory processing disorder, highly verbally gifted, specific learning disability, non-verbal learning disorder, Aspergers to describe how they understood our girl’s experience.  She could read independently at 3 years old and loved to chat, especially with adults. Her memory was the size of an elephants, and her focus sometimes too.  Our girl presented with the playful sashay of a not-quite savant young girl.  She was “smart enough” to make us wonder, but socially active and “rounded out and engaged enough” to make us disregard the thought.  Our girl used her words, grasped her cheerios, and potty-trained right in step with the babies in our shared playgroups.  And yet….

Prior to the multiple specialists visits, in 2008, our family was given the gift and the responsibility to learn that our girl was diagnosed with a neurological structural abnormality (aka brain abnormality) of Partial Agenesis of the Corpus Callosum.  Not more than 4 months after our girl’s pediatric opthamologist’s appointment and diagnosis, did an MRI reveal to us that the nerve tissues that connects the left and right hemispheres (corpus callosum) did not completely form in utero. http://nodcc.org/  This meant that her brain was literally uniquely constructed. Her experience of the world would not “fit” in the same way that others would.  The diagnosis was not presented to us as a syndrome or disease, nor initially a diagnosis of significant consideration. But, as a momma who carried her babies close-on-hip&heart, and as one trained in counseling, I knew there was much more to learn and understand.

Straightaway, the diagnosis of PACC shattered any sense of expectations.  We genuinely had no idea what could or should define our expectations of our girl and of parenting. So for the early years, we sought to partner with specialists in fields of medicine, audiology, psychology, occupational therapy, and speech therapy.  While our love for our girl could not be or grow any more, we were in uncharted territory. Like all eager to understand parents, we got the scientific explanation of the diagnostic’ implications. Phrases like “process information differently or more slowly” and “difficulty in integrating neurological input between the left and the right hemispheres,” were often given.  But none of the specialists, from the least trained and experienced to the greatest could offer genuine description of prognosis of life, in the day to day or the long term. While we worked with some of the greatest hearts and minds on our journey, clarity quickly revealed that our girl’s life and our family’s life was her/our own to be constructed and defined.  And we have done just that.

New parents are counseled that their baby is both one- of-a-kind and “assumed to be normal,” (unless otherwise ruled/out) – a contradiction all parents have to dance with. “Is my child walking and talking at the “normal” spots?”  Many parents “solve” this dilemma for themselves by defining their child as either “normal” or “exceptional/special needs”. However, for us, it became both/and.  While “normal” is a mirage, covering for the median, for what society uses to compare and contrast, “normal” is also a “social code word” that defines value and calculates possibility for social connection, inclusion, or exclusion.  The “fit” of our girl’s infant eye glasses and their necessary special needs medical diagnosis came along side an otherwise very typical, happy, baby experience. Our girl was both happy, healthy, gifted AND disabled (differently-abled).  This twice-exceptional experience is one that has been ours since our beginning.  The hours we shared with specialists, the piles of developmental paper work completed, the multiple thousands of dollars spent for care and wisdom, the methodical collaboration with educators and caregivers, and the giant geographical jumps to move to a place best fit for embracing and freeing our girl – this has been our defiance of “normal.”  Recognizing in the gift of an exceptional brain – our daughter’s brain, that each individual has a unique voice and story to share has been the greatest gift.  She and we have defied expectations AND defined her/our own journey – as individuals, as family, and with the the world. Our girl has created a beautiful space in this life and she continues to share it with others.  It moves in, out, and through the “norms” to be come her story, our story.  We share it, our gift, with the hopes that others might see and hear parts of their story too – and embrace the twice-exceptional experience.

How Far I’ll Go” Music and lyrics by Lin-Manuel Miranda and Mark Mancina

Performed by: Our Girl

 

 

6 thoughts on “Our Story

  1. Melissa says:

    Thank you for sharing this part of your story Melinda. My thoughts and prayers are always with you, and your amazing family. I hope all four of you can feel God’s strength and love guiding, and protecting you each day.

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