My mother just had a baby, and even though I’m so excited to have a new little brother, we just found out the baby has Down’s Syndrome. I’m feeling really confused – I love him because he’s my brother, but I’m scared and nervous and even (if I’m really being honest) kind of wishing he hadn’t been born, at least not born this way. I know this sounds really ungrateful of me, but I just keep crying and crying. Please help if you can.
Lauren Roth's Answer
I remember my father said it, shaking his head in wonder: “She must have a special soul.”
This, after my handicapped sister Rachel had spent hours crying and screaming – full-blown tantruming – because we hadn’t gone to the synagogue, and that day was Saturday.
She does have a special soul, I can tell you for sure now, 39 years later, because so much good has come from her special, different life.
Yes, your new little brother will make you and your parents very sad sometimes – just like my sister Rachel makes us sad sometimes: when we’ve seen other people her age, over the years, walking, talking, graduating from high school, graduating from college, getting married, having children of their own, winning soccer games, having careers….
Your new brother will make your family uniquely sensitive to other people’s feelings and make your family close to each other.
BUT, just like my sister Rachel, your new little brother has a special soul. He will probably, like my sister did for us, make your family uniquely sensitive to other people’s feelings and predicaments, make your family uniquely close to each other, make your family uniquely grateful for their health and abilities, and he will probably bring a lot more good to your family, too, that you’ll tell me 50 years from now.
I remember thinking, even when I was very young, how grateful I was to have legs, arms, eyes that worked! Seeing my sister’s struggles reminded me how very fortunate I am, in all the “normal” ways so many people just take for granted.
About ten years ago, we had a massive flood in our house. We came home from vacation to find our ceiling in a wet, slippery pile on the FLOOR! Do you know what my reaction was? “Okay, this is extremely inconvenient and a very big pain, BUT we all just went on an airplane and returned on an airplane and no one was hurt! Thank God our house caved in and not our bodies and not our plane!”
I think having Rachel as my sister has given me an incredible sense of perspective in life, and I thank her for that. Who else is relatively okay when their house is flooded and they have nowhere to live?? Siblings of special needs children see the world in a different way. They have a better perspective on difficulties and a more grateful take on life. A few years from now you’ll know what I mean.
What other teenager gets up at 6 a.m. on Saturdays and Sundays to take care of their sibling?
Taking care of my sister made me a much more caring individual than I ever would have been otherwise. What other teenager gets up at 6 a.m. on Saturdays and Sundays to take care of their sibling? But my parents woke up every weekday morning to get her to the toilet when she called, so I took her on the weekends, to give them a break. I would hear her call just as the sun rose, so I would sleepily shuffle to her room, walk her to the toilet, help her pull down her pants and sit down, then I’d sleep on the rug outside of the bathroom until she called me again, this time to help her up and to wash her hands. That builds character. That builds responsibility and a sense of caring for others. A few years from now you’ll know what I mean.
One of the most precious things my sister Rachel gave to our family was observant Judaism. Before she was born, we knew basically nothing about living a Torah-true lifestyle. My parents used to go out for lobster on Passover, and wipe off the breadcrumb coating because of the holiday! But Rachel would cry all day Saturdays if we didn’t go to the synagogue – so we went. Rachel loved going to the synagogue every Saturday – so we went. And there we met lifelong friends, who introduced us to the beauty of Shabbat with family, keeping kosher, and being a part of a strong and welcoming faith-based community.
If she hadn’t been born special, we would have been just another yuppie family. Instead, we became special. We gained perspective, we became more caring, we became more sensitive to others, we became more grateful for all the good we have. Rachel made us better people than we would have been otherwise.
I know you’re crying now. Crying is okay, too. There were many, many times my parents cried about Rachel; it was hard work. And it was hard giving up on the specific dreams they had for they kind of child they’d “expected” to have. But Rachel taught us that what we get is sometimes a million times better than what we expected to get, and that inspiration, beauty, and strength sometimes come from seemingly hopeless, difficult sources.
Have we wished many times that Rachel had been born “normal” (in special education parlance, “non-classified”)? Of course. Everyone wants healthy, happy children. Everyone wants healthy, happy siblings. But we realize now that we got exactly what we needed to become the people that we are today.
And more than anything, Rachel is a happy person. I’m not sure we’ll ever know what she understands or how much she understands. But she lives her life with gusto, enjoying the moments as they come, making people in her path better people than they were before they met her. What more can a sister ask for her sister’s life?
Fifty years from now, I’d like to know all the good your new brother brought to your life.