The reason for the name of this blog
I wrote a draft of this piece for an inspirational writing class. I don't think it is very inspirational. In fact, it's an "angry" piece, but it tells the story of my heart.
I was given several sheets with information about trisomy 13. They listed the physical abnormalities, common health problems, life expectancy, and the mental retardation. “They are able to recognize other family members,” one paper said. I felt my heart sink. “Are you telling me that this is the depth of their cognitive skills? Big deal!”
I did not want to learn more. It was too painful, yet I kept looking for information, stories, pictures. I found one of a boy in his teens. “Our Graduate,” read the caption underneath. “What a joke! This boy must have the cognitive skills of a two year-old.”
I read about a woman who feared her daughter would be so malformed that she did not want her husband to be present in the delivery room for her birth. I knew exactly how she felt. I too was ashamed of my son.
All your sense of beauty and reasons for pride must change when you face the reality that your child won’t meet the expectations of society. In fact, he won’t meet your own expectations because you are part of society and you are no better.
You wanted your child to be handsome and smart. You wanted people to look at him and mention how cute he was instead of you having to explain the feeding tube, or how come he looks so small for his age.
You will probably feel sorry for yourself before that feeling starts transforming into sorrow for your child and what his diagnosis means for him. Or you will feel a little of both. You are a human being grieving what wasn’t and what will be. But you will sooner or later start seeing with new eyes.
As each layer of pride and false worth began to be exposed by God, I discovered Caleb’s true beauty. Tenderness and the motherly instinct to protect took over, and “Big deal!” and “What a joke!” were replaced by “So what!” This was not about me and my hurt ego. This was about a little, fragile boy, who is deeply loved by God just the way he is and who happens to be my son!
I began to feel like saying “So what!” to doctors, therapists, and to whomever seemed to want to warn me about his prospects not being what they were supposed to be. But I was mostly telling this to myself. I was the one who felt cheated in the first place.
“I don’t think he will be able to walk,” his physical therapist confessed. So what! Yes, so what if he never learns 1 + 1! So what if he never has the best looks! There is much more to his life!
Trisomy 13 hurts and it sucks, but I have learned that my love for my son is not dependent on any achievement. There is also the realization that nobody’s worth lies in any of the things my son lacks.
I am learning that what applies to him can be applied to the whole world. The respect, the tenderness, the desire to help and protect should be born as well when I see a homeless man, an autistic child, a lost teenager, or my own healthy 6-year old who knows how to push my buttons.
“Love is blind,” they say. I don’t agree. Love sees with new eyes.
New eyes which have gone through a process of refinement.
New eyes which can see the imperfections clearly, yet look beyond them.
New eyes which can cry over them, but be cleansed by the tears.
I like my new eyes... although I still need glasses sometimes.
I was given several sheets with information about trisomy 13. They listed the physical abnormalities, common health problems, life expectancy, and the mental retardation. “They are able to recognize other family members,” one paper said. I felt my heart sink. “Are you telling me that this is the depth of their cognitive skills? Big deal!”
I did not want to learn more. It was too painful, yet I kept looking for information, stories, pictures. I found one of a boy in his teens. “Our Graduate,” read the caption underneath. “What a joke! This boy must have the cognitive skills of a two year-old.”
I read about a woman who feared her daughter would be so malformed that she did not want her husband to be present in the delivery room for her birth. I knew exactly how she felt. I too was ashamed of my son.
All your sense of beauty and reasons for pride must change when you face the reality that your child won’t meet the expectations of society. In fact, he won’t meet your own expectations because you are part of society and you are no better.
You wanted your child to be handsome and smart. You wanted people to look at him and mention how cute he was instead of you having to explain the feeding tube, or how come he looks so small for his age.
You will probably feel sorry for yourself before that feeling starts transforming into sorrow for your child and what his diagnosis means for him. Or you will feel a little of both. You are a human being grieving what wasn’t and what will be. But you will sooner or later start seeing with new eyes.
As each layer of pride and false worth began to be exposed by God, I discovered Caleb’s true beauty. Tenderness and the motherly instinct to protect took over, and “Big deal!” and “What a joke!” were replaced by “So what!” This was not about me and my hurt ego. This was about a little, fragile boy, who is deeply loved by God just the way he is and who happens to be my son!
I began to feel like saying “So what!” to doctors, therapists, and to whomever seemed to want to warn me about his prospects not being what they were supposed to be. But I was mostly telling this to myself. I was the one who felt cheated in the first place.
“I don’t think he will be able to walk,” his physical therapist confessed. So what! Yes, so what if he never learns 1 + 1! So what if he never has the best looks! There is much more to his life!
Trisomy 13 hurts and it sucks, but I have learned that my love for my son is not dependent on any achievement. There is also the realization that nobody’s worth lies in any of the things my son lacks.
I am learning that what applies to him can be applied to the whole world. The respect, the tenderness, the desire to help and protect should be born as well when I see a homeless man, an autistic child, a lost teenager, or my own healthy 6-year old who knows how to push my buttons.
“Love is blind,” they say. I don’t agree. Love sees with new eyes.
New eyes which have gone through a process of refinement.
New eyes which can see the imperfections clearly, yet look beyond them.
New eyes which can cry over them, but be cleansed by the tears.
I like my new eyes... although I still need glasses sometimes.
Comments
Post a Comment