Q&A for Teens: Special Soul, Special Brother
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Q&A for Teens: Special Soul, Special Brother

Q&A for Teens: Special Soul, Special Brother

My mother just had a baby, and we found out he has Down’s Syndrome. I keep crying and crying.

by

Dear Lauren,

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.

Published: August 17, 2013

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Visitor Comments: 24

(20) Bracha, August 28, 2013 3:30 PM

Me Too

Your question could have been written by me 7 years ago when my brother was born with Down Syndrome. I was angry, I was embarrassed, I was confused, I didn't know what to think. And it was hard. I want to tell you like everyone else that things will be good, and you will see that he will be the best thing that happened to your family. BUT I also want to tell you that it's okay to go through some sort of 'grieving' process because after all, things turned out differently than you expected them to. And it's okay for you to be upset about that for a bit.
I want to also tell you that you have to make sure to take care of yourself. I don't know what your family dynamics are like but I'm sure now that with a new baby, especially one with special needs, you'll be helping out a lot around the house. Make sure that you give yourself time and space also, and if things get to be too much, make sure you speak up and ask for a break, because you deserve it. Don't push yourself too hard. When my brother was born I was in high school, and I stepped up and took a lot of responsibility on, and then I was resentful when it wasn't appreciated. It's important for you to not get to that point, and in order for that to happen, you have to look out for yourself too.
Also, if you can get a hold of some of the frum special needs literature that's out there (ie Spirit Magazine, Down Syndrome Among Us) it can provide a lot of chizuk to you and your family. And if you know someone who has a sibling with Down Syndrome, see if you can connect to them somehow - they can help you out, even by just being a listening ear.
Chazak v'ematz and enjoy him!!!

(19) Anonymous, August 27, 2013 6:18 AM

This summer I spent three weeks working in a camp of special needs children, and it was one of the most amazing experiences!
Someone recently lamented that it was so sad that there were so many special children, however, though of course it is extremely difficult for the parents and family, the children were all so happy, so cute (I worked with the younger ones) that I didn't view it as a sad situation. Really, I forgot that these children were special needs, they were just my cute, happy, funny, fun and yes sometimes difficult campers. As someone put it, they are regular children, just with a disability. Enjoy your brother and his special neshama.

(18) Anonymous, August 25, 2013 4:40 PM

I know how you feel...

To the author - i know how you feel. My niece, has mild Cerebral Palsy. I know how incredibly sickening and sad it feels when you work so hard getting the baby to develop and they have trouble doing the simplest tasks that all babies can do.

Yet, its that same baby that has changed my life forever. She has taught me patience, perseverance, etc. Things that i can NEVER learn with any patient i can ever treat. Plus she is one of the most strong, loving, and beautiful babies ive ever known. Who is doing EVERYTHING that EVERY single baby does.

there will be times you feel sad (i still feel sad about it sometimes), but you will get over it and cherish the small things that makes life so precious

(17) Anonymous, August 25, 2013 12:26 AM

Respectful language

Lauren's answer described my family's situation as well. The unknown is scary at first but love takes over and the medical diagnosis doesn't seem to matter anymore. At least not to those who love the person. One thing we can all do to make life better for people with a disability is to use respectful language when speaking or writing about them. The correct name is Down syndrome. No apostrophe "s". A person should not be referred to as a Down's. They are people just like everyone else who happen to have a medical condition called Down syndrome. One doesn't call a person who has cancer "a cancer" or "a cancer person". No one should be labeled by a medical diagnosis as that is only one small part of who they are. Think carefully before using word that may hurt others. This is one way to help people with disabilities and it DOESN'T COST ANY MONEY.

Pat, August 25, 2013 1:33 PM

It can be either

The syndrome is called Down's syndrome or Down syndrome. It can be either one.

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