The night before my daughter Leigh was born, I had this reoccuring dream. There was this road that was both inviting and scary at the same time. I t was a narrow dirt road with overhanging branching creating dark, shaded areas. But where the sun shone through, it was as if I had traveled down it a million times but was holding back, afraid to enter. Almost as if once I turned down that road, there would be no way to return. The next day, between hard labor pains, I closed my eyes and must have fallen asleep because I saw that road again. I woke up with a start and found my husband, Harris, by my side with a strange look on his face. he told me that I had cried out in my sleep. "Please God, not me."
Leigh was my second child and my pregnancy always felt awkward-a bit different. It was a long, hard birth. I had expected to go home after two or three days, but tests were still being run on Leigh and I didn't want to leave without her. On the fourth day-the day we were supposed to go home-the nurse came in holding a plastic cup with a pill. She told me I needed to take it. When I asked what it was for, she didn’t really answer me. I thought it was a pain pill for the drive home. It was a sedative.
Later, Harris came to my room and by the look on his face, I knew something had happened to my baby girl. “She’s dead. She’s dead isn’t she Harris? Just tell me. Oh please don’t let her be dead.” He wept at my side.
The irony of the situation, as well as the shame, is that for the briefest of moments, I wished she had died. That’s so hard for me to say now, but I understand that this occasion is not to just tell my story, but to come to grips with the truth. Which is something all parents of special children have a difficult time doing.
One day when Leigh was in third grade, she bit a little boy. It happened that it was another teacher’s son, so she was very understanding. But they sent papers home for us to sign that gave them permission to administer corporal punishment, not that they wanted to spank her, but they wanted some leverage to make her behave. We signed them and we made her sit in time out for a long time-close to an hour. Harris finally said, “Okay, Leigh, you can get up now.” My girl spread her arms out and hugged her daddy around the legs and said, “I’m free. I’m free. I’m free. I’m free.” So we didn’t figure the punishment worked too well.
Then I found out that when she bit this little boy, the took her to the principal and he said, “Now Leigh, we can’t bite people. That’s not correct behavior and we can’t do that in school because we’ll get punished.” And she said, “Oh, I like chocolate ice cream and spaghetti.” And he realized that he didn’t have her attention, so he said, “Now Leigh, we can’t bite. We have to be good and all boys and girls have to get along.” He continued to talk to her and she would interrupt occasionally and she would say, “I like pizza and french fries…” she was totally ignoring him. Finally she looked him straight in the eyes and said, “Oh Mr. Hunt, I love you.” Mr. Hunt gave up.
Leigh’s now 16 and a student where I teach. She still calls me mommy, but only when others aren’t listening. She wants to be independent so I often see her pass my room with a book hiding her face, thinking that I won’t see her or know who she is.
She still believes in Santa. Just the other day, she saw a gentleman and he is very much a Santa-looking figure. Although he was just in every-day clothes, Leigh stopped him and said, “I just want you to know that I have been a very good girl this year. Mhmm. Yeah.” At first, he didn’t catch on and the she started giving him a list of Christmas presents. Now when he see her, he knows his role and plays it well. I’m always so thankful for people like him.
We talk to Leigh about being a teenager, about kissing, about sex. We hope she understands. Just last week, she was saying her prayers and I noticed that she always prayed for her older brother Frank, for mommy and daddy, and for herself, but that she had sopped praying for her nine-year-old brother John. When I said, “Leigh, why don’t you pray for John anymore?” With all seriousness, she said “He’s not a teenager.” I guess John didn’t need prayers yet, huh?
Leigh and I argue. She is stubborn, very stubborn. The last time we argued, it was over wearing some really awful shorts to school. She decided to pray at the breakfast table and her entire prayer was about me. “Dear God, please help my mother not be mad at me ‘cause I love her so much. When she is mad, I’m sad. God, let her know it’s okay that I wear my shorts to school today. Amen.” She knew what she was doing.
My Leigh is both savvy and naïve, smart and challenged, tough and breathtakingly fragile. She is ours to protect, to love, and to gently guide through life. This road, this path that I dreamed about? I stepped into both the shadows and the sunlight. Along the unknown path, I’ve held Leigh’s pudgy hand in mine. I’m not sure when the journey will end, or where the road will take us next, but I’ve been willing to travel it. I’m still a little afraid, especially when I think about the time when this journey will end. It’s inconceivable that there could be a world without my girl.
My hope is that you will take away one thought. These children who look, talk, and walk differently are special. Don’t gawk at them. Don’t feel sorry for them. Don’t turn away in disgust or pity. Just accept them for the truly special people they are.
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