This has been one of the hardest week's of my life. To have to watch my daughter struggle through each day with no vision. To not know if she will ever see even the smallest of shadows. To try to be positive and supportive as she cries. Have I done enough? Have I done the eye drops correctly? The times that I have let her lift her head because I can imagine the pain she is in, having to have her head down day and night... was it wrong? Please God don't make my weakness be the one thing that keeps her from being able to regain some vision somewhere in her future.
All the years wasted.. just staying home. Not seeing, doing, taking every opportunity to experience all that life has to offer... please give me another chance, many chances to show her more of the world.
Thank you for the miracle of medical technology... for giving us even this smallest of windows of hope... please let her see again.
Friday, June 13, 2008
Tuesday, June 3, 2008
The Girl Who Changed My Life
Have you ever had someone enter your life in a quiet way and one day you realize, that without intending to they totally changed your life, your outlook, your inner being?
My unknowing savior came into my life when I was in 6th grade. Or at least that was the year I took serious notice of her. I think I had seen her before that year once in a while trying to rush for the bus, but in the 6th grade her joy, her smile, her love of life caught my eye and I found myself in awe.
She didn't even have classes at our school, she was also a few grades behind me, but she was there at the end of most days to catch the bus and ride home with her brothers.
In 6th grade I started to become aware of those around me. Stopped dwelling on my own existence, started noticing that others had it so much worse than I did. Or that had it so much better than I did.. this is the category I put Allison in.
I don't ever think I saw her not smiling. As she made it along the sidewalks through the crowds, it didn't matter how careless others were, getting in her way, stopping her progress, she would always seemingly make room for them, and without any words spoken would always yield that right of way, like she was never rushed. Always enjoying the moment for what it was.
To this day I am not sure what her disability was. But she was sick a lot. She always had to walk with crutches and she had braces on both legs. I am trying to remember the details, I think she actually had wooden legs at a certain point, as her condition worsened. I know she must have been in horrible pain some days, but you would never know it. She loved life! Every moment!
The next year I moved on to middle school then high school and I never saw Allison again. But that one year changed me, changed my life forever.
When I gave birth to my daughter.. and was faced with all the bad news... All the doomsday predictions... All I could see in my mind was Allison. I knew at that moment that that was why Allison was placed in my path and in my heart and I never once doubted that Amy was going to be just fine, no matter what life threw at her, at us. Thanks to Allison I knew that it wasn't being a perfect person that made you have a happy life. Having a happy life was what helps you to be a perfect person!
When Amy and I moved back to Washington state I had the horrible circumstance to open the newspaper and see Allison's name in the obituaries. She lived until age 21. I had never met her parents, but had gone to school with her brothers so I sat and penned a letter to them. To express my sadness, but mostly to thank them for being the kind of parents they were. That didn't hide Allison away. That obviously had loved her so much that she could face every day so full of joy and love. I talked of her impression made on me. I told them about my Amy and that I didn't think that I would have had the courage to face what I was going to have to face over the years to come.. if it hadn't been for their example. After I mailed the letter I wondered if it was the right thing to do.
I got the most beautiful letter in return. Thanking me for my story of how Allison had made a difference. They said she had conquered most of her disabilities, was even working in a sheltered workshop and was so excited to have her own job and her own money. But a simple cosmetic improvement caused an infection that quickly took her life following the surgery. To think she was trying to fix .. what to me had been such a beautiful smile.... it just breaks my heart.
It is part of the reason each time a doctor mentions anything "cosmetic" with Amy I refuse to even consider it. I wondered sometimes, if there was another boy or girl, that went to school with Amy that may have had their life changed.. because Amy has that same smile, that same inner joy.
Here's to you my special angel Allison!
And here's to you all my new friends! May we all have the joy of making a mark in each other's worlds!
My unknowing savior came into my life when I was in 6th grade. Or at least that was the year I took serious notice of her. I think I had seen her before that year once in a while trying to rush for the bus, but in the 6th grade her joy, her smile, her love of life caught my eye and I found myself in awe.
She didn't even have classes at our school, she was also a few grades behind me, but she was there at the end of most days to catch the bus and ride home with her brothers.
In 6th grade I started to become aware of those around me. Stopped dwelling on my own existence, started noticing that others had it so much worse than I did. Or that had it so much better than I did.. this is the category I put Allison in.
