The Gift Of Unlearning: Raising a Child with Intellectual Disabilities

Photo by Ivan Bertolazzi

I remember the day Emily was born. She came along twenty-two months after her brother, Justin. It was such an easy delivery. The doctor barely arrived in time to catch Emily as she emerged from the safety of my womb. I remember teasing the doctor that she shouldn’t get paid to come in just in time to catch my girl. We had a good laugh. We did not know with certainty that we were having a girl. (Justin was always certain he was getting a baby sister.) Dr. Schwartz asserted that she knew Emily was a girl because her hand was the first body part to emerge. “The girls always come out with their hand out first”, she said jokingly. This was the setting of my delivery. It was fun, laughing, joking, and calm. The vibe was high. The delivery was wicked fast. Emily was perfectly healthy.

Emily’s delivery was such a contrast to her older brother’s birth. Justin was in fetal distress. The umbilical cord wrapped not once, not twice, but three times around his neck. The delivery process was too far along to do a C-section. He was vacuum extracted, and he was not breathing. I was terrified. Todd wasn’t able to cut the umbilical cord, and the doctor apologized for this, but Todd didn’t care. He just wanted Justin to be okay. The doctor passed Justin to a team that was waiting. As I looked at his incubator, I could not see Justin. I only saw a sea of yellow blocking the view. Justin was surrounded by a medical team trying to get him breathing. I kept asking if he was okay. My mom and Todd kept telling me everything was fine, but I refused to believe them. As the doctor began stitching up the incisions she made to expedite Justin’s entry, all I could do was cry and pray he would breathe. When he finally let out a cry, I finally exhaled.

I have reflected on the tale of two deliveries for years. Justin, while having a challenging time coming into the world, was not impacted by it. He is brilliant and physically healthy. Emily’s birth, while easy and uneventful, was followed by challenges. She has both physical and intellectual disabilities. I remember when my healthy baby girl began to lose weight, and I sensed she had some physical delays. The fear of anything being wrong consumed my thoughts. When one of the specialists we saw thought that Emily might have Cystic Fibrosis, I was terrified, but I believed it was something I could handle.

With great clarity, I recall the conversation Todd and I had after Emily was tested for CF. As we shared our worries and fears, I distinctly remember telling Todd that I could handle anything that might impact Emily’s physical progress, but it would devastate me if she had cognitive delays. As long as Emily could talk, we would be okay. I believed that an inability to communicate with words, or read, or write would be the worst thing. I love conversation and I believed having a child that was unable to do that would be impossible to process. What kind of life would that be without words? I didn’t think I could handle Emily having an intellectual disability. Twenty-two years later, Emily’s intellectual disability hasn’t crushed or destroyed me. I was so wrong.

I understand the woman I was when Emily was born and the biases I had. My parents valued education. Intelligence was associated with your worth. My mom never gave a damn about looks or status, but she did care if you could conjugate verbs and articulate well. It wasn’t just my parents, but society values intelligence and education. Often individuals that are unable to speak to communicate and express themselves are looked down on. The intellectually disabled are often seen as “less than” by society. I am ashamed that I once shared this view to some extent.

Emily shined a bright light on my beliefs and helped me see just how flawed my views, the views of my parents, and the views of society are. She has challenged the validity of my thinking and proved that her intellectual disability is not something I could not handle. It did not need to be fixed. She has shown me that her gift and worth are equal to every other human on this planet. Her worthiness is not dependent on her IQ or ability to write an essay or recite a poem. She is worthy and whole exactly as she is. I am proud that Emily has taught me to see things differently. She has expanded my views and changed my perspective. I have learned to unlearn. It is my hope that Emily and others that walk a similar journey help others unlearn too. As we unlearn things we think are true, may we grow in our ability to accept each person fully and completely as they are.

Published by bshort1968

I am a self-described caregiver. I love to help and care for others. I have learned the value of caring for myself as well. Now I want to live my life helping others learn to care for others and take care of themselves as well.

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