My Special Gift
It was 2004. I was living alone and began seeing a young man from Toronto. We met online. But it was after talking with a friend that I thought to do a pregnancy test. When it came back positive, I knew things were about to change forever.
Planned or not, when you’re expecting a child you blindly believe that your pregnancy will be perfect. You instinctively trust everything will go smoothly. You have a plan – she will go to college, perhaps university. Maybe she will be a doctor or lawyer. The moment you hold your little one, you think, yes, this is perfect – she is perfect. Then the doctor says something isn’t right. Panic sets in, as your dream, your plans, for your child are seemingly crushed in a moment.
My daughter, Mckenzie, was born at 10pm on November 12th, 2004. Weighing in at 5.5lbs, she was small for a baby considered full-term. Her eyes were a stunning blue, and her skin was rosy. She had tiny fingers and toes – all of them – and no hair. She cried a little, but it was never loud. Her cry was soft, small, like her. But then, the morning after she was born, during a routine exam, they found a cleft (whole) in the soft pallet of her mouth. And so, began my journey as a single parent to a child with special needs.
Our first trip to Toronto Sick Kids Hospital was one of many that year. Further testing was done, and plans put in place for her surgery before her first birthday. A cleft means challenges with feeding. Special bottles were needed because not only did she have difficulty with suction, she easily chocked.
In time Mckenzie grew, but slowly. It became clear that first year that her development didn’t match her peers. Many milestones were missed. In preparation for her surgery, we had many appointments with the surgeon, therapists and specialists. We were there every week it seemed. It was exhausting.
Surgery was scheduled for October 2005, a month before she turned one. Her surgery went well, and my daughter found a way to adapt to the changes affecting her drinking and eating.
However, the second year included more visits to Sick Kids. The doctors’ and I continued to have concerns about her not reaching milestones. She didn’t crawl until 14 months. She started walking at 22 months. Her first full sentence didn’t come until she was 4-years-old. At times it felt like she would never catch up.
After many tests, doctors and therapists, in September of 2008 a pediatric review was done. This review involves a variety of tests to assess a child’s overall development and intellect level. The review showed a mild developmental delay, mainly in her expressive language and fine motor skills. In 2010, she underwent a psycho-educational assessment, which is a tool used to identify a student’s strengths and weakness around learning. The results said that my daughter has a mild intellectual disability (MID). The jargon defines MID as “a disorder indicated by the presence of deficits in intellectual functions and adaptive functions”. No parent wants to be told there is something different about their child. I sure didn’t want to believe it. I felt defeated.
In the years ahead, I pushed Mckenzie to prove everyone wrong. But the delays continued, with new ones popping up as she got older.
While living out West in 2014, my daughter had another psycho-educational evaluation done. The testing took place over three days. Registered Psychologist Marya Stonehouse administered the test. It was intense.
I’m not sure what I was hoping the results would be. Maybe this time the results would show everyone she wasn’t what they said she was. Mckenzie had surprised me many times over the years, and maybe she would surprise Marya.
I received the 30-page report a month later. Taking a long, deep breath with a cup of hot tea in my hand, I skimmed it over. The results were listed on page 19. I jumped to that page, hands shaking. And there it was – my daughter’s “cognitive, academic, and adaptive functioning results support her previous diagnosis of a Mild Intellectual Disability.” I was again crushed. I really didn’t want to believe there was anything different about my child and believed she would catch up.
During her early school years, it seemed like she was falling further behind. I started to accept she was different, but still believed she would catch up in her own time. Now in high school, she continues to struggle with every day living. Small for her age, with a maturity level of maybe at 10-year-old, she gets along best with younger kids, or those that are like her.
When I tell someone I have a teenager, they assume I struggle like other parents with ‘typical’ teenagers. But my challenges are different. Mckenzie will always function at a much lower level than her age, and that’s ok. She is special in her own way. She is my special gift. My focus now is for her to reach her full potential and be happy.
Most parents see their children leaving home at some point to start a life of their own. As a single mom to a child with an intellectual disability, my duty as a parent continues with no real end in sight. Mckenzie will graduate from high school when she’s 21.
What comes next is anyone’s guess, but she and I will face it together.
