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A day at the zoo: one mother's quest for normalcy.

Sam is stirring. I know even before I enter his room that he will be content. This is something I can count on. Consistency is important to me in this life where I understand so little. Two-and-a-half years and no diagnosis, no prognosis. Some things we now know, but the "whys" are still there. A flood of emotions crop up. They always come in unannounced. Sometimes I push them down because the time is not appropriate, sometimes I let them come. As painful as they are, they are a part of me.

Yes, Mrs. Thacker, your son is blind.

Other times:

The cerebellum has developed too far down in the spinal cavity... surgery or paralysis or death;

Some kind of metabolic disorder, I'm sorry I can't give you a prognosis and promise you he will live. We have to wait and see;

It appears the metabolic episodes have caused him to have cerebral palsy...

It's one of those busy days so I push down the feelings for now. They'll be back...

I steal into his room. This is the only time of the day I do not announce myself to him, and I do it selfishly. I sit on his brother's bed and watch him greet the new day refreshed. I say a prayer as my heart draws out in gratitude for him and for what he has given to my life. Quietly and slowly I begin to sing, "It's a brand new day today..." Already he smiles from ear to ear. I continue: "The birds are singing. The sun is shining. The kitty is ready to play.." He tries to kick his legs but they scissor and bump into each other. He waits in anticipation for me to announce, "Happy New Day, Sammy," and ask, "What will you do with your new day?" Then we will discuss the plans for the day. Although he cannot talk, his enthusiasm is contagious.

The day has truly begun and we will be filling it with wonderful activities that families do in the summertime. We have set a goal to live a "normal" life for the summer. Sam's activities have been reduced to achieve this. The teacher for the visually impaired does not come in the summer months and at two-and-a-half, Sam is a school dropout.

Actually, we have an option of center or home visits during the summer through the infant stimulation program. We have worked hard this year. Now it is time to do normal things. Since Sam's health is fragile, we choose to cut back on his activities to save his strength for more family outings. We will have home visits for the summer months. At first I worried that Sam needed the socialization at the center. Then I realized that with four children in our home he has a very active social life right here. We will continue with physical therapy

Today we are going to the zoo. I first must give him some time in his stander and do his exercises. I don't need to be concerned about getting him in his chair for positioning before we leave. His chair fits into his stroller to act as a wheelchair and today he will be in it at the zoo. I pack his food, diapers, bibs and cloths to attend to his problem with saliva. I put on his leg braces and hand splints.

Finally, we pack up the car and are off for an hour drive. Sam loves these times in the car with the family. He loves the interaction and animated conversations. I think of how this is good language development and realize that most mothers do not think in these terms.

At the zoo it takes us a while to unload the car, get his chair together and position him in it. I look at my watch and hope we can schedule things just right so that he needs to eat when the rest of the family is hungry. He has stomach problems and has to eat small amounts frequently at regular intervals. To feed him at a time other than when the family is eating will mean a half-hour wait until we can move on to the next activity.

I see a child in a stroller, younger than Sam, with a corn dog in her hand. I am reminded of how my life is not normal. I glance at Sam. He is smiling about the sunlight warm on his face as we come out of the shaded tree area. The corn dog isn't important.

Sam cannot see the monkeys. I tell him about them and I make a monkey sound. His brother and sisters all make the sound too. We look a little strange, but Sam is enjoying the day No, we are all enjoying the day. I also explain about the poisonous snakes in the reptile house to my son, about endangered species to my daughters, and why some flamingos are more pink than others to anyone who will listen to me. Sam is not the center of the universe. He is part of it.

We have made it to the concession stand. We order hot dogs for everyone but Sam. He will have a jar of oatmeal. It takes him a lot longer to finish and the other children are restless. We are in close proximity to the bears and my husband takes them to look for grizzlies until Sam is done. Sam and I discuss the bears. I tell him they are furry like kitty and bigger than Daddy and go GRRR. This amuses him to no end. The oatmeal is gone. I clean him up and we go on to the elephants now.

K-thunk. I look down and the wheel on the stroller has broken. Looking at it, I wonder what we will do. My husband decides that he will carry Sam. He says Sam's head was starting to droop in fatigue anyway. I pick up the pace through the zoo. The day is hot now and with the stroller broken, Sam will begin to feel heavy soon. I am frustrated. I do not wish to cut the day short. I do not want the other children to feel cheated. I wish I didn't have to wait till we go to the clinic to order a wheelchair that we really need now, or fight for the one we want to have, or have to wait months for it to be made. I hate that we are going to have to purchase a new stroller to get us through the summer, and that purchase will mean a sacrifice somewhere else.

I see a mother pushing an empty stroller with her toddler running alongside her. She is trying to get him to slow down. I hate the way I feel toward her. Why can't I have a normal day? I look at Sam. His father is singing Jumbo Elephant and Sam is laughing heartily. I sigh. And smile. It is hot, and the day has been fun. The children are beginning to get cranky and will probably welcome the air-conditioned ride home. Cutting the day short is starting to sound like a good idea. I didn't like the old stroller anyway Maybe we can find one that will be easier to steer.

Later that night when the house is beginning to still, I rock Sam to sleep. I reevaluate the day and our goal of normalcy. I am enjoying the summer. After a rough and scary start, it is fun to just be with Sam as part of the family, for however long it may be. I come to realize that this life may not be normal by the world's standards, but it is normal for us. And it is good.

Stacey B. Thacker attended Brigham Young University and now lives in Merced, Calif., with her husband, John, her children Andrea, 10, J. D., 8, Karen, 6, and Sam, 3, and her niece, Tammy, 17. Mrs. Thacker is a parent advisor for Challenged, which is a support group for parents of physically, mentally and medically-challenged children, a cub scout den mother, and a member of The Church of Jesus Christ of Latter-day Saints. In addition to all this, Mrs. Thacker is a "Full-time Mom."
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Title Annotation:trip with handicapped child
Author:Thacker, Stacey B.
Publication:The Exceptional Parent
Date:Jul 1, 1991
Previous Article:I steal hearts.
Next Article:Looking to the future - life goes on.

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