Squeaky Wheel
Did I do that?
-- Steve Urkel (Family Matters)
Barbara, the local author I mentioned earlier, invited me and Erik for a visit at her home this week. Unfortunately, she e-mailed me today informing me that she has a terrible cold, so we will not be going out to see her Wednesday morning after all. However, she reported that there is now a volunteer at our church who is eager to help out "in any special way" during one of our Sunday services. She assured me that we can call in advance to make arrangements if we want to attend church and that this woman is available to other special needs families as well. I'm encouraged but a bit perplexed as to why we never got an actual phone call from the office to let us know. Maybe that is coming. After the deafening silence over the last few months, though, you won't see me waiting by the phone anymore. I'm tired of feeling foolish and getting my hopes up. I still can't help but feel optimistic, as wounded and angry as I have felt lately. In the end, it really does not take a whole lot to make me happy. If someone even pretends to care these days, I'm happy.
As the two-year anniversary of our diagnosis approaches and Erik changes by the second, I find myself facing reality in a brand new way. Right now I feel uneasy and off balance. Erik and I have great days separated by a day here and there during which he is equally uneasy and upset. These are days we just don't connect at all. If I hang on long enough, I will feel his arms around my neck and his choppy giggles in my ear again. We visit the orthotist tomorrow to have his orthotics checked to make sure they are not cutting off the blood supply to his feet during this amazing growth spurt of his.
Today I spotted a Goodwill truck by the side of the road with its back end gaping open, ready to swallow donations. I glanced in my rearview mirror and saw the top of the impressive collection of now ill-fitting clothes of mine and toys Erik has no use for piled in the back of my car. I made a split-minute decision, signaling at the last minute like a complete jackass, jerking the wheel as sharply as I could without sliding on the ice to round the corner into the parking lot to an unoccupied patch of snow behind the truck. A middle-aged man in clothing much too light for the weather conditions appeared from the darkness inside the truck's boxy interior and said a quick hello. His cheeks were reddened from what I guessed was a result of the harsh wind and tiny snakes of broken capillaries hinting at a past history of drinking a little too much. I quietly emptied the back of my Jeep, accepted my receipt with a smile, and got back into my seat behind the wheel. I began to drive past the glossy side of the truck which proclaimed, "Your Donation Changes Lives" in giant, white letters. Below this, a man with the familiar features of Down syndrome was pictured hugging a larger, fatherly man very tightly. They both grinned from ear to ear as if they had just enjoyed a silent joke or found out they won the lottery.
I pressed my toes gently against the gas pedal and felt my eyes begin to sting. My heart suddenly hurt. In fact, it felt as if it would split wide open. The ferocity of the pain was almost unbearable. I frowned and slipped my dark glasses on, feeling completely blindsided.
Oh no. Not fair.
You found out your son had a disability almost two years ago.
The reality of it all is crashing down on me like never before. Last year I learned to live with the two words that changed my life that day at the children's hospital in March 2006. I am now completely comfortable with the actual words and the set of words that tends to come with them, at least when I use them around friends and family. I can usually read them on a page or a computer screen without much emotion whatsoever. I thought I was an expert at this.
This year brings another unexpected lesson. Facing what those words really mean to Erik and our family. When I do sleep now, my dreams are strange. They are filled with images of myself as a disabled child being tortured, ridiculed, and teased on a playground. Last night I found myself in another dream wandering the halls of a giant luxury hotel that had no exit, lost and completely alone. I passed numbered rows of locked, slab-like doors as my feet sunk into thick, soft carpet. In the one I had last night, I was in high school, stricken with a nonspecific but horrible disability but keenly aware of my surroundings. I overheard sharp, cruel words pertaining to me and bubbly giggles percolating through a closed door in front of where I stood. I threw the door open and confronted a pair of teenage girls, feeling angry and violent. The last thing I remember before I awoke was staring into their eyes, large as saucers and full of shock. Erik is absent from each of these strange visions, but I know they are all about him and my role as a mother, anyway. It is probably too painful for my brain to place the actual image of Erik in any of them. I am certain that with the passage of time, they will fade, at least for the most part. This is just another step in the process. This year will bring more encounters with people who have WS. Last year I couldn't bring myself to even talk to an adult with WS. I could only manage to shake the strange, seemingly prematurely aged hand of one woman and turn to walk away like a coward. This year I hope I will have the courage and the strength to accept what all of the words I have learned really mean.
This year I hope to gather enough courage to speak. Even the courage to "squeak." This year I want to use the words I have learned with grace in a group of strangers if I have the desire to speak about my child.
This year I hope to stop turning away.
