The Diagnosis

Born this way, waiting for the diagnosis.

Born this way, waiting for the diagnosis.

When my first child Oliver was born I didn’t feel like a Mother. I felt all encompassing love, but I also felt confused and overwhelmed. I felt like something was missing. My darling son was born with a disability,  which seemed to upset our medical team, family, and friends. But to me he was natural and right. There was no question in my heart or mind that anything about him was wrong or different, that was just who he was. He came into this world fully as he is.

I understand why I was lost now but in those first few weeks I was devastated and fearful. I wanted to wrap my darling son up in my arms and never let another soul near him. Everyone around us was antagonizing my fears by their poor treatment of him. My son was also a constant handful.  He didn’t seem to be able to see anything and relied heavily on what he heard and smelled.  If he was out of my arms for a second he would get upset. We wrapped ourselves up in each other while we feared the world.

Our medical team seemed sure of his diagnosis, but was unwilling to confirm. We spent weeks visiting doctors, specialists, and interested parties. Strangers would stop us at stores and acquaintances would make jokes about our “demon eyed baby.” We even left a restaurant because the harsh words from other people.

The wait for a formal diagnosis was excruciating. I knew he was blind, I knew he had albinism, but no one would listen to me. I felt crazed and lost. I hoped that knowing would somehow help prepare me. I thought if I could spread knowledge to the ignorant comments, I could make the world better. I wanted to remake the world safer and happier for him. I was completely lost in how to do anything.

I did the only thing I knew to do. I loved him as any mother loves her son. I cared for his needs and tried to adapt to his demands. I starting talking to him when I would put him down, so he would know he was safe. I would carry him with me everywhere and tell him what he was hearing me do. I was so shut off from the world that I talked to my little newborn about everything. The only conversation off limits was what he couldn’t do.

After many attempts we found a doctor that could diagnose him, a Pediatric Ophthalmologist. Joyfully, we took the first available appointment and drove the hour to see him. My husband and I were full of happy hopes.  As if just getting the diagnosis would make all things possible again. We shared dreams for our son and excitedly waited for the big moment.

Trying to get a stroller, two adults, a newborn, and diaper bag in the office took more time than our check in wait. At first meeting we liked our eye doctor. He was personable and seemed knowledgeable by the number of children that looked like our son on his wall. I was so entranced by all the pictures I hardly even looked at him while he talked. I wanted desperately to know that my son would be okay. At two weeks old I was already trying to build Oliver’s life.

An efficient nurse stopped in to dilate Ollie’s eyes and we went back to waiting. This time my husband and I shared whispered concerns. The pictures were our confirmation, we knew something was coming and we were scared. My darling son was fretful and frustrated by having even less vision. We didn’t understand how light affected him, we just knew that it did. I nursed him, neither of us were good at that, and he rested.

Waking Ollie up to examine him should have been the hardest part. Our tiny boy sat on his father’s lap as the doctor put a light in each eye. In moments it was over. It seemed anticlimactic after the number of doctors we’d seen recently; that dilated pupils and a light were all it took.

As I held Ollie to calm him from the lights we were told the diagnosis. “Your son is blind, will likely always be legally blind.” Neither my husband and I could cope with it. How could an instant look tell him that? We asked logical questions like “how could you tell, can you tell us how blind or if he can see at all?” Instead we got a long list of the things our newborn would never do.

We were given official papers of some kind and a card and an appointment to come back. But I can’t tell you much about any of it. I carefully packed my son back into his car-seat, gathered our things, and walked mournfully to the car. If my husband spoke I have no recollection. I was in deep shock.

I focused only on getting Oliver safely into the car. I sang to him as he fell asleep on the road, continuing long after he fell asleep. My tears didn’t fall gently or slow. The eruption happened at once and with devastating honesty. I poured out every fear and failure I had as his mother. I felt broken and like I had robbed him of a true life. I didn’t understand how to make my blind boy do any of those things I was told he would NEVER do and everything was overwhelming.

My husband tried gallantly to calm me. He understood every thought I had but he would not accept that any of it was my fault, or that our son couldn’t do anything. We didn’t know what he could do but in that moment my husband decided we didn’t know what Ollie couldn’t do.

It’s a transformative thought, that no matter your ability, it’s important not to limit yourselves by can’t. With the exceptions of driving and reading, my son has accomplished everything on the NEVER list. He walked at one, with 6 months of physical therapy. He has worked hard for every milestone but he reaches them. He has taught me that challenge and adversity are reasons to adapt not quit.

We hired a much better eye doctor, we get full yearly examinations. We know to what degree he can and can’t see. But we know unequivocally that he can do anything. The diagnosis didn’t define our son, it defined our family. We will never accept when our team tells us it’s impossible or he can’t. We surround ourselves with educators, supporters, and enablers that show him how and help him. We will not allow him to settle for never.

What I didn’t have in those first weeks was my voice as his mother. I didn’t have the confidence in my position or the surety of my abilities. Years later I am sure of all those things. I am his advocate. I am his mother. I am his supporter, teacher, therapists…  As a special needs mom I must be many things. In all of them he taught me that I must first be positive and adapt to adversity.  I will not cave to the nevers.

About Say Hawk

I am a mother of two, wife of over ten years. I am an advocate for my special needs son and a cheerleader for my family and friends. I don't believe in can't and desire to help everyone find a way to fight their N-E-V-E-R-S.
This entry was posted in Awareness, Family, Motivation, Special Needs, Vision Impaired and tagged , , , , , , . Bookmark the permalink.

1 Response to The Diagnosis

  1. Pingback: Why We Advocate | Truly Capable

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