Health knowledge made personal

Ashley's Mom Patient Expert

California
Ashley's Mom (Deborah), once a police officer, is now a computer professional who balances her work life and her very busy home life as the single parent of four unique children. Deborah's  birth son, Chip, is 18 years old and will be going off to college in the Fall of 2009. When Chip... Full Bio
› Share page:
 

Bio

Ashley's Mom (Deborah), once a police officer, is now a computer professional who balances her work life and her very busy home life as the single parent of four unique children.

Deborah's  birth son, Chip, is 18 years old and will be going off to college in the Fall of 2009. When Chip was 5 years old, Deborah adopted her daughter, Ashley. Ashley, now 14years old, was born 14 weeks prematurely to an alcoholic birth mother. Diagnosed with deafblindness, epilepsy, ADHD, asthma, and a rare condition called Juvenile Xanthogranulomas which causes tumors to form. Ashley has had tumors removed from her skin, under her skin, her eyes and ears, her brain and has had her gallbladder removed due to tumors. She currently has three brain tumors which her neurosurgeon is watching carefully. While all that may sound rather daunting, Ashley is a strong-willed and opinionated teenager who insists of wearing dresses, even to bed, and often is sent to the school principal's office for cursing in sign language. She is beautiful and funny and loving and a special treat that graces people's lives.

 Two years after adopting Ashley, Deborah adopted her daughter, Jessica, then 9 years old. Jessica, now 18 years old, was diagnosed with brain cancer at the age of 4 months. Following two years of chemotherapy and radiation, Jessica was left with a significant cognitive disability and hemiplegia (limited use of the left side of her body). However, the time that Jessica spent in foster care (9 years )has left significant emotional scars. Jessica is diagnosed with Reactive Attachment Disorder, a diagnosis common in children who have spent time in foster care, and manifested in outbursts of rage and aggression. Jessica has worked very hard over the past 9 years to work through these issues, and is making good progress. Her primary goal is to be a nurse's aide and to live independently.

 And finally, four years ago, Deborah brought Corey, then 12 years old, into her family. Corey had spent the first 10 years of his life living with his prostitute, drug-addicted birth mother on the streets of Baltimore, Maryland. His grandparents then took him into their home in a retirement community in Florida, and soon after, worked to find a more permanent, more appropriate home for him. Unfortunately, Deborah has not been able to formally adopt Corey for two reasons. First, his birth mother refuses to relinquish her rights, and secondly, Corey is a member of the Cherokee tribe. The tribe refuses to permit his adoption outside the tribe. Those two things really do not matter because Corey is as much Deborah's child as any of the other children. Corey and Deborah are now just waiting until Corey is 18 years old when he can consent as an adult to his own adoption. Given all that Corey has experienced in his young life, he is remarkably well-adjusted, and is looking forward to a career in the military.

Needless to say, Deborah's life is very busy and never boring. In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities.

 She can often be found lobbying her state lawmakers and serving on many boards and commissions serving people with disabilities. She does find time to write her blog, pipecleanerdreams.blogspot.com, five days a week, and her writing has also been featured in local Virginia magazines and newspapers.

Ashley's story has also been chronicled in a book by Jonathan Mooney titled "Short Bus Stories". Ashley's chapter in that book is titled "How to Curse in Sign Lanuguage."