-- Steve Urkel (Family Matters)
Barbara, the local author I mentioned earlier, invited me and Erik for a visit at her home this week. Unfortunately, she e-mailed me today informing me that she has a terrible cold, so we will not be going out to see her Wednesday morning after all. However, she reported that there is now a volunteer at our church who is eager to help out "in any special way" during one of our Sunday services. She assured me that we can call in advance to make arrangements if we want to attend church and that this woman is available to other special needs families as well. I'm encouraged but a bit perplexed as to why we never got an actual phone call from the office to let us know. Maybe that is coming. After the deafening silence over the last few months, though, you won't see me waiting by the phone anymore. I'm tired of feeling foolish and getting my hopes up. I still can't help but feel optimistic, as wounded and angry as I have felt lately. In the end, it really does not take a whole lot to make me happy. If someone even pretends to care these days, I'm happy.
As the two-year anniversary of our diagnosis approaches and Erik changes by the second, I find myself facing reality in a brand new way. Right now I feel uneasy and off balance. Erik and I have great days separated by a day here and there during which he is equally uneasy and upset. These are days we just don't connect at all. If I hang on long enough, I will feel his arms around my neck and his choppy giggles in my ear again. We visit the orthotist tomorrow to have his orthotics checked to make sure they are not cutting off the blood supply to his feet during this amazing growth spurt of his.
Today I spotted a Goodwill truck by the side of the road with its back end gaping open, ready to swallow donations. I glanced in my rearview mirror and saw the top of the impressive collection of now ill-fitting clothes of mine and toys Erik has no use for piled in the back of my car. I made a split-minute decision, signaling at the last minute like a complete jackass, jerking the wheel as sharply as I could without sliding on the ice to round the corner into the parking lot to an unoccupied patch of snow behind the truck. A middle-aged man in clothing much too light for the weather conditions appeared from the darkness inside the truck's boxy interior and said a quick hello. His cheeks were reddened from what I guessed was a result of the harsh wind and tiny snakes of broken capillaries hinting at a past history of drinking a little too much. I quietly emptied the back of my Jeep, accepted my receipt with a smile, and got back into my seat behind the wheel. I began to drive past the glossy side of the truck which proclaimed, "Your Donation Changes Lives" in giant, white letters. Below this, a man with the familiar features of Down syndrome was pictured hugging a larger, fatherly man very tightly. They both grinned from ear to ear as if they had just enjoyed a silent joke or found out they won the lottery.
I pressed my toes gently against the gas pedal and felt my eyes begin to sting. My heart suddenly hurt. In fact, it felt as if it would split wide open. The ferocity of the pain was almost unbearable. I frowned and slipped my dark glasses on, feeling completely blindsided.
Oh no. Not fair.
You found out your son had a disability almost two years ago.
The reality of it all is crashing down on me like never before. Last year I learned to live with the two words that changed my life that day at the children's hospital in March 2006. I am now completely comfortable with the actual words and the set of words that tends to come with them, at least when I use them around friends and family. I can usually read them on a page or a computer screen without much emotion whatsoever. I thought I was an expert at this.
This year brings another unexpected lesson. Facing what those words really mean to Erik and our family. When I do sleep now, my dreams are strange. They are filled with images of myself as a disabled child being tortured, ridiculed, and teased on a playground. Last night I found myself in another dream wandering the halls of a giant luxury hotel that had no exit, lost and completely alone. I passed numbered rows of locked, slab-like doors as my feet sunk into thick, soft carpet. In the one I had last night, I was in high school, stricken with a nonspecific but horrible disability but keenly aware of my surroundings. I overheard sharp, cruel words pertaining to me and bubbly giggles percolating through a closed door in front of where I stood. I threw the door open and confronted a pair of teenage girls, feeling angry and violent. The last thing I remember before I awoke was staring into their eyes, large as saucers and full of shock. Erik is absent from each of these strange visions, but I know they are all about him and my role as a mother, anyway. It is probably too painful for my brain to place the actual image of Erik in any of them. I am certain that with the passage of time, they will fade, at least for the most part. This is just another step in the process. This year will bring more encounters with people who have WS. Last year I couldn't bring myself to even talk to an adult with WS. I could only manage to shake the strange, seemingly prematurely aged hand of one woman and turn to walk away like a coward. This year I hope I will have the courage and the strength to accept what all of the words I have learned really mean.
This year I hope to gather enough courage to speak. Even the courage to "squeak." This year I want to use the words I have learned with grace in a group of strangers if I have the desire to speak about my child.
This year I hope to stop turning away.
Labels: grief, healing, Williams syndrome
posted by Nancy at 6:19 PM
2 Comments:
You've never been a quitter-- sometimes doggedness pays off-- not only for you, but for other people, too.
Again, you are my hero.
Love, Mom
Im not really sure what to say, the song hotel calafornia came flooding into my mind reading about your dreams rather, nightmares. I am proud.. no thats not the word. In awe? of how many amazing things you have acomplished since i have "known" you and although you are struggling, your struggle brings such peace and validation to those around you i just hope it will oneday soon bring you that peace too. One step behind you, love ya always Nance.
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