Mommy First
Mommy First
Parents of children with special health care needs are often required to assume responsibility for the complex care of their children. It is important for pediatric nurses to remember these parents are, first and foremost, the child's parents and primarily responsible for loving their child, providing a safe and secure home, and fostering their child's development as a person. Pediatric nurses should support the parents in the medical/nursing care of their child in whatever way possible so the parents have more time to parent. This account from a mother of a child with developmental delay helps remind us of our need to help support parents in being "parents first."
As I watch my son do his mandatory "tummy time" I notice his head bobbing all over the place. He works hard to steady it and gives me a big, prideful giggle. He soon realizes that the energy he has given to joy has taken his focus off his task at hand and he's bobbing again. I smother his soft skin with kisses and tell him I understand.
My son Aidan was born 3 years ago with special health care needs, and my head has been bobbing ever since. We spent the first 3 months of his life in major medical centers searching for a diagnosis. He had a muscle biopsy, a variety of metabolic tests, and an MRI, all of which came back negative, which left us with the diagnosis of "hypotonia of an unknown origin and global developmental delays." By the time we brought him home, I had assumed the roles of physical therapist, nutritionist, child development specialist, advocate, medical care provider, and case manager. It is difficult to remember that first, I am "Mommy."
The "Mommy first" concept came easily when my 5-year-old son, Liam, was born. I thoroughly enjoyed mothering him. Liam obliged me by doing everything the books say - sleeping through the night at 8 weeks, sitting up at 6 months, nursing like a champ. I was excited by his every move and cheerfully bragged to my friends. The most rewarding thing was how he would turn to my voice and giggle or just gaze at me like I was the greatest. I was, after all, "Mommy!"
Aidan, on the other hand, didn't seem to know "Mommy" for a long, long time. He was a floppy baby who didn't do much more than sleep for 2 months. There was nothing special about "Mommy," no special looks, coos, or extended arms when I was near. I could not even be his source of food, because a tube had to be put in his stomach with a special formula to maintain his calorie intake. The maternal joy I had felt with Liam wasn't there. There didn't seem to be a lot to be cheerful about as Aidan fought to breathe or gain weight week after week. There were times I simply didn't enjoy my family and the world around me because I was too focused on Aidan's condition and trying to better his universe. I had to learn to "Mommy" in a very different way with Aidan.
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Author Heather Bowie and her son, Aidan.
Parents of children with special health care needs are often required to assume responsibility for the complex care of their children. It is important for pediatric nurses to remember these parents are, first and foremost, the child's parents and primarily responsible for loving their child, providing a safe and secure home, and fostering their child's development as a person. Pediatric nurses should support the parents in the medical/nursing care of their child in whatever way possible so the parents have more time to parent. This account from a mother of a child with developmental delay helps remind us of our need to help support parents in being "parents first."
As I watch my son do his mandatory "tummy time" I notice his head bobbing all over the place. He works hard to steady it and gives me a big, prideful giggle. He soon realizes that the energy he has given to joy has taken his focus off his task at hand and he's bobbing again. I smother his soft skin with kisses and tell him I understand.
My son Aidan was born 3 years ago with special health care needs, and my head has been bobbing ever since. We spent the first 3 months of his life in major medical centers searching for a diagnosis. He had a muscle biopsy, a variety of metabolic tests, and an MRI, all of which came back negative, which left us with the diagnosis of "hypotonia of an unknown origin and global developmental delays." By the time we brought him home, I had assumed the roles of physical therapist, nutritionist, child development specialist, advocate, medical care provider, and case manager. It is difficult to remember that first, I am "Mommy."
The "Mommy first" concept came easily when my 5-year-old son, Liam, was born. I thoroughly enjoyed mothering him. Liam obliged me by doing everything the books say - sleeping through the night at 8 weeks, sitting up at 6 months, nursing like a champ. I was excited by his every move and cheerfully bragged to my friends. The most rewarding thing was how he would turn to my voice and giggle or just gaze at me like I was the greatest. I was, after all, "Mommy!"
Aidan, on the other hand, didn't seem to know "Mommy" for a long, long time. He was a floppy baby who didn't do much more than sleep for 2 months. There was nothing special about "Mommy," no special looks, coos, or extended arms when I was near. I could not even be his source of food, because a tube had to be put in his stomach with a special formula to maintain his calorie intake. The maternal joy I had felt with Liam wasn't there. There didn't seem to be a lot to be cheerful about as Aidan fought to breathe or gain weight week after week. There were times I simply didn't enjoy my family and the world around me because I was too focused on Aidan's condition and trying to better his universe. I had to learn to "Mommy" in a very different way with Aidan.
(Enlarge Image)
Author Heather Bowie and her son, Aidan.