It was a year ago that Syona was diagnosed with cerebral palsy. It was a Friday afternoon and we were off to the neurologist. After the standard wait, we were ushered into her office and had a chat about how and what Syona was doing. If I recall correctly, the conversation went something like this:
Doc: “So tell me, what is Syona doing now?”
Me: “She can bend at the waist. She can’t sit on her own, or crawl. She doesn’t really reach for objects. She’s not interested in toys.”
Doc: “Any words or sounds?”
Me: “Nothing much other than an occasional ‘ya’ and some cooing.”
Doc: “So what are you getting in terms of therapy?”
Me: “We get physio.”
Doc: “What are they working on?”??
Me: “Sitting, crawling, stretching and trying to get her to reach for things.”
Doc: “OK; let’s take a look.”
So over to the exam room we went. The doctor measured Syona’s head, height and weight and began the physical exam of her muscles. After talking about Syona’s still-present clonis (a newborn reflex in the foot) and her tight muscles there was still no mention of a diagnosis. So I asked:
Me: “Dr. P, because of Syona’s PVL, we know there’s an increased risk of cerebral palsy. Does Syona have CP?”
Doc: “Oh she definitely has CP; there’s no doubt about that.”
And that’s when the fog came in, and all I could think about was not crying in front of the doctor. (I don’t know why I have that instinct when it comes to doctors. I am a total crybaby and you will find me crying during commercials, television shows, movies, music… you name it, I’ve cried to it.) Then she proceeded to tell us that she was confident Syona would sit independently one day, but not sure if she would ever walk. And just like that, life changed.
This diagnosis, these words — it was a stark contrast to the words on Syona’s initial neurological report: “I was optimistically confident that this patient would escape neurologically unscathed.” To this day, reading that report leaves me feeling a little haunted, like that one sentence offers the beginning of a glimpse into a life that was almost ours — one that was not filled with doctors, therapy and so many physical challenges.
On the car ride home I sobbed and thought about Syona’s future: Would she go to university? How would she get around? I know these were not logical thoughts, just as I know there are loads of people who maneuver around universities in wheelchairs. But these were my thoughts. We were supposed to go to a wedding reception that evening. Dilip asked if I still wanted to go. I answered that I absolutely did. I knew then what I know now: Our life, in all its glory and all its imperfection, goes on.
And over the past year, life has indeed gone on, and it has been amazing.
- Syona now says daddy, mama, ba (for bottle and ball) and mo (more)
- She is interested in toys and is even showing some interest in pretend play, which is a major milestone
- She has recently started inching forward while on her belly
- She has developed a sense of humour
- She has learned so many new concepts
- She enjoys food and eats more than just purees
- She makes me laugh all the time
- She is my favourite person in the world
- I’m doing my best to let go of my former Type-A, career-driven self and focus on my new life as a stay-at-home-mom
- I’ve met so many incredible people online and in real life because of Syona’s diagnosis
We’re about a month away from Syona’s second birthday (wow!), and obviously that’s an important milestone. But I think the anniversary of her diagnosis is always going to be the time when I take a moment and reflect back on how things have changed. Maybe next year we’ll get a cake.
If you have a child with a diagnosis of some sort, do you remember that day or celebrate the anniversary? How has your life changed in a year?