My Sister, My Friend, Myself

During a trip to Chicago last month, I spent time with one of my best childhood friends. Back in the day, we enjoyed playing with Barbies, swinging at the park, competing in “running bases” in the alley, watching TV (especially “Medical Center,” “The Partridge Family” and “Julia”), making trips to the neighborhood candy store and cataloguing our baseball cards.

Now, we can barely converse. She wears false teeth and two hearing aids (only one of which is barely operable); carries dozens of extra pounds on her less-than-five-foot frame; sleeps through much of the day; and eats, talks and walks very slowly. In many ways, she seems like an old lady, although she’s in her early 50s.

She’s my older sister Jean, and she has Down syndrome.

I often tell my kids stories about Jean from my youth, to give them a glimpse of the adorable, vivacious, funny, hard-working girl that I called “twinnie” (for twin) or “Neenie” (for Jean, as she called herself). They love hearing how, after my mom realized her sweet child was scamming cookies off of neighbors, Jean had to wear a sign around her neck that read, “Please don’t feed me.”  Jean dutifully donned the sign every time she left the house.  Apparently I was so jealous (and unable to read the sign), I begged my mom to make one for me, too. (That’s us in a photo from that time; Jean is on the left.)

My kids laugh when they hear how Jean and I played for hours in a hotel pool, then dried our long blond hair in the sauna, effectively baking in thousands of snarls and rats’ nests. It took my mom most of an evening, and several snips with the scissors, to clean up the mess.

On family vacations, the six of us kids paired up: our oldest two brothers, an older sister and the youngest brother, then Jean and me (although in the birth order, she was two places ahead). It was always us two in the back of the station wagon; us two sharing hotel beds; us two in the pool, on the bunny hill and in the row boat.  For many years, Jean was my partner in fun and crime, and when people asked why she seemed different, I replied, as coached, “She’s special.”

I make sure my kids know that my special sister learned how to read, write and understand simple mathematics, rode her bike around town, swam like a whirling dervish, skied with the family, knew stats for every Cubs player (she still does), hung out with the crowd at her siblings’ high school parties, and, in her 20s, became “Employee of the Month” at the department store where she cleaned glass display cases and mirrors.

What I haven’t told my kids is that for a while, when I was in middle school, I was embarrassed of my sister. Somehow, I believed her retardation was a negative reflection of my family, or of me. I stopped hanging out with her. On family trips, I asked not to be partnered with Jean any more. She had a best friend from school and a part-time job in a junior-high cafeteria, and we more or less went our separate ways.

I did regret the loss, and tried to recover lost ground on weekend visits while still single and living in NYC. However, since marrying and having kids, I have found it difficult to focus on Jean during my rare and complicated trips “home,” where I need to balance time with family (especially my three nieces) and old friends. Managing my four little ones, as well as my husband, and making sure they all stay on time, on task and out of trouble keeps me plenty preoccupied.

Now, with 2,000 miles between us, the impossibility of phone calls and only short, occasional visits to Chicago, it’s difficult to relate to my sister, my former best friend.  However, I feel nostalgic about our early years together, and recognize the impact Jean had on me. As the author Toni Morrison once wrote: “A sister can be seen as someone who is both ourselves and very much not ourselves – a special kind of double.”

In Carol and my book (called Permission Slips, as is this blog), we provide solid research suggesting that female friendships are a critical component of one’s health, balance and renewal. We urge frazzled women—especially moms with young children—to give themselves permission for breaks and time with friends.

I’m struggling to determine what “permission” I’m seeking regarding Jean.  Is it permission to let go of a former friend, permission to stop feeling guilty about a relationship untended or permission to spend time and money away from my nuclear family, in order to resurrect a bond long severed?

I’ll keep you posted.

–Linda Williams Rorem, 1 Aug. 2011


  1. Marilyn Williams says:

    Thanks to her brothers and sisters, maybe Linda most of all, Jean had the best childhood imaginable for one with Downs syndrome fifty some years ago. This involved some sacrifice and a bit of embarrassment on the part of her sibs, but I hope it was not too much to bear, and that the compassion and awareness that resulted ultimately outweighed the negatives.
    Later, countless others helped Jean achieve an amazing amount of independence and productivity as a young adult. Unfortunately, the advantages did not last forever. But Jean is well cared for, has friends, and receives all the stimulation she can handle. She has her own life, as does everyone else in the family. No one needs to feel guilty.

  2. This is a beautiful post… My oldest daughter starts middle school this week and has 2 little sisters with Down syndrome… I often wonder when or if the sisters she currently adores will ever change in her eyes. I hope you get the clarity you seek regarding Jean. I’ll be back to see what you decide. Thanks for stopping by our blog! 🙂

  3. What an insightful post. Thanks for stopping by Braska’s blog, and thanks for bragging on your sister! I don’t think there can ever be enough examples available to truly share the gift that is our loved ones with DS. Mine is interrupting my computer time right this minute to ask, “Mommy, please can i hold you? Wanna get comfy cozy.” Meaning that she wants me to hold her in the rocking chair and cuddle up with her blanket while we watch Sesame Street. So please excuse me now…..Priceless.

  4. Thanks so much, Traci. As you well know, relationships can be both complex and sustaining. I’m grateful for all of my siblings, but especially for Jean.

  5. Traci Brandon says:

    Great post, Linda. It brought me to tears!

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