I don't ever think I saw her not smiling. As she made it along the sidewalks through the crowds, it didn't matter how careless others were, getting in her way, stopping her progress, she would always seemingly make room for them, and without any words spoken would always yield that right of way, like she was never rushed. Always enjoying the moment for what it was.
To this day I am not sure what her disability was. But she was sick a lot. She always had to walk with crutches and she had braces on both legs. I am trying to remember the details, I think she actually had wooden legs at a certain point, as her condition worsened. I know she must have been in horrible pain some days, but you would never know it. She loved life! Every moment!
The next year I moved on to middle school then high school and I never saw Allison again. But that one year changed me, changed my life forever.
When I gave birth to my daughter.. and was faced with all the bad news... All the doomsday predictions... All I could see in my mind was Allison. I knew at that moment that that was why Allison was placed in my path and in my heart and I never once doubted that Amy was going to be just fine, no matter what life threw at her, at us. Thanks to Allison I knew that it wasn't being a perfect person that made you have a happy life. Having a happy life was what helps you to be a perfect person!
When Amy and I moved back to Washington state I had the horrible circumstance to open the newspaper and see Allison's name in the obituaries. She lived until age 21. I had never met her parents, but had gone to school with her brothers so I sat and penned a letter to them. To express my sadness, but mostly to thank them for being the kind of parents they were. That didn't hide Allison away. That obviously had loved her so much that she could face every day so full of joy and love. I talked of her impression made on me. I told them about my Amy and that I didn't think that I would have had the courage to face what I was going to have to face over the years to come.. if it hadn't been for their example. After I mailed the letter I wondered if it was the right thing to do.
I got the most beautiful letter in return. Thanking me for my story of how Allison had made a difference. They said she had conquered most of her disabilities, was even working in a sheltered workshop and was so excited to have her own job and her own money. But a simple cosmetic improvement caused an infection that quickly took her life following the surgery. To think she was trying to fix .. what to me had been such a beautiful smile.... it just breaks my heart.
It is part of the reason each time a doctor mentions anything "cosmetic" with Amy I refuse to even consider it. I wondered sometimes, if there was another boy or girl, that went to school with Amy that may have had their life changed.. because Amy has that same smile, that same inner joy.
Here's to you my special angel Allison!
And here's to you all my new friends! May we all have the joy of making a mark in each other's worlds!
The Silence is Deafening
Silence is golden. A nice saying. Good when relating to a hectic day. Good when your kids are pushing you over the edge. But when is silence toxic? Can there be too much silence? Aren't there times when you need feedback even if it isn't words you want to hear? Can a relationship end because of too much silence?
Did you see me last night
Did you hear me voice
Did you try to console me
Did you give me a choice
..to feel
Do words from my mouth
reach to your ears
Do you think about us
Does it cause you fears
...it does me
Are we living the life
you thought it could be
Are we moving the direction
you want us to be
...not me
When we sit in a room
and no words are spoken
Do you feel discontent
Do you feel slightly broken
...like me
Have we come to a point
where there is no return
Have we reached a space
where there no more to learn
...I grieve
How long can the silence
between us remain
before one of us goes
completely insane
...and leave
And when this happens
will you be caught unaware
crying how could you leave me
dont you know that I care
...I asked
Author anonymous, unheard
Did you see me last night
Did you hear me voice
Did you try to console me
Did you give me a choice
..to feel
Do words from my mouth
reach to your ears
Do you think about us
Does it cause you fears
...it does me
Are we living the life
you thought it could be
Are we moving the direction
you want us to be
...not me
When we sit in a room
and no words are spoken
Do you feel discontent
Do you feel slightly broken
...like me
Have we come to a point
where there is no return
Have we reached a space
where there no more to learn
...I grieve
How long can the silence
between us remain
before one of us goes
completely insane
...and leave
And when this happens
will you be caught unaware
crying how could you leave me
dont you know that I care
...I asked
Author anonymous, unheard
A Special Visit With Santa Part 2
The little girl went home with a full and happy heart. This would be the year, she just knew it! Even though this had been her wish year after year... She had so much faith in Santa.. he would find her mom, he would lead her to her doorstep... and then they would smile and laugh and be happy again just like she remembered they once were.
