When I was pregnant with William, I thought a lot about what it would be like for him to have an older sister with Down syndrome. I thought about how "good it would have been" for me to have had a sibling with Downs. I assumed she would teach him things like patience, or to have less concern for social status or appearance. I guess I thought it would be a challenge for him. And maybe someday it will be.
But once William was born, I kind of forgot those questions. Penny was so clearly his big sister:
And they were so different--she ate solid food and went to school and talked to me. He cried a lot. They're more alike now, and William is working hard on catching up to his sister in walking up stairs and singing songs and demanding parental attention. But when a friend asked me last week how I thought he would be influenced by her, and particularly by the fact that she has Down syndrome, I didn't really have an answer.
The next day, our babysitter extraordinaire took the kids to a local farm. When they got home, I heard all about it from Penny: "Went to the farm. I was a little bit nervous. William scared. I helped him."
William's version. "Goat. Scared."
The official story: Our babysitter encouraged Penny to feed the goats. She put Penny's hand in her own, put feed on it, and together they offered the food to the goats until Penny felt comfortable doing it herself. William held back. But once Penny had gained her own confidence, she coaxed William over. She told him he didn't need to be nervous. She put her hand under his, put feed in his hand, and helped him, just as she had been helped. Or, again, as she said, "William scared. I helped him."
I don't know what the future will hold for these two. I do know that as soon as William wakes up he asks for her. I know that she bosses him around and tattles on him and gives him a kiss if he gets hurt, that he steals her bear and laughs about it. I know that they hold hands in the backseat of our car. I know that he's her little brother and she's his big sister. I know they love each other a lot. And I think that's all I need to know for now.
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8 comments:
That is so beautiful! It reminds me of the relationship Ben had with his younger sister Lucy. I loved hearing the different versions of the trip to the farm. Enjoy! :)
Gorgeous photos!
In my work on reproductive ethics, I hear people bring up sibling issues that, to me, are really non-issues. People wonder if it's "fair" to bear children who may one day have some responsibility to care for their sibling who has a disability. To me, sibling relationships are some of the most valuable and some of the most difficult by virtue of their lifelong nature. That's true whether your children are healthy or sick, disabled or not. I hope my kids will all care for each other for the rest of their lives in different ways. All of them will need support from their siblings, whether they are able-bodied or disabled. If they look to each other as friends and allies for the rest of their lives, I will be satisfied!
Thank you for this. Eon is the youngest of six. We have 3 girls and then 3 boys and felt our family was complete. Surprise...apparently, it's not and Eon will become a big brother in November. This post help put to rest some of my fears about that. :)
Glad you're thinking about it. I wish more attention were paid to the siblings of disabled individuals.
Just so you know, the issues are more likely to start when your kids are older and their friends start to differentiate between them. The junior high/high school years can be very tough. Then, generally, the sibling learns better as they become an adult. It's amazing how many of them go into special education or related fields.
Good luck.
Yes. Anticipation and preparation sometimes serve to fool us into feeling control over our lives. When the plan was already carefully laid. I believe.
Inspiring words in the two books, Gifts and Gifts 2 if you want to read the paths of others.
Barbara
I jumped over from Sarah's blog. This is a beautiful post that brought a tear to my eye!
Thanks everyone for the encouragement. Jane, I do imagine that there will be rough spots ahead. Goodness, middle school was tough enough for me with my younger (much "cooler") sister!
And Ellen, thanks for your thoughts. I couldn't agree more that I want my kids to see themselves as obligated to one another as adults, even if that is inconvenient and counter-cultural.
Amy Julia
What a great post! I am sure as they get older the dynamics will change a little, but it is always great to have a sibling! (I have a brother who is severely developmentally delayed and, honestly, having him has greatly influenced the person I am today...much more compassionate towards all people!)
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