good physician knows that a thorough patient exam and evaluation is necessary to make an accurate diagnosis. After reviewing the patient’s history and analyzing the tests and labs, then a physician can come to a conclusion. Making a diagnosis should be a thoughtful process. Sadly and too often in the Trisomy world, a physician will get theTrisomy 18 results from an amniocentesis or blood tests and quickly write the child off without any further evaluation as to what his or her issues are. It’s a sweeping assumption that is careless and irresponsible.
Trisomy 18 is a serious diagnosis, but physicians need to first look at their patients and see what the issues are before disregarding the infant and eliminating all hope. If they fail to do this, they abandon their patients and should not be practicing physicians. Patients deserve better. A friend of mine once said that “the MD after their name does not stand for ‘Medical Deity’!” I wish doctors would realize they should not be playing God.
What follows after a Trisomy 18 diagnosis is the long, drawn-out, bleak list of what the child will surely suffer from and will not ever be able to do. It’s the “will never” list. Rick and I painfully sat through the “will never” list many times, hearts heavy, but hopeful that Bella would prove them all wrong. We were told Bella would never sit up, never walk, never know us, never talk, and that she would be a vegetable who would never live past a month at most. But, essentially seven years later, Bella does know us. She plays with her toys and frequently looks up and smiles. She is a spunky girl who loves being silly and making everyone around her laugh. She has her favorite music that she loves listening and dancing to, and she loves books.
Bella walks all the way across the kitchen floor in her walker. She works hard at walking and knows she’s done something great when we tell her how proud we are of her. She may not speak English, but she speaks “Bellish” quite well, and we always know what she’s saying. Like any of our children, Bellais her own unique person and will do things in her own way, in her own time. We think she’s perfect and love her just the way she is! But the fact is that what Bella (or any other person with special needs) “can do” does not determine her value. What truly matters is that Bella and other children like her are all created in the image of God. My prayer is that they be treated with love, dignity, and respect, not dismissed and left to die.
The summer of 2008 was the summer of small miracles: firing hospice, Bella’s g-button surgery, and figuring out how to balance family life. These small miracles were wondrous affirmations of God’s compassionate hand acting in our broken world. C. S. Lewis wrote, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”
As the summer months went by, the “Happy Birthday Bella” sign still hung in the doorway. Determined to make every minute count with Bella, we recognized those moments as pure gifts and worthy of joyful, grateful celebration. As the weeks went by, we changed the birthday sign from one to two to three weeks. Eventually weeks turned into months and months turned into years. Bella continued to beat the odds. Hope endured. Bella’s story is small and simple, but perhaps that purity makes it possible for us to see the miracle of her life. Her large life is written in small letters.
7
LOVE IS HEROIC
• Rick Santorum •
Heroism is endurance for one moment more.
—GEORGE F. KENNAN
W hen I hear the word heroic , my mind conjures up images of a soldier single-handedly taking out an enemy position or those New York City firefighters rushing into the World Trade Center on September 11.
Webster’s Dictionary defines heroic as, among other things, “brave, courageous, extremely noble and self-sacrificing.”
To some
Trisomy 18 is a serious diagnosis, but physicians need to first look at their patients and see what the issues are before disregarding the infant and eliminating all hope. If they fail to do this, they abandon their patients and should not be practicing physicians. Patients deserve better. A friend of mine once said that “the MD after their name does not stand for ‘Medical Deity’!” I wish doctors would realize they should not be playing God.
What follows after a Trisomy 18 diagnosis is the long, drawn-out, bleak list of what the child will surely suffer from and will not ever be able to do. It’s the “will never” list. Rick and I painfully sat through the “will never” list many times, hearts heavy, but hopeful that Bella would prove them all wrong. We were told Bella would never sit up, never walk, never know us, never talk, and that she would be a vegetable who would never live past a month at most. But, essentially seven years later, Bella does know us. She plays with her toys and frequently looks up and smiles. She is a spunky girl who loves being silly and making everyone around her laugh. She has her favorite music that she loves listening and dancing to, and she loves books.
Bella walks all the way across the kitchen floor in her walker. She works hard at walking and knows she’s done something great when we tell her how proud we are of her. She may not speak English, but she speaks “Bellish” quite well, and we always know what she’s saying. Like any of our children, Bellais her own unique person and will do things in her own way, in her own time. We think she’s perfect and love her just the way she is! But the fact is that what Bella (or any other person with special needs) “can do” does not determine her value. What truly matters is that Bella and other children like her are all created in the image of God. My prayer is that they be treated with love, dignity, and respect, not dismissed and left to die.
The summer of 2008 was the summer of small miracles: firing hospice, Bella’s g-button surgery, and figuring out how to balance family life. These small miracles were wondrous affirmations of God’s compassionate hand acting in our broken world. C. S. Lewis wrote, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”
As the summer months went by, the “Happy Birthday Bella” sign still hung in the doorway. Determined to make every minute count with Bella, we recognized those moments as pure gifts and worthy of joyful, grateful celebration. As the weeks went by, we changed the birthday sign from one to two to three weeks. Eventually weeks turned into months and months turned into years. Bella continued to beat the odds. Hope endured. Bella’s story is small and simple, but perhaps that purity makes it possible for us to see the miracle of her life. Her large life is written in small letters.
7
LOVE IS HEROIC
• Rick Santorum •
Heroism is endurance for one moment more.
—GEORGE F. KENNAN
W hen I hear the word heroic , my mind conjures up images of a soldier single-handedly taking out an enemy position or those New York City firefighters rushing into the World Trade Center on September 11.
Webster’s Dictionary defines heroic as, among other things, “brave, courageous, extremely noble and self-sacrificing.”
To some
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