A Little More: Pinwheels
Categories: Just For Moms, Just For Dads, Special Needs

I usually work in the mornings when the house is quiet, before the rush and hum of our lives takes over the day, like so many parents everywhere--trying to carve out a few extra moments; trying to keep my hand on the slim thread of my life before there were kids, and peanut butter toast and jam-faces to wipe and milk to pour and now, a puppy to feed and walk, too.
But lately, in these quiet, early mornings, I've had company. My middle son Avery wakes to my softest footfalls, and climbs out of bed just one step behind me. I can hear the door to the boys' room open (Avery is careful not to wake anyone else) and the thump of his tiny bottom as he slides down the stairs. Soon enough he's in my lap, head tucked beneath my chin. He doesn't ask for anything; he doesn't try to stop me. He simply sits in the cup of my lap and falls back asleep, while my fingers plink away at the keyboard on the desk.
This is not what I expected, when I learned I'd be a mom to a child with special needs. It's nothing I could have predicted, based on the books I read or the information we got from the hospital. Back when I was a new mom to Avery, I was hungry for stories about moms of kids like mine. I wanted to be able to imagine our future, but all I could come up with was sadness and adult diapers. I needed help.
One mom writing about her life with her son with Down syndrome is Emily Perl Kingsley. In her widely-read essay, "Welcome to Holland," she uses a travel metaphor to explain her new, unexpected life: she'd been planning to go to Italy like everyone else, but the itinerary changed. Her destination was a different place--not better, not worse, just different. Hers would be a trip to Holland.
"Welcome to Holland" came to me via one of the nurses in the NICU. It was a battered, graying photocopy. Someone had taken the time to add a picture of tulips across the top, and at the end there was a little string of stylized Dutch windmills, more than a dozen marching across the bottom of the page.
At the time, I wasn't sure what to make of such a thing. That the woman writing the essay (Emily) had a perspective to share was clear; whether I would come to agree with it, was not. That the person who created the photocopy wanted to help women like me, mothers trying to find their way, was also clear; how these worn, aged pages would aid me, was not.
This is what happened: I began seeing references to Holland everywhere. All the nurses in the NICU wore a particular brand of shoes--they were clogs. There was, improbably, a reconstructed Dutch windmill just off the highway I traveled each day to and from the hospital. And the farmland windmills dotting the wide, open grasslands (which had always looked to me like symbols of the American prairie) made me think of the windmills of Holland. They, in turn, made me think of a simple children's toy--pinwheels. How could I not have seen all this before?
And the same became true of Down syndrome. I began seeing it everywhere--a lady waiting to cross the street on the corner; a young man pushing a grocery cart with his mother; a baby with a tall shock of brown hair; on television, in the news, in the New York Times.
I've been Avery's mama for 5 years already, and it's not just Holland I see. These days, I'm more likely to notice the man walking with the limp; or the young woman with rigidity in her muscles; or the child overwhelmed by sounds. The causes for such things, or the names for them, are not important to me--what I see is the man, the woman, the child. I see what's different, but I also see what we share.
Even still, I'm sometimes caught off-guard. We live in a 70-year-old log home; its walls are covered with layers of dusty wallpaper that peels from the ceiling in long strips. Each weekend, we tackle another room--scraping, sanding, priming, painting. In the kitchen, beneath the fake-brick wallpaper and the magenta paisley paper, we uncover a pastoral scene: horses, riders, trees, a lake. And at the water's edge? A Dutch windmill, of course, just like the ones on my photocopy.
I hope I would have discovered this way of being in the world on my own, but in truth, I think it's something I owe to becoming Avery's mama. And the thing is, I'm grateful for it. I like my eyes that see. Call it whatever you please--Italy, Holland. I like it here, and I don't want to go back.
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Reader Comments (Page 1 of 1)
kristen 6-26-2008 @ 7:27AM
Jennifer, this is so beautiful. Like you, I see things in a new way, too. My son's challenges have opened my eyes and my heart in ways I never would have thought possible. I like who I am or who I am trying to become much better than who I was without him.
