Being a Kid: Living with Rett Syndrome

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My daughter, Lucy, is almost three years old, and has Rett Syndrome. It is a debilitating condition that has robbed her of speech, the ability to walk, control her hands, and talk. This makes it difficult to figure out how to let her explore the world as every other child does. When I was a little girl, I spent most of my time outside, playing with my cousins. We did all of the things little kids do: rode bikes, caught tadpoles, made forts, pretended we were getting married with bouquets of ferns, played in the mud and in brush piles, rode four-wheelers, swam … you get the point. We lived right beside each other, our moms knew we were safe and so we were just set free each morning and required to return home for meals. It was just the best.

 

Lucy can’t eat a snack, or look at a book, or color without someone else’s help, usually mine or her Daddy’s.  There are actually very few things she can do without assistance, and this breaks my heart in so many ways, but one way in particular is that she can’t just be a “kid” and do the silly things kids do. It is her right and it has been taken away from her because of Rett Syndrome, so I spend a lot of time wracking my brain about ways I can help her to still do things that kids like to do, but especially things that I like to do and that I want to share with her and pass on my love of.

 

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At the beginning of March I flipped the calendar page and the picture was of an adorable duckling. I told Lucy how I love ducklings and maybe we would get some someday and about a week later she used her PODD communication book (click here for more information on the PODD) to say, “I have an idea, buy ducks now”! It was the first time that she has asked me to buy her something! So Lucy got ducklings. I already have a small flock of chickens, so we are familiar with the care required of baby birds. Together we named them Lucky and Ping. She can’t really hold them because of her lack of hand functioning and constant stereotypic hand movements, but she pets them, looks at them, and we even started a little “book” about them. She is the author of the one line in the book and it says,  “I like them, soft. Thank you.”

 

Lucy and I planted a small container of lettuce, spinach, and arugula to make our own salads.  I mixed all of the seeds together in an old spice container and then used a wrist band to help Lucy hold on to it and sprinkle the seeds into the pot. She said, “I like this, special, favorite, garden.”

 

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Lucy can finger paint, and she uses a special cuff to hold a crayon. One day, she said she wanted to help feed herself more, and she is slowly, carefully learning to walk. I helped her make beautiful valentines to give away this year and she did most of the “work”. Sometimes she pretends to be a superhero (Tooty McScooty 2.0 is her crime fighting name) with her Daddy, and she flies around the room. I love every second that we spend together, even the challenging ones, but all I wish for her is to be free of me. I wish she was free to say everything that comes to her mind right when she thinks it, and I wish she was free to run away from me when I tell her to hold my hand. I wish she was free to be silly, and mischievous, and to explore this world that she knows so little about in any way that she sees fit.

 

I feel so envious when I hear or read about all of the amazing things other parents can do with their children. I feel envious not that they do them, but about the ease with which they can do these things, because even though it is difficult and challenging, and is always outside of that darn box, we still do those things that I want Lu to experience. And we will keep doing them. It’s just a matter of brainstorming, patience, and bravery.

 

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About Julie Shaffer

My name is Julie Shaffer and I am a stay-at-home mom. It is the greatest job I have ever had. I write about Lucy because she is amazing, and I want the world to know about her. She defies Rett Syndrome every day with a smile on her face.

Please feel free to visit my regular blog at: www.understandinglu.blogspot.com

For more information on Rett Syndrome visit: www.rettsyndrome.org