My sis recommended a heart-warming blog titled “Star in Her Eye” narrated by a mother, Heather Kirnlanier whose baby girl has a genetic disorder, Wolf-Hirschhorn Syndrome. It is serendipitous timing as I just began the book “Expecting Adam” by Martha Beck about a mother raising a baby boy with Down Syndrome. Both writings challenge the cultural view towards special needs children and reinforce a mother’s love for her child no matter what the ailments.
One of Kirnlanier’s blog entries describes a time prior to conceiving her child when a friend of hers told her that an acquaintance had given birth to a baby with Down Syndrome. She expressed her condolences to the friend and they both gossiped about how hard it would be to have such a child. She cringes at the thought of talking and feeling that way now that she has her own special needs child. She acknowledges that surely there are medical difficulties with a special needs child – quite profound ones possibly – but she challenges our thinking that such difficulties should inhibit us from moving forward with rearing such a child.
How many of us have said “My babies are growing up too fast?” Wouldn’t it be wonderful to have a child that develops just a little more slowly so that you have more time to “smell the roses, to see in all its minutiae the subtle learnings of a little girl?” How many of us spend an inordinate amount of time raising children only to feel an immense pain when they leave the nest? A special needs child likely requires care throughout her life; how wonderful to have a lifetime with your little babe. Change your thinking and change your world.
I remember watching a mom and her son with Down Syndrome walk into Maria’s kindergarten class a few years ago. My immediate thought was “what a woman she is; that has got to be hard.” After getting to know the mom and hearing Maria talk about class-time with her son, I began to get a small glimpse into this “hard” life I imagined for mom and son. Sure, the mom had her days when she was ready to wring her son’s neck because he would not eat his breakfast before school or he refused to take off his coat when they got into the classroom. How many days was I ready to scream at the top of my lungs because Maria took forever to get dressed? How many mornings did I walk away irritated with her because of her snippy attitude? But this mom also had precious moments with her son – riding their tandem bikes around town; picnics at the park; long, thoughtful discussions about why flowers bloomed in the Spring; and hard laughter when the mom sang her son a certain song. He brought her more joy than she could have ever imagined before he entered her life and that is all that mattered.
We have a cultural bias towards everything perfect – “perfect” being size 2 bodies, no grey hair, wrinkle-free…and able-bodied. “Ableists” as Kirnlanier points out by way of Wikipedia, believe that a disability or imperfection is a mistake or failing rather than a simple stamp of human diversity. It takes people like Kirnlanier and Beck to reverse this type of thinking. Hearing their stories drives open your mind and strips away any inherent cultural bias in you. How could it not? These kids are just like mine and my friends – they enjoy watching bubbles float in the air, smelling flowers, laughing at their silly parents, listening to music, and feeling immense love from their mamas.