What They Don't Know
This was my first attempt at writing an essay about my experience. I wrote it in April 2012.
“The preliminary results show a problem with chromosome 13. This is very serious...,” the doctor said with a grave expression.
“That’s the one which is incompatible with life, right?”
“It can be.”
The doctor and I were referring to trisomy 13, and that’s how our story begins.
My second son, Caleb, was born on March 25, 2010, three weeks ahead of time. We knew there was a chance that something might be wrong since a couple of soft markers had been detected during my first level 2 ultrasound. However, after a re-check a month later, we had been reassured by an optimistic perinatologist that there was a 95% chance that everything was normal. After all, if they did imaging tests on each of us, we would all find out we are somewhat different. Caleb was so much a surprise to us as he was to the doctors.
You see, Caleb has very few of the common physical traits seen in trisomy 13. He is a lucky boy born with a healthy heart, healthy lungs and good enough kidneys. He does not have a cleft lip nor a cleft palate. He does not have any extra fingers nor does he have underdeveloped eyes. He is not missing part of his scalp. He could pass for a “normal” baby provided you don’t notice the feeding tube, the shape and position of his ears, the small jaw, and the fact that he cannot see; most of all, provided you don’t know he is two-years old. Caleb has the body of a 9 month-old and the motor and cognitive skills of a 2 month-old. Probably not even that. Caleb is Caleb.
I noticed right away that something was not quite right. For one, his nose was too wide to belong to our family. I even told him moments after birth, “Estás bien fellillo, hijo” (“You are pretty ugly, my son.”) He showed no interest in breastfeeding. He was simply there, seemingly taking it all in. Soon we started learning of his several abnormalities; those which the doctors could see with the naked eye.
When the neonatologist on call came to tell me about the preliminary genetic testing results, my husband, Paul, was home and my OB/Gyn was in the room with me. The neonatologist asked to speak with Paul over the phone personally and urged him to come back to the hospital right away.
Why the rush? He did not say it then, but now I understand he did not know how long Caleb would live. There is a reason why trisomy 13 is often labeled “incompatible with life.” These children tend to suffer from apnea, for example. They forget to breathe.
After saying how sorry they all were, the doctors left, and I cried for the first time the most honest cry of pain and gratitude. With all sincerity I thanked God for my two boys: Daniel, my healthy 4 year-old at the time, and Caleb, my sick, atypical, child. My theological turmoil would start later.
Today, just like two years ago, Caleb’s life is full of certainties and uncertainties. However, that is life for everyone, isn’t it?
Still, you are born with an extra chromosome 13, and doctors know better than palm-readers (or so they think) what will happen in your life:
You will die young (most likely shortly after birth).
You will be profoundly delayed.
You won’t walk nor talk.
You will be prone to seizures.
“The preliminary results show a problem with chromosome 13. This is very serious...,” the doctor said with a grave expression.
“That’s the one which is incompatible with life, right?”
“It can be.”
The doctor and I were referring to trisomy 13, and that’s how our story begins.
My second son, Caleb, was born on March 25, 2010, three weeks ahead of time. We knew there was a chance that something might be wrong since a couple of soft markers had been detected during my first level 2 ultrasound. However, after a re-check a month later, we had been reassured by an optimistic perinatologist that there was a 95% chance that everything was normal. After all, if they did imaging tests on each of us, we would all find out we are somewhat different. Caleb was so much a surprise to us as he was to the doctors.
You see, Caleb has very few of the common physical traits seen in trisomy 13. He is a lucky boy born with a healthy heart, healthy lungs and good enough kidneys. He does not have a cleft lip nor a cleft palate. He does not have any extra fingers nor does he have underdeveloped eyes. He is not missing part of his scalp. He could pass for a “normal” baby provided you don’t notice the feeding tube, the shape and position of his ears, the small jaw, and the fact that he cannot see; most of all, provided you don’t know he is two-years old. Caleb has the body of a 9 month-old and the motor and cognitive skills of a 2 month-old. Probably not even that. Caleb is Caleb.
I noticed right away that something was not quite right. For one, his nose was too wide to belong to our family. I even told him moments after birth, “Estás bien fellillo, hijo” (“You are pretty ugly, my son.”) He showed no interest in breastfeeding. He was simply there, seemingly taking it all in. Soon we started learning of his several abnormalities; those which the doctors could see with the naked eye.
When the neonatologist on call came to tell me about the preliminary genetic testing results, my husband, Paul, was home and my OB/Gyn was in the room with me. The neonatologist asked to speak with Paul over the phone personally and urged him to come back to the hospital right away.
Why the rush? He did not say it then, but now I understand he did not know how long Caleb would live. There is a reason why trisomy 13 is often labeled “incompatible with life.” These children tend to suffer from apnea, for example. They forget to breathe.
After saying how sorry they all were, the doctors left, and I cried for the first time the most honest cry of pain and gratitude. With all sincerity I thanked God for my two boys: Daniel, my healthy 4 year-old at the time, and Caleb, my sick, atypical, child. My theological turmoil would start later.
Today, just like two years ago, Caleb’s life is full of certainties and uncertainties. However, that is life for everyone, isn’t it?
Still, you are born with an extra chromosome 13, and doctors know better than palm-readers (or so they think) what will happen in your life:
You will die young (most likely shortly after birth).
You will be profoundly delayed.
You won’t walk nor talk.
You will be prone to seizures.
Etc. etc.
What they don’t know is how much you will be loved. That is up to those around you. And those around you don’t know either. That is the first miracle.
It’s the miracle of a profound love never experienced, a love that moves you to tenderness, a love that makes you want to give yourself completely to a vulnerable human being. It’s the miracle of unconditional love.
What they don’t know is how much you will be loved. That is up to those around you. And those around you don’t know either. That is the first miracle.
It’s the miracle of a profound love never experienced, a love that moves you to tenderness, a love that makes you want to give yourself completely to a vulnerable human being. It’s the miracle of unconditional love.
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