...she was seven.
She was born with a devastating chromosomal abnormality, which is not normally detected through prenatal testing - it was a total shock. This was a couple who had waited to have children until their 30s, and we could always count on a fancy Christmas party every year at their beautiful home. I wondered how they would deal with this unexpectedly special-needs child.
She was maybe five pounds when she was born, and had terrible reflux. I remember her dad coming, terrified, to my front door at four in the morning because she was choking. They had oxygen and a suction unit in her bedroom. When December rolled around, there appeared in our door an invitation to a Christmas party - from Mom, Dad, and Daughter.
She thrived. I went several months without seeing her, and suddenly this child who was not supposed to be able to do anything for herself was crashing around in a walker. As she grew, it became clear that she would likely never be independent. She wasn't able to talk and was nearly deaf. As part of her syndrome, she had a strong oral fixation and would put anything in her mouth that she could fit - not so much a problem when she was two, but the last couple of years were a challenge. She was tall and coordinated enough to get hold of all sorts of things, and it wasn't unusual to see a fire truck and ambulance parked in front of their house when she'd gotten something jammed in her throat. Her parents got to be pros at dealing with those times, although there was always the parental terror present.
In July, her mom noticed some lumps. She took her to the doctor, who figured they were probably fatty, but biopsied them anyway.
She was diagnosed with Stage III lymphoma, and started chemo. Even as her hair disappeared and she felt ill, I'd still get cheery greetings from her mother and inquiries about our son. Her dad would still pile her into the bike trailer and chauffer her around the neighborhood. They had friends from out of the country come to visit for two weeks, and I heard the kids in the backyard on the playset they built for her. We went away for Thanksgiving, and just before we left her dad told me she had a blood infection.
I've only had a few moments when I was really scared for my son, and they lived with that fear every single day of her life. I can't even begin to fathom how they feel.
She was born with a devastating chromosomal abnormality, which is not normally detected through prenatal testing - it was a total shock. This was a couple who had waited to have children until their 30s, and we could always count on a fancy Christmas party every year at their beautiful home. I wondered how they would deal with this unexpectedly special-needs child.
She was maybe five pounds when she was born, and had terrible reflux. I remember her dad coming, terrified, to my front door at four in the morning because she was choking. They had oxygen and a suction unit in her bedroom. When December rolled around, there appeared in our door an invitation to a Christmas party - from Mom, Dad, and Daughter.
She thrived. I went several months without seeing her, and suddenly this child who was not supposed to be able to do anything for herself was crashing around in a walker. As she grew, it became clear that she would likely never be independent. She wasn't able to talk and was nearly deaf. As part of her syndrome, she had a strong oral fixation and would put anything in her mouth that she could fit - not so much a problem when she was two, but the last couple of years were a challenge. She was tall and coordinated enough to get hold of all sorts of things, and it wasn't unusual to see a fire truck and ambulance parked in front of their house when she'd gotten something jammed in her throat. Her parents got to be pros at dealing with those times, although there was always the parental terror present.
In July, her mom noticed some lumps. She took her to the doctor, who figured they were probably fatty, but biopsied them anyway.
She was diagnosed with Stage III lymphoma, and started chemo. Even as her hair disappeared and she felt ill, I'd still get cheery greetings from her mother and inquiries about our son. Her dad would still pile her into the bike trailer and chauffer her around the neighborhood. They had friends from out of the country come to visit for two weeks, and I heard the kids in the backyard on the playset they built for her. We went away for Thanksgiving, and just before we left her dad told me she had a blood infection.
I've only had a few moments when I was really scared for my son, and they lived with that fear every single day of her life. I can't even begin to fathom how they feel.
