Editor's Note: From the moment I began reading Ellen's To The Max, a blog about life and love with her son, Max, who had a stroke at birth. I immediately found myself captivated by her honesty, something that is sometimes lacking in the disability world. Read on for her thoughts on raising a child with a disability and the importance of the mother-child bond. And, of course, I couldn't resist asking Max a few questions, too...
Describe a bit of the emotional journey you found yourself on after Max's birth?
After Max was born, I was pretty devastated. Obviously, you're never prepared to have something go wrong during a birth, but what happened to me was beyond shocking: my baby had a stroke. I hadn't even known babies could have strokes. And we were told the worst: That Max might never walk or talk. That he could have mental retardation. That he might have vision and hearing problems. It was overwhelmingly awful. The only thing that made me feel better was being proactive. I decided I was going to give him every possible chance. I got him therapy at two weeks old. I got him enrolled in our state's early intervention program. I got him supplemental therapy through our insurance company, and what they didn't pay for we paid for out of pocket. We tried alternative treatments, too, such as hyperbaric oxygen treatment. Our motto: If it couldn't hurt and might help, we'll do it.
Describe your greatest joy in being Max's mom. Is there any particular moment that sticks out in your mind?
It's hard to describe the greatest joy, because there is so much joy every single day with Max. He is a very happy, smiley, loving, cheerful kid. Oh, and handsome! His exuberance for life is contagious. Currently, for instance, he is in love with the color purple. He points it out wherever he spots it, wherever we are. "Ur-ul! Ur-ul!" he says, his way of saying purple. It always fills me with joy. I have a little boy. Who loves purple. And who wants the world to know it.
How important, in your view, is the relationship between a mother and her child with a disability? How does it differ from the relatonship mothers have with their other, able-bodied children?
I have a typically developing child, too. I can honestly say that sometimes, my son with cerebral palsy gets more attention because, pragmatically, he needs it. Max needs help being fed; my little girl doesn't. Max needs help being dressed; my little girl doesn't. But I love them equally, of course. There is more than enough love to go around!
What do you see as the biggest misconception about children with disabilities?
That their personalities are disabled, too. Max may not be able to express himself like other kids or move like other kids, but he has a definite sense of humor and loves to be around other kids and socialize with them.
What is your biggest concern for Max and other children with disabilities?
I've often written about how hard it is to navigate interactions with other children, who don't always "get" Max. I want Max to have lots of friends growing up, friends who are both disabled and typical.
