Read Online An Uncomplicated Life by Paul Daugherty - Free Book Online
Authors: Paul Daugherty
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space of the living room, weightless and silent, but for the breathing. I sang to her:
Goodnight, my love;
Pleasant dreams, sleep tonight my love;
May tomorrow be sunny and bright.
Father and daughter, old and frightened, needy and new, living in the moment, dancing around the room. It was the best we could do.
I was looking for something beyond perpetual motion to help me negotiate the days. I spent a few days after Jillian’s birth damning God to hell. A week later, I was back in church. It didn’t take me long to stop seeing Jillian’s birth as a tragic roll of the chromosomal dice and start seeing it as a lifelong love affair. I still required an emotional brace, though. I needed Jillian to tell me everything would be okay. I needed her presence at my own salvation. She would have to help me through.
May tomorrow be sunny and bright.
Infants need that closeness. It simulates the womb they just left. Doctors tell you to keep them wrapped tightly in the days after birth. Blanket or arms—either will do. I preferred arms. Because deep down, this part wasn’t about Jillian at all.
If you should awake, in the still of the night
Please, have no fear
I’ll be there, you know I care
Please give your love to me.
I didn’t want to hold Jillian; I needed to hold her. My sadness was large. My need to protect against it was overwhelming. So I hugged for dear life, just to feel good about something. If I hugged Jillian hard enough, maybe the Down syndrome would go away. Please give your love to me. At the end of eachday, my daughter performed therapy on me. She danced with me, around the room.
All we can do is all we can do. We aren’t remarkable, Kerry and I. We lined up the mantras all in a row, like well-trained soldiers, and they did our bidding. Trails will be blazed, moons will be jumped. Jillian will decide who she is, as much as humanly possible. All that will happen, you will see.
First, though, we danced.
I held Jillian in my arms and danced a crescent around the room. The space filled with the light from a starry sky as we circled gently around the days of our lives. What is not possible?
May tomorrow be sunny and bright.
And then she almost died.
CHAPTER 5
Dying to Breathe
If children have the ability to ignore all odds and
percentages, then maybe we can all learn from them.
When you think about it, what other choice is there
but to hope? We have two options, medically and
emotionally: Give up, or fight like hell.
— LANCE ARMSTRONG
J illian was five weeks old when she returned to the hospital, literally dying to breathe.
I can’t begin to explain what it is like to see a 6-pound, 15-ounce child diminish before your eyes. Words have not been made to bridge the gap between standard-issue fear and outright terror. We spent the first five weeks of Jillian’s life worrying about Down syndrome. Suddenly, Down syndrome was the least of our concerns.
She had been having trouble breathing, which isn’t uncommon for babies with Down syndrome. Their lungs are oftenslow to develop, and their nasal passages are small. We first thought she had a cold that, with help from doctors, wouldn’t last too long.
Quickly we realized the problem was that Jillian was not equipped to fight the virus that was creating a mucus that stuck like chewing gum to her impossibly small lungs. The textbook definition of bronchiolitis is “a virus [that] enters your baby’s respiratory system and causes the bronchioles, the smallest airways in the lungs, to become swollen and irritated. Mucus collects in the bronchioles and interferes with the flow of air through the lungs.”
When a child is deeply ill, the world constricts and becomes a very simple place, settled by fear and defined by the four walls of a hospital room. Life is a narrow tunnel in which there are no choices, no options, no decisions to be made. It’s only you, the tunnel and your child.
Jillian lay small in her hospital crib at the center of a nest of
Goodnight, my love;
Pleasant dreams, sleep tonight my love;
May tomorrow be sunny and bright.
Father and daughter, old and frightened, needy and new, living in the moment, dancing around the room. It was the best we could do.
I was looking for something beyond perpetual motion to help me negotiate the days. I spent a few days after Jillian’s birth damning God to hell. A week later, I was back in church. It didn’t take me long to stop seeing Jillian’s birth as a tragic roll of the chromosomal dice and start seeing it as a lifelong love affair. I still required an emotional brace, though. I needed Jillian to tell me everything would be okay. I needed her presence at my own salvation. She would have to help me through.
May tomorrow be sunny and bright.
Infants need that closeness. It simulates the womb they just left. Doctors tell you to keep them wrapped tightly in the days after birth. Blanket or arms—either will do. I preferred arms. Because deep down, this part wasn’t about Jillian at all.
If you should awake, in the still of the night
Please, have no fear
I’ll be there, you know I care
Please give your love to me.
I didn’t want to hold Jillian; I needed to hold her. My sadness was large. My need to protect against it was overwhelming. So I hugged for dear life, just to feel good about something. If I hugged Jillian hard enough, maybe the Down syndrome would go away. Please give your love to me. At the end of eachday, my daughter performed therapy on me. She danced with me, around the room.
All we can do is all we can do. We aren’t remarkable, Kerry and I. We lined up the mantras all in a row, like well-trained soldiers, and they did our bidding. Trails will be blazed, moons will be jumped. Jillian will decide who she is, as much as humanly possible. All that will happen, you will see.
First, though, we danced.
I held Jillian in my arms and danced a crescent around the room. The space filled with the light from a starry sky as we circled gently around the days of our lives. What is not possible?
May tomorrow be sunny and bright.
And then she almost died.
CHAPTER 5
Dying to Breathe
If children have the ability to ignore all odds and
percentages, then maybe we can all learn from them.
When you think about it, what other choice is there
but to hope? We have two options, medically and
emotionally: Give up, or fight like hell.
— LANCE ARMSTRONG
J illian was five weeks old when she returned to the hospital, literally dying to breathe.
I can’t begin to explain what it is like to see a 6-pound, 15-ounce child diminish before your eyes. Words have not been made to bridge the gap between standard-issue fear and outright terror. We spent the first five weeks of Jillian’s life worrying about Down syndrome. Suddenly, Down syndrome was the least of our concerns.
She had been having trouble breathing, which isn’t uncommon for babies with Down syndrome. Their lungs are oftenslow to develop, and their nasal passages are small. We first thought she had a cold that, with help from doctors, wouldn’t last too long.
Quickly we realized the problem was that Jillian was not equipped to fight the virus that was creating a mucus that stuck like chewing gum to her impossibly small lungs. The textbook definition of bronchiolitis is “a virus [that] enters your baby’s respiratory system and causes the bronchioles, the smallest airways in the lungs, to become swollen and irritated. Mucus collects in the bronchioles and interferes with the flow of air through the lungs.”
When a child is deeply ill, the world constricts and becomes a very simple place, settled by fear and defined by the four walls of a hospital room. Life is a narrow tunnel in which there are no choices, no options, no decisions to be made. It’s only you, the tunnel and your child.
Jillian lay small in her hospital crib at the center of a nest of
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