That moment when the test says ‘pregnant,’ your child’s life, your life, plays out in your head. I had nine long months to imagine the child I would soon have. Thoughts came tumbling in — would it be a girl or boy? I’m going to be a mother! What if I’m not a good mom? Would I be a better mom to a boy or girl? What will my child look like? Will they be funny? Smart? I need to teach my child independence, especially a daughter. Will she have a lot of boyfriends? Oh man, prom! If I have a boy, I have to make sure I teach him how to treat a woman. When am I due? When do I get to find out the sex? So on and so forth.
My pregnancy wore on with little complications. Nothing more than some heartburn, nausea, and exhaustion. The ultrasounds always looked great and I would specifically ask about amniotic fluid, her neck, and length of her limbs. All of which I was told ‘looked great.’ In my 39th week, I complained to the doctor that earlier that day at work I felt dizzy and had a headache. She wanted to me to go in for a stress test and ultrasound since I hadn’t had any of these symptoms for the duration of the pregnancy. I had the ultrasound and waited in that hospital room. I was excited and nervous. I waited for what seemed like an eternity, looked at my husband and said, ‘something is wrong.’ Finally, I got the nurse to tell me I definitely was being admitted. They found fluid in the baby’s left lung and in her stomach on the ultrasound.
They rushed me into the operating room for an emergency c-section. The neonatologist was there with a NICU team. I was terrified and gripped my husband’s hand tightly. Finally, she was born, and we heard her first cry. We looked at each other — full of excitement, happiness, love, wonder, amazement. It was the greatest joy I had ever felt. In that same moment of joy, I heard the words, ‘She has characteristics of Down Syndrome.’ The happiest moment of my life turned to the darkest.
Later that night the geneticist came to our room and introduced herself. She was blunt and short with her introduction. She stated she had gone to see our daughter and that she did, in fact, have Down Syndrome characteristics. She stated she would do the blood test to let us know definitively. She went on to talk about Down Syndrome and how things have changed for people with Down Syndrome as of now. She said they are loved and in fact become ‘the pet of the school.’
The life I had imagined crashed before me and fell to pieces. At times I felt like I was in an empty room with the remnants of her life strewn about. It was as if a tornado hit that room and I was in the eye of it as her life was torn apart around me. I cried over sleepovers she would never have, I clutched the torn and tattered prom dress she would never wear, report cards boasting of the honor roll frayed and flying past me like snow, first kisses never had, drowning in tears of heartbreak never shed. Images of her leaving for college and late night talks before her wedding shattered into a million pieces.
For the next few months, I was locked in that room in my mind. Continuously drowning, gasping for air and using sheer will to force the tornado to stop…rewind…never come. The sadness consumed me like an angry fire I couldn’t put out. Three months in that room. Finally, finally, I embraced it. Once I did, I saw who was there. It was my daughter standing there with her big marble colored eyes and blonde hair, telling me she was always there. What I thought was lost wasn’t her, it was me.
That’s where I began. That’s when I found myself, or at least slowly began to uncover me. The hidden me. The better me. The stronger me. I say lost in that I was lost in expectations and definitions of success based on no REAL knowledge of what success is. I lost myself in thoughts of guilt and projection. I had done this. It was my fault.
Slowly I started to live in a new way. A way that was more free than I had ever been, which helped me see Felicity the way she is, not the way I thought she should have been. When at first I watched her struggle to crawl, I began to see her DRIVE to crawl. I no longer watched her from eyes of grief, anger, fear…but with awe and pride and always love.
I catch myself at times reverting to that way of thinking, but I see it clearly now and I stop because it isn’t about me as a parent. It’s not about me. Her accomplishments are not about me. Her delays are not about me. Her Down syndrome is not about me. I let that go, I allowed not only her to flourish, but myself as well.
Felicity was a post-natal diagnosis and I remember I immediately wanted to try to have a second child to ‘prove’ that my body could in fact work. That it could produce a typical child. After we went home from the hospital and all was quiet, I didn’t want to try for another child because I was scared I’d have another child with a disability. I’ve always said most of my hardships (at least for me) have more to do with me than Flick. So I put the thought out of my head for a while, and just focused my love, my thoughts and myself on my daughter. Eventually, I sought therapy and made peace with the small things that never quite went away. I was ready to add to our family. I was excited, I knew Flick would be a great big sister. Every month I would anxiously await the pink positive sign. Every month I would be disappointed. A year passed, it was time to call the doctor. The grief began to slip back at the edge of my vision. My heart heavy. My body ‘failing’ my daughter, my husband, and mostly me. I was embarrassed, yet this shouldn’t be embarrassing. There’s nothing we need to be ashamed of, and we will continue to try.
Someone once said to me, ‘Your life can’t be happy all the time with a child with a disability.’ To that I say, you’re right. I don’t know that anyone is happy all the time, and if many people were… there wouldn’t be as many great breakup songs or tear jerker movies. The beauty of life is in the happy and sad, the hard and the light. I’m not happy all of the time because life is hard now and then. Yet my love for Felicity is deep and far-reaching. Happy shouldn’t be your goal, as it’s fleeting. Peace, contentment, that’s a goal I’ve always had. Disability or not.
Yet with all the insight and the continuing education that is being a parent, and being a parent of a child with Down syndrome, I still have moments. Smaller moments like being in a store trying to find shoes to fit over your daughter’s SMO orthotics, and breaking down in front of the salesperson who’s trying to help you. Telling her, ‘I shouldn’t have had to do this,’ or bigger moments like her first Individualized Education Program (IEP).
When thoughts of a first sleepover a classmate has, prom, graduation, some of the milestones of life, cross my mind — the room begins to darken and the wind picks up speed. The pieces of a life that never was, begin to shift with promises broken. That old familiar grief tied up in so many other emotions, a tornado of emotions, that fire that wants to consume me whole starts to come back. But this time my eye is on her, it never waivers. The winds of grief settle. I realize what I struggle with from time to time is more about me than it is about her. If I step back, if I freeze the moment and step back, I see the weight of all of the responsibility I’ve placed upon myself, the weight of the expectations I’ve once had, and in that frozen moment in time, as I stare at her playing, laughing, dancing, working, trying, I am immensely proud.