When my mother was pregnant, I was so excited I couldn't see straight. I thought a new little sister would be so exciting. I envisioned myself doing all sorts of big sister things with her. I couldn't wait for her to be born!!!! I was in for a tough surprise! My sister Rebecca has Rett Syndrome, a neurological disorder that occurs only in girls. Development is normal up to about 6-18 months of age but then things go downhill. That's what it was like for Reba. She sort of went backwards, losing purposeful use of her hands, and developing almost constant repetitive hand movements. Her intellectual development is severely delayed, too. 

Endless hours of screaming and crying is enough to making anyone crazy...and Reba did that for over six months. We used to take turns walking with her around the house, singing to her, doing our best to try to calm her down. Nothing worked. I got mad, upset, angry, hateful and resentful of her and of my family. It wasn't fair! 

After much heartache and grieving for the 'normal' sister I would never have, I realized that things were not going to get any better for her unless we all helped, including me. I wanted Reba to have as 'normal' a childhood as any other child. I began to notice how ignorant people could be towards those with disabilities and how much I hated that. I wanted my sister to feel like she was loved, not pitied because of her handicap. 

I think what really helped me get rid of the anger was spending time with her. I used to get this feeling of guilt when I was around her 'cause I was normal and she was not. Finally I realized that how she was acting was actually normal for her. She knew no other life than listening to music, watching TV, grinding her teeth, and just being herself, different from the rest of us. I found myself missing her during the day while I was at school, even though I guessed that she was at home screaming, which she did a lot. I gradually started spending more time with her and we became inseparable. I would come home from school and walk the floors with her while she cried, singing songs and rubbing her back. It was so frustrating, since she couldn't tell me what was wrong. 

Amazingly, after about a year and a half of this, she actually appeared to be happy. After that big transition, I felt that I could face anything. I knew that we had made it over one hump and she was on her way to 'the next level'. I discovered that underneath all those tears and hollers was a beautiful little girl. Just the smallest smile on her face or a the tiniest of laughs was enough to make my day. 

Soon enough, people noticed that things were wrong with her. She looked like any other little 3 yr old girl, but when she got her hot pink Zippie Wheelchair, people looked. I never once let people look 'down' at me or look 'weird' at her 'cause of this. I'd look straight at them and smile. This would often make them feel uncomfortable and look the other way. 

I spend my evenings with Reba until she goes to bed. Weekends we like to hang out, watch movies, go horseback riding, and play while she is in her stander. She likes to have her toe nails polished, she likes to be 'roughed' up like any other 6 yr old would and she likes to be talked to. My favorite thing to do with her is climb up in her bed and just hold her and tell her stories of when she was growing up. I tell her my problems and she listens. 

Nowadays, I do the silliest and stupidist things just to see her smile and laugh. She has the most precious little giggle. Since she doesn't walk or talk she has great eye contact. I personally think a person's eyes speak for themselves anyway. She is very alert and happy -- most of the time. She goes through her Barney withdrawals every now and again, but I've learned to find the old purple guy for her, and she thanks me with a smile or a giggle. 

The saying in our family is "To know me is to love Reba." Ah, my family! My family was most important in this journey. We leaned on each other, wiping away tears and surrounding each other with constant support and love. 

Living and loving Rebecca has taught me so many things. I've learned how to be patient, understanding, caring and how to love fully. I've also learned to take time for the little things in life, like looking at the trees and watching the leaves blow (One of Reba's favorite things to do!) She is my little angel and I love her so much, and to my amazement, I love the life I have because of her...I would never trade it in for anything else!! I learned that when in life we're faced with challenges, we should deal with them the best way we can, we should take time out for ourselves, and we should never give up!


Update: Reba is getting so big, I'm astonished!  She's nearly 10 years old and I'm nearly 26. Time sure does fly by! She recently went to Baltimore, MD, to participate in her second round of study groups for girls with Rett Syndrome.  This coming summer, sad to say, she will be having her back operated on.  The curvature of her spine from scoloisis has her at a 40+ degree curve.  Doctors are going to fuse her spine and put metal rods in to help stop the curving.  It is 
going to be another very difficult hurdle for our family to jump, but with love all things are possible. 

I spent a very relaxing and wonderful week with my parents and Reba in MN last year.  It had to have been the best week of my life.  We had a blast laughing the night away during our bonfires, or just being silly and cuddling together watching Sesame Street.  The love I feel for her is so strong that I cannot find the words to express it!

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Fairfield University
Fairfield, Connecticut 06430

Last updated: September 23, 2002