My son with special needs turned sixteen last week. My father reminded me to say a prayer, expressing gratitude for having raised him to this point in time. I am thankful that he is happy, loved, that he walks and talks.
It is, however, bittersweet. Oddly enough, I am most sad that he is not on his way to driving a car – the highlight of turning sixteen for most teenagers in the United States. The ability to leave the house and your family and find your own way is liberating. I still love to hop in my car and drive away sometimes. Except this time I’m running away from my children. Sweet separation. My eldest son is seventeen and he drives. His little sister once asked where her brother, the new driver, was.
“Out,” I answered.
“Why?” she asked.
“Because he can,” I told her.
I vividly recall my elation at getting my license and the incredible freedom I felt. I remember going “out” as often as I could, to that elusive place where parents can’t find you. Nowadays children can’t be as unavailable as they’d probably like, poor things, because of the homing devices that are their cell phones.
It makes me sad that my second son cannot go “out,” although he doesn’t seem to want to. He is not focused at all on the fact that he is not on the driving trajectory. In fact, he would probably be happy to stay “in” for the rest of his life. He’s happy surrounded by his family and his beloved video games. It’s tempting to let him stay in forever, to keep him safe and sound.
“Maybe he could try taking the driver’s ed course, to see if he could even pass?” I mused to my husband and other children.
They all dismissed the idea as ludicrous. He would be a danger to himself and others, they argued. His lack of attention to the world around him could have disastrous consequences. Are we selling him short? Am I crazy and deluded? Maybe a little.
It’s part of the ongoing see-saw of raising a differently-abled child. I am grateful for the things he is able to do but the grief for what he can’t do lurks in the background. His brothers are tall, strapping young men like their father. I encourage this son to consume as many calories as he can, so that maybe he can be as tall as his five-foot-four-inch mother. I cling to things I may have a touch of control over, to maintain an illusion of normalcy.
There is a popular essay which is given to many parents when they have a disabled child. It is called “Welcome to Holland.” The gist of it is that you were planning a trip to Italy and were shocked to find you arrived in Holland. Once getting over your disappointment at landing at the wrong destination, you look around and discover the beautiful things in Holland. It’s a lovely metaphor to try to make you feel better about the immense sadness and disappointment you feel when you have a less-than-perfect child.
It works for a while, perhaps getting you through the early years of crushing hardship and disbelief. I have a group of women friends who I met in a support group ten years ago, all who have disabled children. My “Special Mom” friends, I call them.
“Holland sucks,” we wholeheartedly agree.
But here we are. We strive to savor the sweet and tolerate the bittersweet.
So Happy Birthday to my young man. Who cares that driving’s not in your future? I’ll teach you how to ride the bus.
Very good my dear daughter. I know Benjamin’s life is an adventure and adventure isn’t always fun and games. God alone knows what his future holds so we shall just have to leave it in His
hands. We just have to hold hands and march forward always together.
Dad
Love this Kisses Leesa
Sent from my iPhone 301-254-1959 Please excuse typos!!
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Susan, you are an inspiration…I love the Holland analogy.
By the way, height is highly overrated (says this 5 foot grandmother).
We wish you and your family has a Happy and Healthy New Year.
Susan, I just love your authenticity. I went from reading Brene Brown on vulnerability to reading your blog. It makes me hopeful about life. I am sometimes too honest or “real.” It can be hard for people to take. You inspire me to keep being who I am and to see the blessings in the hurts.
I didn’t own a car until I was 22. I took the bus or metro and guess what? The system is pretty good and I read a whole lot more.
One of the most beautifully written and touching pieces I have ever read about differently abled individuals. Happy Birthday, indeed! Kol Hakavod, Susan.
Jody
I cried… but sweet tears… when I read this.
A healthy happy New Year to you all
And a very sweet 16 for Benjamin
Ellen