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About using this material... I realize that once this is posted on the web, it becomes available for others to use. As a courtesy, I ask that you give me my due credit by leaving my name and copyright info on all pieces. It may be used as a free hand-out for parents or professionals but may NOT be used in any publication that anyone (especially parents) has to pay for. If you would email me to tell me how it is being used, it would be appreciated. Thanks! and I hope you enjoy the site. Pat
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The AnswerGood-Bye HawaiiWhere Am I?.... Who Am I?
The AnswerI'm always looking for the answer. If I could only have someone give it to me, I'm sure life would be simpler. But as I sit here typing away, trying to figure this out, I realize that the answer will always elude me. Am I saying that there is no answer? No, it's not that at all. The problem lies in the question. And the question keeps changing. Take the question that all parents who have children with problems ask. "Why me?” I asked that question a lot. I asked it until I was hoarse. I dreamt about it. I had nightmares about that question. I begged to understand the reasoning behind the decision to give these children to me. Then one day in the grocery store as people tried to unobtrusively (but unsuccessfully) get a really good look at my youngest to see if she was really blind, another question replaced the original. "Why not me?" As I wheeled my way down the aisle, glancing at products on the shelves and singing nonsense words to my daughter, I knew that there was no-one else in the world who could love this little baby as much as I did. There was no-one else who would feel so defensive and protective. If she had to be shielded from these rude people, I would do it and I would do it better than anyone else. Then there was the day not too long ago when she got those little hands on my face, held it still and zoomed in until we were nose to nose and asked, "Why do you leave us at a babysitter's and go teach STEP classes?" "Well," I replied, "I go to try to teach other mommies how to be better mommies and to remind myself to be a better mommy." “But you're already a better mommy," she responded. What could I do? A silent tear of gratitude trickled down my cheek. I hugged her tightly. I knew this moment would be filed along with all those other memorable ones that I keep in my heart. This seems like a fitting epitaph for a life. She was a better Mommy. I, the person whose goal it is to have an impressive obituary, would be content with this on my headstone. But why not do more? Why not add to it? I know I keep harping on how our children can make us better people. I know it can be hard for a new parent to realize the blessing they've received when they found out their child may have a disability. So maybe it's a mixed blessing, because they also screw our lives up pretty badly too. They make it harder to go to the grocery store. They make it harder to cope. They make us rethink our whole value system. They make us cry. They make us grow. They keep us on the edge of fatigue. They make us learn to love better. So, for my children and for myself, I will keep trying to be a better mommy. I will also try to be a better person. I will continue to write in the hope that I can help other parents realize that they are not alone with their fears and questions. As I exorcise my demons, I hope to bring to light the full spectrum of emotions we face. Thank you all for reading what I write. Thanks to my kids for raising the question of ‘why me?’ in the first place. I will keep asking it in many different ways and probably for the rest of my life. The day I quit asking will be the day they start writing my obituary.
Good-Bye HawaiiI save everything. I think saving too much is a disorder in its own right, but I don't know what the technical term is. However, even dedicated pack rats like me have to throw some things out occasionally. I just watched the garbage man drive away with enough broken and half-of's to pay for a ten day, all expenses paid, fun-in-the-sun vacation in Hawaii for two. Those of you who live with children who are hyperactive or who have attention deficit disorder will have no problem understanding what I'm trying to say here. You probably have your own lost vacation. My oldest, who has a diagnosis of high functioning autistic, has also been diagnosed at one time or the other as ADD/hyperactive. She's eight years old now, so we've accumulated quite an impressive "collection" over the years. There are at least three pairs of cracked, scratched or broken contact lenses, thirteen tangled or broken necklaces, eight or ten containers with eye shadow that had been used as water colors and one broken figurine of a Doberman that my sister paid a bundle for. There are also four or five pairs of panty hose that were transformed into puppets before ever being worn, eighteen single socks, twenty-seven mutilated earrings, six boxes of broken crayons and fourteen unwound audio cassettes. Not to mention the 35 millimeter camera that she washed, or the brand new box of computer disks with the pancake syrup on them. Let's not forget the baby doll parts, the broken vases, the torn sheets or the cut up books either. If I had thrown all this stuff out as it was destroyed, it wouldn't seem such an enormous amount, but I always meant to fix it or find alternate uses for the "halves". But somehow, I never got around to doing those things. Even as I watch the garbage truck drive away, I catch a glimpse of my daughter swinging from the clothes line in my backyard. Hawaii would be nice, but she is worth it all. I haven't had to repaint any rooms for the last year. (Probably because all the magic markers have been destroyed.) The sound of breaking glass is heard less often and the progress she has made is remarkable. Maybe I should encourage the artwork. She may grow up to be a famous artist and she may send me to Hawaii one day.
Where Am I?... Who Am I?Where am I? What are all these tubes for? Who are all these people?
The machines! Am I someplace in the future? Is this what happens
when you eat anchovy pizzas before bed?
Dear God, Please,- please, please. I'm begging you. Don't let her
die. Please let her live. How can these young kids be doctors? Why are they so rude? Why won’t they give me straight answers? Hey, it’s worked so far, acting like I’m in control. But don’t they know I NEED to cry? Don’t they realize I can’t keep this all inside? But if I do, they’ll make me leave and I want to stay with my baby. She’s so tiny and helpless. Look, she’s gained a silly millimeter! Hold on there. Laughing is as dangerous as crying. They’ll think I’ve lost it. What is the proper protocol here? Can anyone tell me how I should act? Can anyone understand? These doctors act as if I’m invisible. Please, just explain what that means, Just once. I’ll go home and look it up and I’ll never ask again. Just please, tell me in English. She’s MY baby! Here comes that nice vent person. I’ll be able to find out more from him than all these other people put together. He acts as if I have a brain. Everyone acts as if I’m made of glass and will break any moment. Don’t they know I shattered a long time ago and I’m still functioning? Trying to always be in control only makes it harder, but everyone shies away from the slightest indication of tears. Can anyone understand? Can anyone understand? I want to wake up. I don’t want to be here and my name isn’t Alice. |
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Pat Linkhorn, 2001