Whenever I was asked when I was a little girl “what do you want to be when you grow up?” I would always answer “A wife and a mother”. I don’t remember a time when I didn’t want to have children.

My own mother was a stay at home mom with four kids and a husband and I wanted to follow in her footsteps. When you’re young and you think about having children, you never think about them being born disabled or having a disease or anything other than being the perfect children we had seen on TV with the perfect families sitting around the dinner table discussing the day’s activities. At least that’s how it was in my mind; remember, “Father knows best”, “Ozzie and Harriet” and “Donna Reed Show”? We also think our children will grow up and leave home, start their own lives and become contributing members of society. My oldest child Mark followed that path and is an amazing young man.

But Bobby, now 33 years old is still the little boy who loves Mickey Mouse, Disney World, trains, pictures of motorcycles and carrying a few pennies in his pocket, all of which make him incredibly happy.

I’ve always adored both of my children and accepted long ago that Bobby would never grow older mentally. He is always loving, a joy to be with, but very challenging at times with so many drugs in his system for seizure control. He could easily have had a temper tantrum and become difficult to control in public places especially when there was a lot of visual and auditory stimulation. Since he is bigger than I am, I always took him places with his caregiver.

Then something amazing happened which changed everything for us. His medications were decreased and changed, and just as effective with his seizures but with many fewer side effects. At the time the doctor told me there may be another person inside Bobby, a new person because of the change in meds. I told him I loved the Bobby I had, but the doctor was right.

For the first time since he was a little boy, we no longer needed his caregiver on our outings together. Bobby is calmer, easier to get along with and even more loving than before, which I didn’t think was possible.

In the past two years I have enjoyed Bobby more than ever. We’ll be riding in the car and he will start rubbing my back saying “I You”, which means I love you. He sometimes just looks at me with his big brown eyes, and cocks his head a certain way, which speaks volumes of the depth of his love.

We take walks in the mall together and although I try to veer into a store or two, he grabs my hand and pulls me in another direction. He has saved me a lot of money on those outings.

We go out to dinner often, which is another one of his favorite things to do, or he will help push the cart with his good hand at the grocery store. He always likes to pick out his favorites from the cookie aisle, bakery and the chip aisle, just like any other kid.

It amazes me to think it took so long for me to enjoy what other parents enjoy with their children when they are 3 or 4 years old. Throwing pebbles in the water in the park or visiting his favorite store of all time, Rossiter’s Harley Davidson and buying a motorcycle shirt makes Bobby giddy with joy, and me as well, seeing him so happy and content. Bobby enjoys a terrific quality of life now.

The simple things we usually take for granted with our children, are never taken for granted when you have a disabled child. Each day brings a new adventure, challenge, hardship and joy to parents who cherish the quality time they share with their children as difficult as they may be at times.

I am very lucky to have such wonderful experiences now with my little boy of 33 years old, who reminds me every day that being his mom and Mark’s is just what I always wanted to be when I grew up.


Love and kisses,