As the days led up to Christmas Eve, she thought she saw signs that her mom was trying to contact them.. the phone would ring, but no one would tell her who was on the other end, a card would show up in the mailbox from an address she didn't recognize. "That must be the one from my mom! They are just keeping it a surprise for me until I wake up and see her Christmas morning."
She spent tons of time packing and repacking her small suitcase. She wouldn't need much. When her mom came back she would buy her all the things that she really wanted, so she just put in a few changes of clothes and her favorite doll. She hid it under her bed so the housemother wouldn't see it and feel bad that she was so excited to be going away with her mom.
Then Christmas Eve finally came. They ate dinner and Mr. Don talked about not expecting much from Santa under the tree because there just wasn't any extra money for "silly little things that would just get broken in a day or two" but she wasn't hurt by this.. because she knew she was getting the best present of all.
That night, she chose her prettiest flannel nightgown. She wanted to look her best when she came down the stairs and saw mommy sitting by the tree! Then she said her prayers, said a special thank you to Santa, hugged herself goodnight and fell asleep.
She woke up extra early Christmas morning and tried to stay in bed because she didn't want to get in trouble "for waking the whole house up"... but knowing that her mom was going to be downstairs... Oh! She just couldn't stand it anymore!
Finally she heard stirring in the kitchen down below, then voices. Was one of those her mom? It had been so long since she had heard her voice, she had forgotten what she sounded like.
She brushed her hair one last time, smoothed the wrinkles out of her nightgown and slowly crept down the stairs. She could see the glow of the Christmas tree lights as she reached the bottom and she saw the small gifts under the tree, but her eyes skipped right over them, searching the room, looking for that smiling face, she remembered from the pictures she looked at every day.
She quickly scanned the room and found it empty. The kitchen! That's where she must be! So off she skipped, and as she rounded the corner she heard the housemother say, "Well I hope she won't be too disappointed, that child is always expecting way too much. If I heard her say one more time Santa know what I wants, I swear Don I was ready to swat her. She has been flittering around this house for days."
The little girl came to a stop. That didn't make it sound like her mom was in the kitchen. But she knew that if she believed hard enough Santa would make her wish come true, so she decided to go back upstairs to get dressed so she would be ready to leave when her mom arrived.
When she came back down Mr. Don handed her a gift to open. It was a coloring book and some crayons. She gave him a big hug then whispered "I will miss you most" then went to say thank you to the housemother.
All day long she sat in the living room watching out the front window, waiting for her mom to come up the walkway. She colored some beautiful pictures for her in her new book. She only left the living room when the housemother made her have some breakfast, then lunch, then supper... but right after she would run back into the living room waiting, watching... saying over and over in her head "I do believe, I do believe."
Then it was bedtime and Mr. Don made her leave the window seat and put on her nightgown and go to bed. Another Christmas Day had come to an end.
She tried squeezing her eyelids together very tight, so she wouldn't cry, but the tears streamed past and down her cheeks. She said her prayers and said a special thank you to Santa for trying his best. "I still believe in you Santa and I know that you will bring my mommy back to me one day... I just know you will."
Then, just as little girls are able to do, she fell asleep and dreamed of the life she would have when her mom came back and they were able to live happily ever after.
For without hope, faith, dreams, and visions of a better life ahead, the little girl could not exist.
As the days led up to Christmas Eve, she thought she saw signs that her mom was trying to contact them.. the phone would ring, but no one would tell her who was on the other end, a card would show up in the mailbox from an address she didn't recognize. "That must be the one from my mom! They are just keeping it a surprise for me until I wake up and see her Christmas morning."
She spent tons of time packing and repacking her small suitcase. She wouldn't need much. When her mom came back she would buy her all the things that she really wanted, so she just put in a few changes of clothes and her favorite doll. She hid it under her bed so the housemother wouldn't see it and feel bad that she was so excited to be going away with her mom.
Then Christmas Eve finally came. They ate dinner and Mr. Don talked about not expecting much from Santa under the tree because there just wasn't any extra money for "silly little things that would just get broken in a day or two" but she wasn't hurt by this.. because she knew she was getting the best present of all.
That night, she chose her prettiest flannel nightgown. She wanted to look her best when she came down the stairs and saw mommy sitting by the tree! Then she said her prayers, said a special thank you to Santa, hugged herself goodnight and fell asleep.
