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Featured Contributor Tina Marie McGrevy
Christmas on Alert
by Tina Marie McGrevy
My husband's National Guard Unit deploys for Iraq the first week in January. As it is, ordinary life is already challenging because our son was born with Smith-Magenis Syndrome. So much so, that usually it is easier to stay at home than to take the chance of a meltdown. However, a good friend gave us a five day stay at the ocean when she heard of Charlie's upcoming deployment.
"I don't know about taking Garrett out of his schedule," I fretted to Charlie. "It is such a long drive. We can't eat in a restaurant. What if he tries to leave the room at night?" I continued with a very long list of good reasons not to attempt the likelihood of an unpleasant vacation. Charlie, on the other hand, had only one argument.
"I won't be here next summer." So we went. We brought along the portable TV and a stack of Barney DVDs. I wrapped a flashlight, stickers and books in tissue paper to be opened every fifty miles. We bought a Mickey Mouse pop-up tent that was "Garrett-proof" and we put the tent next to our bed. Garrett was still in it the next morning. We continued living on "The Schedule," as if we were home. And all three of our sons had their first vacation.
So, in the weeks that followed, we became more adventurous. Although we had to leave the county fair after thirty minutes, we were able to spend the entire day at the aquarium "riding" the escalator. We were able to eat lunch at Wendy's because they have chocolate milk, strawberry yogurt and a "present" at the bottom of the bag. But we still cannot eat at most family restaurants because Garrett explodes when a waitress places the food on the table. We can go to Wal-mart because there is always someone waiting at the door to shake Garrett's hand and say "Hello". However, the grocery store has a balloon stand at the entrance which Garrett cannot even be bribed to walk past.
But six months ago, the aquarium, Wendy's and Wal-mart were off-limits. Today, we head off to these places the way most families journey to Disney Land. The Alert has given us our "what have we got to loose" attitude the way Smith-Magenis Syndrome cured us of the emotion "embarrassment."
Now, we are approaching Christmas with the same gusto as our summer. I am finally going to buy a potted spruce tree that I can plant in the yard next spring. It's the start of my Christmas tree lined yard that I have talked about for years. Although it has the potential of danger, we are going to string popcorn and cranberries for the 2007 McGrevy Tree. I have purchased red and green construction paper to make a Paper Chain Garland. I will just wipe up the glue and sweep the paper scraps without as much as a sigh.
Despite the probability of unsolicited "help," I will bake the cookies before the boys are in bed. I will even let them help spread the icing. The possibilities are endless! I may even bring out the applesauce and cinnamon for ornament production.
And, this year, Garrett will be doing his own Christmas shopping... at Wal-Mart, of course.
Tina McGrevy and her husband, Charlie, live in Springfield, Ohio, with their three sons: Garrett, diagnosed in 2001 with SMS, Patrick, and Brennan. Now in second grade, Garrett is reading at a level that seemed impossible six years ago. As Garrett's speech skills improve, a talented comedian with a unique sense of humor has emerged. Tina has a degree in education, but enjoys staying home with the boys and writing about their adventures. She dreams of following in the footsteps of another Ohio Valley mother, Erma Bombeck."
To learn more about Smith Magenis Syndrome please visit www.prisms.org
by Tina Marie McGrevy
My husband's National Guard Unit deploys for Iraq the first week in January. As it is, ordinary life is already challenging because our son was born with Smith-Magenis Syndrome. So much so, that usually it is easier to stay at home than to take the chance of a meltdown. However, a good friend gave us a five day stay at the ocean when she heard of Charlie's upcoming deployment.
"I don't know about taking Garrett out of his schedule," I fretted to Charlie. "It is such a long drive. We can't eat in a restaurant. What if he tries to leave the room at night?" I continued with a very long list of good reasons not to attempt the likelihood of an unpleasant vacation. Charlie, on the other hand, had only one argument.
"I won't be here next summer." So we went. We brought along the portable TV and a stack of Barney DVDs. I wrapped a flashlight, stickers and books in tissue paper to be opened every fifty miles. We bought a Mickey Mouse pop-up tent that was "Garrett-proof" and we put the tent next to our bed. Garrett was still in it the next morning. We continued living on "The Schedule," as if we were home. And all three of our sons had their first vacation.
So, in the weeks that followed, we became more adventurous. Although we had to leave the county fair after thirty minutes, we were able to spend the entire day at the aquarium "riding" the escalator. We were able to eat lunch at Wendy's because they have chocolate milk, strawberry yogurt and a "present" at the bottom of the bag. But we still cannot eat at most family restaurants because Garrett explodes when a waitress places the food on the table. We can go to Wal-mart because there is always someone waiting at the door to shake Garrett's hand and say "Hello". However, the grocery store has a balloon stand at the entrance which Garrett cannot even be bribed to walk past.
But six months ago, the aquarium, Wendy's and Wal-mart were off-limits. Today, we head off to these places the way most families journey to Disney Land. The Alert has given us our "what have we got to loose" attitude the way Smith-Magenis Syndrome cured us of the emotion "embarrassment."
Now, we are approaching Christmas with the same gusto as our summer. I am finally going to buy a potted spruce tree that I can plant in the yard next spring. It's the start of my Christmas tree lined yard that I have talked about for years. Although it has the potential of danger, we are going to string popcorn and cranberries for the 2007 McGrevy Tree. I have purchased red and green construction paper to make a Paper Chain Garland. I will just wipe up the glue and sweep the paper scraps without as much as a sigh.
Despite the probability of unsolicited "help," I will bake the cookies before the boys are in bed. I will even let them help spread the icing. The possibilities are endless! I may even bring out the applesauce and cinnamon for ornament production.
And, this year, Garrett will be doing his own Christmas shopping... at Wal-Mart, of course.
Tina McGrevy and her husband, Charlie, live in Springfield, Ohio, with their three sons: Garrett, diagnosed in 2001 with SMS, Patrick, and Brennan. Now in second grade, Garrett is reading at a level that seemed impossible six years ago. As Garrett's speech skills improve, a talented comedian with a unique sense of humor has emerged. Tina has a degree in education, but enjoys staying home with the boys and writing about their adventures. She dreams of following in the footsteps of another Ohio Valley mother, Erma Bombeck."
To learn more about Smith Magenis Syndrome please visit www.prisms.org
Other Stories from Tina:
He's the Same Baby
"He's the same baby he was this morning," our pediatrician told me as I held
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Hey Daddy!
"Hey Daddy! Hey Daddy! Hey Daddy!" The sing-song chorus was coming from the car seat behind me.
"What?" my husband, Charlie answered.