One of the worst days of my life — and one that I shall never forget — happened about a year and a half ago when my daughter was six years old. Let me explain. I am a breast cancer survivor who was diagnosed at age 24 and had a double mastectomy with reconstruction including silicon implants. Watching me exit the shower, she calmly looked at me and asked, “Mommy, how old will I be before they cut my chest off and give me my implants?” I was horrified and explained to her that probably wouldn’t happen. But the honest truth is, it very well may. She, at such a young age, knew instinctively what took our modern science years and many research studies to find out — that children of mothers diagnosed at extremely young ages have very high rates of being diagnosed with breast cancer themselves.
In my last column, I introduced you to my autistic son, Connor. I am also the fiercely proud mother, advocate and teacher to my angelic-faced daughter Aurora. She is an extraordinary child who faces unbelievable challenges with a courage and grace beyond her years. Yet, Aurora is our family’s second special needs child. At the age of seven, she battles medical and psychological demons no child should be forced to suffer.
Aurora has been diagnosed with Rapidly Cycling Bipolar Type 2, Generalized Anxiety Disorder (GAD), Obsessive Compulsive Disorder (OCD), Attention Deficit Disorder (ADD), Pediatric Migraines with Aura, Convulsions that may be Nonepileptic Seizures, and Leber’s Hereditary Optic Neuropathy (LHON) that is slowly destroying her eyesight and may lead to legal or complete blindness.
Those technical and terrifying diagnosis do not define my daughter. Aurora begged to learn to read, and at the age of four, flew through the Hooked on Phonics program. She remains a voracious reader who is physically attached to her Kindle reader, which allows her to touch any word and see the dictionary definition. She devours adult poetry books and read an adult Stargate Universe Sci-Fi 800-page novel in a week. When her father and I sat her down and explained the LHON diagnosis and the fact she might go totally blind, her first and only words were a request to learn Braille as soon as possible so she could continue to read. She has proven to me she is the pillar of strength I always prayed my daughter would be.
Aurora’s OCD focuses in a peculiar manner. She is obsessed with Sci-Fi and particularly strong, extremely intelligent characters in books and TV series. To date, all of her heroes are either scientists or prodigies. Dr. Rush, the brilliant scientist in Stargate Universe, and Charlie, the math prodigy and Cal-Sci Professor in “Numbers,” are among her current obsessions. Stargate Universe forced me to explain Faster Than Light (FTL) starship engines to a six-year-old. “Numbers,” required a discussion on algorithms and criminal profiling. Charlie’s brother Don is a FBI agent who once shot his gun in the course of duty. Due to her insistent inquiries about the law, I spent half a day googling FBI procedures on firearms.
Her Rapidly Cycling Bipolar Type 2 creates many days where she’s hysterically giggling one moment, and five minutes later she’s deeply depressed, hostile and uncooperative. Her episodes of Bipolar mania are causing her to storm back and forth through our house until she slams into walls head-on to relieve the unbearable stress. We went through recent phases where she was afraid neighbors were going to come out of their open garages during our evening walks and “get her”, or the weeks she wouldn’t sleep due to fears strangers were going to come through her bedroom window and hurt her. During this school year, she had a migraine every day for 30 days straight and lost her vision during two separate standardized tests.
So where does this lead me as a mother and us as a family? We have some tough medical, educational and social battles to fight. Yes, my daughter is medically disabled and a special needs child. But I could not have been prouder when she independently requested to be placed in the Latin class next year in the third grade. She shares a childhood dream of mine to grow up to become a writer. Combating her anxiety of strangers and groups of people, she is excited to attend a children’s writing camp at our local literary center in a few weeks. The struggles we share as a family raising Aurora are beyond a hardship. Yet I am utterly convinced my daughter is a beacon in the night who will contribute to society in unbelievable ways. One day in the future, she will take her place as an amazing journalist or the next great American novelist.
Thank you, dear readers, for allowing me to introduce my two children and our remarkable, yet often challenging, lives. Please join me in upcoming columns as I further explore various other issues facing families with special needs children. I invite you to visit my Facebook page for this column, “I did not sign up for this Special Needs Parenting,” for additional stories and pictures that space restraints will not permit me to share here.
In addition, I welcome feedback and questions at: firstname.lastname@example.org.