She woke up extra early Christmas morning and tried to stay in bed because she didn't want to get in trouble "for waking the whole house up"... but knowing that her mom was going to be downstairs... Oh! She just couldn't stand it anymore!
Finally she heard stirring in the kitchen down below, then voices. Was one of those her mom? It had been so long since she had heard her voice, she had forgotten what she sounded like.
She brushed her hair one last time, smoothed the wrinkles out of her nightgown and slowly crept down the stairs. She could see the glow of the Christmas tree lights as she reached the bottom and she saw the small gifts under the tree, but her eyes skipped right over them, searching the room, looking for that smiling face, she remembered from the pictures she looked at every day.
She quickly scanned the room and found it empty. The kitchen! That's where she must be! So off she skipped, and as she rounded the corner she heard the housemother say, "Well I hope she won't be too disappointed, that child is always expecting way too much. If I heard her say one more time Santa know what I wants, I swear Don I was ready to swat her. She has been flittering around this house for days."
The little girl came to a stop. That didn't make it sound like her mom was in the kitchen. But she knew that if she believed hard enough Santa would make her wish come true, so she decided to go back upstairs to get dressed so she would be ready to leave when her mom arrived.
When she came back down Mr. Don handed her a gift to open. It was a coloring book and some crayons. She gave him a big hug then whispered "I will miss you most" then went to say thank you to the housemother.
All day long she sat in the living room watching out the front window, waiting for her mom to come up the walkway. She colored some beautiful pictures for her in her new book. She only left the living room when the housemother made her have some breakfast, then lunch, then supper... but right after she would run back into the living room waiting, watching... saying over and over in her head "I do believe, I do believe."
Then it was bedtime and Mr. Don made her leave the window seat and put on her nightgown and go to bed. Another Christmas Day had come to an end.
She tried squeezing her eyelids together very tight, so she wouldn't cry, but the tears streamed past and down her cheeks. She said her prayers and said a special thank you to Santa for trying his best. "I still believe in you Santa and I know that you will bring my mommy back to me one day... I just know you will."
Then, just as little girls are able to do, she fell asleep and dreamed of the life she would have when her mom came back and they were able to live happily ever after.
For without hope, faith, dreams, and visions of a better life ahead, the little girl could not exist.
A Special Visit With Santa - Part 1
She stood in line, with hundreds of other children. It seemed the line would never move forward.
As she looked around she saw mom's tugging at the clothes of the children at their feet. "Stand still, you are messing up your hair." she heard from one mom. "Why can't you be quiet for just a few minutes" said another mom to an energetic little boy. But even as she saw the mom's nagging and correcting their children the little girl smiled.
A child just a few people in front of her turned and stared back. The little girl looked down, afraid to keep eye contact. "Mommy, why is she dressed like that? Why isn't she in a Christmas outfit like us?" she heard him ask. The mom quickly shooshed him and pulled him closer in front of her in line.
She looked down at her clothes. She had dressed in her best and she was sure they had been clean enough when she put them on. A part of her wished she had a nice dress, but she had picked her best multi colored shirt and she had the hair ribbon that Mrs. Jilly had made for her just before she went away to live in "the home".
She blinked back the tears that always seemed to be right at the edges of her eyes whenever she thought of Mrs. Jilly. How she used to light up whenever she entered the room, and always took the time to ask about her day and show her the new things she was knitting and sewing.
She shook her head to clear her thoughts. This was not the day for tears. It took weeks of begging to get Mr. Don to bring her with him when he came to do his part-time job at the mall. Today was her special day to meet Santa Claus. She just knew if he knew what she really wanted for Christmas that he would make sure this year was different.
The line started inching forward. She was finally near enough to see Santa sitting on his red throne. He smiled as each child sat on his lap and listened as they rattled off the list of toys that they wanted to find under the tree.
Oh he looked so jolly! Her eyes danced with excitement and she jumped from one foot to the other in eager anticipation, then it was her turn. A lady in a snowy white costume held her hand and walked her up the candy cane lane, and then she was standing right in front of Santa Claus!
"Well, come up here little one. Wouldn't you like to sit on Santa's lap and tell me what you want for Christmas?" She tried to speak but couldn't find any words in her head, so she nodded yes.
