If you asked me what my life would look like when I got married five years ago, it would have gone something like this:
- A custom-built house in the city.
- Continuing my successful career that I thoroughly enjoyed.
- Two vacations a year — one adventurous trip to a new place and a relaxing beach getaway.
- A couple of easy-going kids who napped well, slept through the night and were in a good Montessori program.
It’s OK, fellow parents; go ahead and laugh at my naiveté. I do.
Here’s what my life actually looks like:
- A home I love that shares the same layout as about 10 others on my street.
- I’m a stay-at-home mom.
- Occasional vacations when our schedules allow.
- One beautiful daughter, Syona, who has Cerebral Palsy (CP).
First, the medical explanation: CP is a non-degenerative neurological condition that impacts how the muscles and brain communicate. Symptoms of CP can present in a variety of ways, with different levels of severity. In Syona’s case, her muscles are extremely stiff and spastic.
At 20 months, she doesn’t crawl or walk yet. She has a hard time maintaining a grasp on objects and feeding herself. Syona will soon be getting a standing frame and likely a walker. We work towards the goal of independent mobility. Like many toddlers, she doesn’t talk yet, but we’re working on it.
It’s easy to get caught up in the list of what Syona can’t do, but our life is just as much about what she can do.
Syona is spirited and opinionated. She can sit with our support. She is determined and motivated — and she’s a fighter. She doesn’t eat a lot, but will almost always try anything once. Her smile can transform the grumpiest of strangers. While she has a hard time holding onto things, she has a miraculous ability to rip off her hat and bib, no matter how secure they are. My kid is bright, engaged and very social. She’s a huge Michael Jackson fan. (“Billie Jean” will instantaneously silence her from the most serious of tantrums.)
In the world of kids with special needs, it is next to impossible to predict what they will be able to do. Time and time again her doctors have reminded us that Syona will be the one who determines her abilities.
We’re in the early stages of parenting, and in the early stages of parenting a special needs child. Like most parents, we’re trying to figure it out as we go along. I’m excited to share our journey with you, and to hear from you about your parenting chronicles — whether your tot has special needs or falls into the typically developing camp.
What I do know is that dreams that I didn’t even know I had have come true, thanks to my little girl, a wonderful husband and an incredibly supportive family. I don’t know where we’ll be five years from now, but I’m excited. I’m also pretty sure I’m going to need a lot more of those beach vacations and a bigger car than my current sports sedan.
Has your life turned out differently than you expected? Where do you see yourself and your family in the next five years?