It’s such a learning experience being a parent. Your whole life changes in so many ways and the sense of loving your child creates astounding growth in character. The hard part is that no one prepares you for just how hard it is being a parent, let alone being a single parent. Or a single parent raising a child with special needs.
No one really thinks about that but it’s exactly where I found myself as I waited helplessly for my daughter’s heart surgery just 12 hours after her birth. You quickly find that you’re now fighting both your battles and those of your child, too.
Children with special needs give you a heighten sense of inequity and struggle in all directions. Not more, not less, just different. I learned as the years went by to stop fighting the system - it’s so big and overbearing. Instead, I focused on spending more time just enjoying moments with my child. I joked that time literally flew by but every day seemed like an eternity.
One of the things I find as a parent of a special needs child is the lack of emotional support out there. Whether you’re comfortable asking for help or have too much pride to take off the supermom cape, there’s a huge feeling of being alone.
I coped with the loneliness and isolation by keeping busy and over-eating. Add a touch of perfectionism in trying to keep it all together, and life can seem like a daily grind.
Besides my ever-expanding waistline, I was desperate to help my child with her challenges. Funny, but it didn’t occur to me for almost a decade that she was not going to outgrow her limitations. How could I not understand this? For years I hauled her around the therapy circuit - occupational, physical, speech, cognitive therapy but nothing helped her as much as being with her family, pets and being in nature.
Then one day in high school a special ed teacher made a casual comment how my daughter would always love Scooby Doo and, that it was normal. Normal? My heart ached for her. But you know what I overlooked? She has a heart of gold. She’s perfect just as she is. I just needed to realize it.
I love her dearly but when you’re told your child will always need care, that the chances of her getting a job or contributing to society are slim to none, well the pressure to find support is constant and it can skew your choices.
I have learned to accept the mistakes I’ve made, and move on. We all experience some failure in our efforts to try new things and, it’s ok.
My beautiful, happy daughter teaches me as much if not more than I ever taught her. She loves people and has the most positive outlook on life I’ve ever known. Her warm smile lights up a room and she excels in so many ways I wonder if she realizes it. It’s amazing what you learn from your kids no matter what their capacity is. Most of all I’ve learned about love.
And besides, who doesn’t love Scooby Doo?