“There is nothing more magical than becoming a parent. I always knew I wanted to be a mother. I mothered everything: stuffed animals, baby dolls, live animals and friends too! When Morgan was born, my role in life was undeniably filled and the perfect job title obtained. My fairytale life was unfolding exactly how I imagined it to be. Morgan was a perfect pink bundle of joy. When I look back, I realize now how young, naive, inexperienced and just plain clueless I was.
I parented with gusto. I joined every mommy and me group I could find. The internet was barely rolling and we still had home phones. I was so motivated to connect with other mothers, I started my own play group. Through these interactions, I experienced child development firsthand. I left those groups with an interesting and yet unsettling feeling that Morgan was “different.” I was experienced enough to know that every child is different but this was more than that.
I could see Morgan was not developing like other toddlers. Morgan had major colic, was often fussy and definitely didn’t hit the developmental milestones on time. I was frustrated, confused and felt I had no answers or explanation on how I was experiencing being Morgan’s mother. I sheepishly brought this up to her pediatrician at every well baby check-up. I was told more than once I was overzealous. I should go home, have a glass of wine and put my feet up. Morgan’s development continued to be questionable and she would hit “typical” milestones on the late end. I would be told, “Don’t worry, she will get there and she will do it on her own time.”
When Morgan was 22 months old, I was just about four weeks away from delivering my second child. I had a hormonal surge. Some would call it “nesting,” but I felt like a deranged psycho who knew something wasn’t quite right and no one was listening. I was determined to get to the bottom of it before Max arrived! I demanded my pediatrician refer me to every specialist who could possibly help me figure out what was going on with Morgan. After visits with orthopedists, developmental pediatricians and a geneticist, Morgan was diagnosed with Williams Syndrome.
My world imploded. II was paralyzed in time, frozen in the question “What does this all mean for Morgan?” In that moment, the earth stood still. Greg and I cried and I remember looking down at Morgan in her stroller and she was totally confused and terrified. Not because of “her diagnosis” but because of the emotions in our faces. Later in my research, I learned how sensitive those with Williams Syndrome are to facial expressions. It’s why they are overly empathetic. To this day, Morgan frequently asks me “Mom are you OK?” when she reads an expression she doesn’t understand.
I dropped into a deep depression. I couldn’t get out of bed and lost seven pounds, and this was at the end of my pregnancy. Two weeks later, I delivered Max, a beautiful, healthy 9lb baby boy. I was lost somewhere between enjoying my newborn who wasn’t fussy and colicy and in combat mode, researching and taking Morgan to every early intervention appointment I could get her booked into.
My fairytale turned into a nightmare. I was scared, felt a huge amount of guilt and often looked at Morgan as this child that I didn’t know. I had so many questions and felt lost, alone and stuck in a role that I had no intention of signing up for. It sounds harsh; I am admitting to an ugly side of myself that I had never explored in such a deep way. I remember asking my sister “what am I going to tell people?” It seemed like a legitimate question as I could barely comprehend what was happening for myself. My sister had a very logical answer, which I was very grateful for. She said “you don’t need to say anything to anyone.”
Life had changed dramatically. The rug was pulled out from under me. I felt I did not know my two year old daughter or what role I would play in her life or how to move forward. I couldn’t even wrap my mind around how I would face all of the other mothers, my friends and my extended family. What will people think?
That was 20 years ago. Since then, Morgan hasn’t changed. She’s still the same little curly top, bright light. But my view of her has changed. I had to reset my dial and re-write my fairytale. I go on and on of the challenges and the pain I have felt watching her struggle to fit in. The many years I have spent advocating for her best life and opportunities. But the biggest gift Morgan has given me, one that has stretched me the most as a parent, is the understanding that she is not my child to shape and mold into the person/daughter that I wanted her to be. Morgan is a child of the universe; she has so much joy and love to give to the world that it is my job to step aside to accept her exactly as she is.
Being Morgan’s mom has taught me to always set my sights, as hard as it is sometimes, on unconditional love.”
- Joanne Starkman, Founder of Innersense Organic Beauty
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I'm not exactly sure why I used the R-Word, but I did.
I even grew up with a Great Aunt who had Down syndrome — someone I loved very much — and yet I used that terrible word like it was no different than "apple" or "pretty".