Sometimes I look at my 14 year old daughter, Maddie and am totally blown away. Her smile seems to be connected to my heart. Maybe that is the way it is for all moms. Or maybe it is because these smiles are part of the unexpected gift of this particular child. Even in the face of difficulty, that smile makes me certain I am the luckiest mom in world.
The first time I saw her, she was in a baby swing—the last swing in a long row. We had to walk through a flock of toddlers to get to her. The other children, the shelter staff, and the caseworker beside me were just background. All I could see was the infant who had been pointed out as Madeleine.
I was there in a youth shelter in Las Vegas, NV to take her into emergency medical foster care. By that time I had heard all the horrible details of a near SIDS (sudden infant death syndrome) event which had left 3 month old Maddie with severe brain damage. According to the doctor I had spoken to on the phone, Maddie would be profoundly mentally retarded, blind, deaf and a quadriplegic. Having been a chaplain the Children’s Hospital for several years, I knew what all that meant. But she was an infant who needed to be loved. I picked her out of the swing and she started screaming. With a head full of dark curls and a face red with anger, she was full of life!
Maddie quickly became the center of my world. At six months, I heard the words palliative care applied to Maddie for the first time. With all the bad predictions given for Maddie, impending death was one I had not anticipated. I was overwhelmed with grief and determination. I might not be able to stop her from dying but I could give her the best life possible until then. The first step was making sure that she belonged to someone! I started the adoption process.
Maddie is now, a 14 years old, a freshman in high school and an artist. She communicates with eye gaze and a simple communication devise. She likes music, poetry, boys, and wild shoes. She is always concerned about other children and adults having trouble. Her heroes are Gandhi and Obama. She has a delightful sense of humor and often teases those that she likes and loves it when people make mistakes. This year her favorite subject seems to science. She would like to be a writer some day.
Life has not been easy for Maddie. She has been hospitalized more times than I can count, twice for over a month. Three times she was sent home on palliative care and three times she grew healthier and stronger. She lives with a daily host of medications and medical treatments. She uses a wheelchair and has a feeding tube. Although she is able to move some and sees some, she is considered a quadriplegic and has significant vision issues but she is not profoundly mentally retarded or deaf.
The first time I saw her, she was in a baby swing—the last swing in a long row. We had to walk through a flock of toddlers to get to her. The other children, the shelter staff, and the caseworker beside me were just background. All I could see was the infant who had been pointed out as Madeleine.
I was there in a youth shelter in Las Vegas, NV to take her into emergency medical foster care. By that time I had heard all the horrible details of a near SIDS (sudden infant death syndrome) event which had left 3 month old Maddie with severe brain damage. According to the doctor I had spoken to on the phone, Maddie would be profoundly mentally retarded, blind, deaf and a quadriplegic. Having been a chaplain the Children’s Hospital for several years, I knew what all that meant. But she was an infant who needed to be loved. I picked her out of the swing and she started screaming. With a head full of dark curls and a face red with anger, she was full of life!
Maddie quickly became the center of my world. At six months, I heard the words palliative care applied to Maddie for the first time. With all the bad predictions given for Maddie, impending death was one I had not anticipated. I was overwhelmed with grief and determination. I might not be able to stop her from dying but I could give her the best life possible until then. The first step was making sure that she belonged to someone! I started the adoption process.
Maddie is now, a 14 years old, a freshman in high school and an artist. She communicates with eye gaze and a simple communication devise. She likes music, poetry, boys, and wild shoes. She is always concerned about other children and adults having trouble. Her heroes are Gandhi and Obama. She has a delightful sense of humor and often teases those that she likes and loves it when people make mistakes. This year her favorite subject seems to science. She would like to be a writer some day.
Life has not been easy for Maddie. She has been hospitalized more times than I can count, twice for over a month. Three times she was sent home on palliative care and three times she grew healthier and stronger. She lives with a daily host of medications and medical treatments. She uses a wheelchair and has a feeding tube. Although she is able to move some and sees some, she is considered a quadriplegic and has significant vision issues but she is not profoundly mentally retarded or deaf.
Maddie helping at the store last year.
Maddie painting for a charity.
Maddie is all about life. It has been a week since she was discharged from the hospital for pancreatis and a urinary tract infection. In the last two days she passed nine kidney stones. Today she was painting paper for a project which will be auctioned for an organization in Indiana dedicated to eliminating prejudice.
Glimpses of Maddie's Past
One of the few moments she has been able to hold her head up.
It was definitely Maddie's idea! Do you know how far the ground is from the top of an elephant? Yikes!