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Courtney 6-26-2008 @ 9:46AM
I see these little things, not because I have a special needs child (I don't), but because of your beautiful writings. Thank you!
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Tametha Medina 6-26-2008 @ 1:05PM
Thankyou for "Welcome to Holland"!!!! I have a child with Sensory Processing disorder and this hits the nail on the head!!! I had to learn to except my son for who is and focus on all the great things he can do and not what he can not. I also find myself noticing every parent whose child has a disability.
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Jennifer 6-26-2008 @ 1:40PM
I was talking to a friend about another friend of mine whom she doesn't know, telling her about how obvious it was to me that this friend's son had ADHD and how my friend was so blind to the nuances of the disorder (magnification of sound, calming effects of repetitive motions-showers/massage, stuff like that.) I had spent several hours with the mother explaining why her son did the things he did and that it was not because he wanted to drive his parents nuts but simply because he was trying to cope with his world in the only ways he knew how. The friend I was talking to has a child with ADHD so she knows what I am talking about. She made a comment that brought it all home to me: "You know all of this and can see all of this because you have ADD."
Sometimes we forget that not everyone has been to Holland. I think that because there is so much information out there that we assume everyone has at least visited. As a full time resident I welcome every opportunity to tell others all about my experiences. If I can help just one person understand the difficulties those of us with disabilities (even ones you can't see) face then I am happy. I am very open about my ADD and will talk to anyone and everyone about it.
Thank you for another beautiful post.
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Lori 6-26-2008 @ 3:35PM
I don't think I've ever read one of your blog entries where I have not at least teared up. I think you and Avery are a perfect match for each other. Absolutely beautiful.
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Anne 6-26-2008 @ 4:12PM
I loved this post, Jennifer! Made me get all teary-eyed. Probably because I see myself in it, too.
Just this morning my twins were watching Elmo's World at the end of Sesame Street as I was getting dressed in the bathroom. I heard a child's voice, and listened as he talked to Dorothy about pets. I knew just by listening that the child talking was differently-abled, and as I peered around the door to look at the television screen I saw that he was in a wheelchair and that he probably had CP.
I went back to getting dressed, and soon another child was talking to Dorothy. I listened, whispered, "Down syndrome," then looked around the corner at the television again. I was right, and was so happy to see this little boy talking to that fish about his pet.
Anyway...
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Anne 6-26-2008 @ 4:22PM
I loved this post, Jennifer! Made me get all teary-eyed. Probably because I see myself in it, too.
Just this morning my twins were watching Elmo's World at the end of Sesame Street as I was getting dressed in the bathroom. I heard a child's voice, and listened as he talked to Dorothy about pets. I knew just by listening that the child talking was differently-abled, and as I peered around the door to look at the television screen I saw that he was in a wheelchair and that he probably had CP.
I went back to getting dressed, and soon another child was talking to Dorothy. I listened, whispered, "Down syndrome," then looked around the corner at the television again. I was right, and was so happy to see this little boy talking to that fish about his pet.
Anyway...
Reply
jennifergrafgroneberg 6-26-2008 @ 7:17PM
Thank you for reading, and for bringing your varied, and thoughtful, perspectives to this piece!
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sprhyneer 6-28-2008 @ 9:41AM
Hi Jennifer -- Simply beautiful. It had been a few weeks since you've gotten me to cry, but you did it again! This is one of my favorites. Like you, I have learned and grown in so many ways, thanks to my son who has taught me to see the world with a new set of eyes. I know I am a better, more enlightened and compassionate person because I am Lucas' mom. I wouldn't go back either. Thanks for the reminder.
Sandy
p.s. I am so lame! I read your book weeks ago and LOVED it -- I am posting my review to my blog soon -- will let you know. Hope to meet you in Boston!
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melodyspins 6-30-2008 @ 3:15AM
Jennifer, I have always said that every day my boys take me to places in my heart that -without them- I would have never known existed. You reiterate this so beautifully.
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