May 13th, 2007, was my first Mother’s Day. It was Day 62 at the NICU for my son, a surviving twin, born at 24 weeks gestation and weighing only 720 g.
Day 62, my first Mother’s Day, was also the day my son went deaf due to his fourth course of vancomycin and gentamicin (read about the effects of these medications here). Inevitably, I developed a love
To this day, I still hear the beeping of the machine that was keeping my son alive. I still see nurses rushing through an open space of the NICU, and me, mourning during what should have been a celebration of parenthood. A first-time parenthood! This first-time parenthood was anything but celebratory. I lost twin A, Oliver, two days after his premature arrival, and had been witnessing twin B, Andrej, fight for his life every day since then. The possibility of a perfect entry into parenthood was immediately shattered. I k
On Day 62, my son suffered yet another ‘episode,’ where his extreme desaturation indicated that he had yet another infection. Early on, I had decided to learn everything I could about Andrej’s condition in order to be an active participant alongside the doctor’s team and be included in his daily care. When the doctor informed me that my son’s blood work showed positive for infection, I agreed to proceed with another course of vancomycin and gentamicin. I was not aware that their possible side effects included deafness, but,
I sang and read to my child daily. While talking to him, I would look at the heart rate monitor, which clearly indicated his excitement and acknowledgment of my voice. That day, after his course of medications, I received no reaction to my voice. I knew something was wrong! I felt the meaning of “a mother always knows” applied here. Unfortunately, I was correct: my son was diagnosed with severe to profound hearing loss. My son was deaf! What an oxymoron this was, I thought – a mother musician, and a deaf child. I know now, of course, that my initial reaction was produced by fear and ignorance of Deaf culture. It was purely selfish, as I wanted my child to be able to hear the music I played and share my love of mu
Yet,
My son survived 111 days at the NICU. He survived seven surgeries before his third birthday. He was later diagnosed with autism and mild cerebral palsy. He identifies as an autistic, deaf-with-cochlear-implants future astronaut. Since his dramatic entry into this world, my son has taught me a lot about life, perseverance, strength, beauty, and my own self. He is the reason I never gave up; I never folded under the many pressures of his fragility and the complexities of his care. He is the reason I went back to school to get my masters degree and help other children like him.
I sometimes look back on that first Mother’s Day and what I thought was taken away from me. Today, I focus on what my son has given me. Would I take away the pain from my child and all his medical journeys if I could? In a heartbeat! I would never glorify cochlear implants, autism, or anything else my child struggles with daily, but what I do glorify is his strength to persevere despite it all!
Being a special needs mom is a role that is as complex and challenging as motherhood usually is. You quickly realize what (shit) to let go of and what to hold onto. As much as I hate all the medical challenges my child had to endure, I love being a mom. And I love being Andrej’s mom!
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