As Santa helped lift her onto his lap she noticed how soft his coat was. And how white and soft his beard was. She longed to touch it.. and tentatively reached out. She expected to have him pull away but he leaned in and whispered "Go ahead tug on it, it's real."
Oh, She couldn't do that! But she did brush the sides of his whiskers with the palm of her hand. Santa smelled like peppermint. She snuggled closer into his arm and tried not to notice all of the impatient looks from those waiting in line. This was her time!
"What would you like for Christmas little lass? What can Santa bring to put a smile on your face?" Santa asked as he drew her even closer, as if sensing that she needed the extra touch.
"I want you to bring my mommy back to get me. She went away for just a little while, but it has been so very long now. I like the people at the home I was taken to, but Santa... can you please tell my mommy I am ready for her to come back?" With that she withdrew a piece of paper with a hand drawn map and a sketch of a face. She handed this to Santa. "Here is a picture I drew of my mommy and here is how to get to the home."
She started to hop down from his lap, but turned around and gave him one last hug and whispered "I know you can find my mommy, I believe in you."
The lady in the snowy white outfit gave her a candy cane and the little girl walked away to find Mr. Don to tell him she would soon be going home.
As she looked around she saw mom's tugging at the clothes of the children at their feet. "Stand still, you are messing up your hair." she heard from one mom. "Why can't you be quiet for just a few minutes" said another mom to an energetic little boy. But even as she saw the mom's nagging and correcting their children the little girl smiled.
A child just a few people in front of her turned and stared back. The little girl looked down, afraid to keep eye contact. "Mommy, why is she dressed like that? Why isn't she in a Christmas outfit like us?" she heard him ask. The mom quickly shooshed him and pulled him closer in front of her in line.
She looked down at her clothes. She had dressed in her best and she was sure they had been clean enough when she put them on. A part of her wished she had a nice dress, but she had picked her best multi colored shirt and she had the hair ribbon that Mrs. Jilly had made for her just before she went away to live in "the home".
She blinked back the tears that always seemed to be right at the edges of her eyes whenever she thought of Mrs. Jilly. How she used to light up whenever she entered the room, and always took the time to ask about her day and show her the new things she was knitting and sewing.
She shook her head to clear her thoughts. This was not the day for tears. It took weeks of begging to get Mr. Don to bring her with him when he came to do his part-time job at the mall. Today was her special day to meet Santa Claus. She just knew if he knew what she really wanted for Christmas that he would make sure this year was different.
The line started inching forward. She was finally near enough to see Santa sitting on his red throne. He smiled as each child sat on his lap and listened as they rattled off the list of toys that they wanted to find under the tree.
Oh he looked so jolly! Her eyes danced with excitement and she jumped from one foot to the other in eager anticipation, then it was her turn. A lady in a snowy white costume held her hand and walked her up the candy cane lane, and then she was standing right in front of Santa Claus!
"Well, come up here little one. Wouldn't you like to sit on Santa's lap and tell me what you want for Christmas?" She tried to speak but couldn't find any words in her head, so she nodded yes.
As Santa helped lift her onto his lap she noticed how soft his coat was. And how white and soft his beard was. She longed to touch it.. and tentatively reached out. She expected to have him pull away but he leaned in and whispered "Go ahead tug on it, it's real."
Oh, She couldn't do that! But she did brush the sides of his whiskers with the palm of her hand. Santa smelled like peppermint. She snuggled closer into his arm and tried not to notice all of the impatient looks from those waiting in line. This was her time!
"What would you like for Christmas little lass? What can Santa bring to put a smile on your face?" Santa asked as he drew her even closer, as if sensing that she needed the extra touch.
"I want you to bring my mommy back to get me. She went away for just a little while, but it has been so very long now. I like the people at the home I was taken to, but Santa... can you please tell my mommy I am ready for her to come back?" With that she withdrew a piece of paper with a hand drawn map and a sketch of a face. She handed this to Santa. "Here is a picture I drew of my mommy and here is how to get to the home."
She started to hop down from his lap, but turned around and gave him one last hug and whispered "I know you can find my mommy, I believe in you."
The lady in the snowy white outfit gave her a candy cane and the little girl walked away to find Mr. Don to tell him she would soon be going home.
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