My daughter, my teacher.
When my little girl, Amanda, was born almost six years ago with several congenital anomalies, I was completely and utterly overwhelmed. To those around me, I appeared strong and in control, but inside I was filled with shock, disbelief, fear and anger.
Mandy's condition, VACTERL association, involved a number of medical problems, including kidney and spinal defects, but I was so concerned with Mandy's arms that her other conditions seemed to pale in comparison. She was born with a very short left arm, a very small left hand with only two fingers and a short right arm with no thumb or radius (the long bone on the thumb side of the forearm that would have normally extended from elbow to wrist). I was devastated by thoughts of my beautiful little girl being ridiculed and ostracized because of her physical differences. Would she have friends? Would she date? Would she go to the prom? Would she be able to marry and have children?
What about the rest of the world?
From a very early age, Mandy showed such spunk and determination that I learned not to worry about her physical abilities. Whenever I tried to "teach" her to do something, she always found a way to do it better. I soon realized that the best way to help my daughter was not to help, unless she asked.
Eventually, I rarely even noticed Mandy's short arms, but I knew they were the first thing other people saw. I saw Mandy as the wonderful person she was--loving, smart, funny and beautiful. But what about the rest of the world? How were they going to treat my child?
I loved my daughter with every fiber of my being, and I wanted to protect her. I wanted to protect her so badly that I considered homeschooling. Mandy had been around other children before, but I had always been there to help her handle their questions and stares. At school, she would be on her own. She's not ready, I kept telling myself. They'll tear her apart and break her spirit.
But Mandy was eager to join her big brother at school. She wanted to make friends and play at their houses; she looked forward to birthday parties and all the other fun activities her big brother got to do.
I really had no choice but to let her go. I prepared her as best as I could, trying to explain what might happen and to provide her with responses to the questions other children might ask. Mandy's first day of school was very exciting for her, but it was the hardest day of my entire life.
When we got to the school, I brought Mandy to her classroom and waited with her while the other children started to arrive. Almost immediately, they began to gather around her, trying to touch her arms, innocently asking, "What happened?" and "Does it hurt?"
My stomach tied in knots. I wanted to grab Mandy, run out the door as fast as I could and never return. I prepared myself for the tears I was sure she would shed and knelt down next to her so I could help explain her differences. But I never got the chance. My daughter simply announced, "That's just the way I was born."
That statement was all that was needed. The children began talking about other things, and it was clear that Mandy had things under control. Still, I told myself, they are all very young. Acceptance won't always be this easy. I walked out of the school sobbing because I was so proud of my daughter, but also because I was still so very afraid for her.
Growing and learning
Mandy's first year of school went well. A few times, Mandy seemed bothered by people's questions--mostly, I think, because she tired of them--but for the most part, her school experience was very positive. She made lots of friends and had many invitations for play dates. Her active social life soon grew to include Daisy Girl Scouts and therapeutic horseback riding lessons.
But I still worried. I wondered if Mandy realized the obstacles she would have to face in the future. Maybe we had loved her so much that we had wrongly sheltered her from the attitudes of others. I feared that she didn't understand that her arms would always be the way they are--that they wouldn't one day "finish" growing. Until today.
Mandy stood in front of the stereo this morning, looking at her reflection in the glass door. I didn't really think anything of it; she had seen her reflection many times before. This time, however, she started crying. When I asked why she was upset, she explained that she was afraid that when she grew up, she would look "silly" with her "little arms."
I struggled to keep my composure. I hugged her and told her it would be okay. I told her she could do just about anything she wanted to. I babbled on and on about how how her small arms wouldn't stop her from fulfilling her dreams. Then, finally, I stopped talking long enough to actually listen to her, and I realized what she meant.
Mandy thought her arms wouldn't grow in proportion to the rest of her body! So I explained that they would. I showed her some of her baby pictures, pointing out that as she'd gotten bigger, her arms had gotten bigger as well. "And as you continue to grow," I said, "your arms will grow along with the rest of your body." I hesitated, and then added, "But your left arm will not grow as long as your right, and you won't grow any more fingers."
Mandy straightened up and proudly said, "Good! I don't want any more fingers. I like my hands just the way they are!"
Thank you, Mandy, for teaching me what you knew all along. I don't need to worry about you or pity you. I will save my pity for those who don't know how to accept differences and who might miss out on knowing someone as beautiful as you because of their own misconceptions and attitudes. Like me--before today--they are the ones with the problem, not you.
Mary Jane Kitchens lives in Ann Arbor, Michigan with her husband, David, daughter Mandy 6, and sons Joshua, 8, and Jacob, 4. She works part-time, volunteers at her children's school and assists with Mandy's Daisy Girl Scout troop. David works as a glass installer at Brad's Mobile Auto Glass. Mandy, who has VACTERL association, attends morning kindergarten at Eberwhite Elementary School in Ann Arbor. She loves to draw, swing on her swing set and cuddle with Dancer, her cocker spaniel.
VACTERL association is an acronym for several congenital anomalies that often appear together: (V)ertebral anomalies, (A)nal atresia, (C)ardiac anomalies, (T)racheo(E)sophageal fistula, (R)enal anomalies, radial dysplasia and other (L)imb anomalies. The TEF/VATER Support Network (c/o Greg and Terri, 15301 Grey Fox Rd., Upper Marlboro, MD 20772; 301/952-6837) provides information and support to families of children with VACTERL association and/or birth defects associated with the esophagus (the tube that carries food from the throat to the stomach). The organization offers parent matching services and publishes a newsletter and family directory.
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|Title Annotation:||mother learns to let go|
|Author:||Kitchens, Mary Jane|
|Publication:||The Exceptional Parent|
|Date:||Sep 1, 1996|
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