“When the pregnancy test reveals you’re pregnant, your child’s life, your life, play out in your mind. I had nine months to imagine the child I would have in the near future. Thoughts flitted across my mind – would it be a girl or a boy? I’m going to have a baby! What if I don’t make a good mother? Would I make a better mother if my child was a boy or a girl? What will my child’s appearance be like? Are they going to be amusing? Smart? I need to teach my child, especially a daughter, independence. Will she have a plethora of suitors? Prom, oh guy! If I produce a boy, I must make certain that he learns how to treat women. When do I have to show up? When will I be able to learn the sex? The list goes on and on.
My pregnancy progressed without incident. Heartburn, nausea, and tiredness were the only symptoms. The ultrasounds were always clear, and I made sure to inquire about amniotic fluid, her neck, and the length of her limbs. All of them, I was told, “looked fantastic.” I told my doctor in my 39th week that I was dizzy and had a headache at work earlier that day. She wanted me to get a stress test and an ultrasound because I hadn’t experienced any of these symptoms throughout the pregnancy. I went to the hospital for the ultrasound and waited in one room. I was both elated and apprehensive. ‘Something is wrong,’ I said to my husband after what felt like an eternity of waiting. Finally, I got the nurse to confirm that I would be admitted. On ultrasound, they discovered fluid in the baby’s left lung and stomach.
They rushed me into the surgery room for a c-section emergency. A neonatologist and NICU team were present. I was afraid and anxiously clutched my husband’s hand. She was finally born, and we heard her cry for the first time. We exchanged glances, full of delight, happiness, love, surprise, and amazement. It was the greatest joy I had ever known. During that same joyful moment, I heard the words, “She has Down syndrome characteristics.” What had been the happiest time of my life had now become the darkest.
The geneticist came into our room later that night and introduced herself. Her introduction was direct and succinct. She indicated that she had gone to meet our baby and that she did, in fact, have Down syndrome. She explained that she will perform the blood test to provide us with a definitive answer. She went on to discuss Down Syndrome and how things have evolved for persons with the condition in recent years. She claims they are adored and have become “the school’s pet.”
The life I had pictured collided and disintegrated in front of my eyes. I had the impression that I was in an empty room with the strewn pieces of her life. It was as if a tornado had ripped through the room, and I was caught in the middle as her life was ripped apart all around me. I grieved over sleepovers she’d never have, the torn and shredded prom gown she’d never wear, report cards boasting of the honor roll frayed and flying past me like snow, first kisses she’d never had, drowning in heartache tears she’d never shed. Images of her going for college and late-night conversations leading up to her wedding were shattered into a million pieces.
I was trapped in that room in my head for the next few months. Constantly drowning, struggling for oxygen, and relying on pure willpower to make the tornado stop…rewind…never arrive. I was devoured by melancholy like an enraged fire that I couldn’t put out. That room had been my home for three months. I eventually, finally accepted it. I was able to see who was present once I had done so. My daughter, with her beautiful marble-colored eyes and golden hair, stood there, assuring me she was always there. It wasn’t her I believed was missing; it was myself.
That’s where I started. That’s when I discovered myself or at least started to discover myself. The unnoticed me. The better version of me. The more powerful I am. I mean lost in the sense that I was lost in expectations and notions of success based on a misunderstanding of what success actually is. I became engrossed in guilt and projection. This was something I had accomplished. It was entirely my fault.
I gradually began to live in a different manner. A way that was more liberated than I’d ever been, allowing me to see Felicity as she is, rather than as I imagined she should have been. I began to see her DRIVE to crawl as I saw her struggle to move at first. I no longer looked at her with grief, wrath, or fear in my eyes, but with astonishment, pride, and love.
I feel myself defaulting to that way of thinking now and again, but I recognize it and stop myself since it isn’t about me as a parent. It has nothing to do with me. Her achievements have nothing to do with me. Her delays have nothing to do with me. I let go of it, allowing not only her but also myself to bloom.
Felicity was a post-natal diagnosis, and I recall wanting to try for a second child right away to ‘prove’ that my body could work. It has the potential to create a typical child. I didn’t want to try for another child once we got home from the hospital because I was afraid I’d have another child with a disability. I’ve always maintained that most of my problems (at least in my case) are due to me rather than Flick. So I blocked the concept from my mind for a moment and concentrated all of my love, thoughts, and energy on my kid. I eventually sought counseling and came to terms with the minor issues that would not go away. I was eager to start a family of my own. I was ecstatic because I knew Flick would make an excellent big sister. Every month, I awaited the pink affirmative sign with bated breath. Every month, I would be let down. After a year, it was time to see a doctor. Grief began to resurface in the periphery of my eyesight. My heart is pounding. My body is ‘failing’ my daughter, husband, and, most importantly, myself. I felt humiliated, but it shouldn’t have been. There’s nothing we should be ashamed of, and we’ll keep trying.
“Your life can’t be cheerful all the time with a child with a disability,” someone once told me. To which I respond, yes, you are correct. I don’t think anyone is always happy, and if they were, there wouldn’t be as many fantastic breakup songs or tearjerker movies. The happy and sorrowful, the hard and the light, are all part of life’s beauty. I’m not always joyful because life throws us some curveballs. Nonetheless, I have a deep and abiding affection for Felicity. It’s not a good idea to aim for happiness because happiness is ephemeral. I’ve always wanted to achieve peace and contentment. Whether you have a disability or not.
Despite all of the knowledge and education that comes with being a parent, especially a parent of a child with a disability, I still have moments. Moments like being in a store looking for shoes to fit over your daughter’s SMO orthotics and breaking down in front of the salesperson who is attempting to assist you. Saying things like, “I shouldn’t have had to do this,” or more significant events like her first Individualized Education Program (IEP).
When memories of a classmate’s first sleepover, prom, graduation, and other life milestones come to mind, the room darkens and the wind gains up speed. With promises broken, the pieces of a life that never began to move. That old familiar pain, entangled in so many other feelings, a whirlwind of emotions, that fire that wants to engulf me whole, returns. But this time, my gaze is fixed on her, and it never strays. Grief’s winds have died down. I’ve realized that the issues I have from time to time are more about me than they are about her. If I take a step back, if I freeze the moment and take a step back, I can see the weight of all the responsibility I’ve placed on myself, the weight of the expectations I’ve once had, and I’m immensely proud of that frozen moment in time, as I stare at her playing, laughing, dancing, working, and trying.”
The story and photos: Courtesy of Alyse Biro