Coco, Hannah and Summer

Fast forward two and a half months. Hannah and I are sitting in the office of a pediatric neurologist in Honolulu. He tells me that my daughter may never progress beyond the developmental level of a two month old, her future is “predetermined” by the horrible extent of her brain damage, and there is nothing I can do about it.

Fast forward to the present. I know that Hannah suffered a stroke in utero. She was born full term weighing less than two pounds and unable to breathe on her own for at least ten minutes. After trips to Johns Hopkins in Baltimore and Stanford’s Children’s Hospital, we have a long list of diagnoses, including brain damage, cortical visual impairment (her eyes are normal, but she doesn’t understand what she sees), cerebral palsy, dysphagia (swallowing problems necessitating a feeding tube her stomach), uncontrollable seizures (she has seizure activity in her brain every one to two seconds), and microcephaly (extremely small head and brain size). Hannah is classified as “medically fragile” and requires round the clock skilled nursing care.

And yet, she continues to defy all the doctors' predictions.  In May of 2004 she began walking, and now she can navigate herself around the house.  Her therapists say she has an incredible "mental mapping" ability, which I've helped along by color coding the walls (we know that when she does have vision, it's only peripheral). She says “stop it” when she doesn’t like something and throws tantrums when she doesn’t get her way. I was always told that her frontal lobe damage meant she wouldn’t have the ability to plan in advance, but now we can tell her to go to my room, or her nurse's room, and she goes, all on her own. 

These giant steps forward, however, did not come about by themselves. I completely re-arranged my life around learning how to help her. The owner of a small company with five employees, I ended up selling my company in order to allow me to stay home with her. I’ve read everything I can find about brain development, networked extensively on the internet, and studied the federal and state laws that govern the civil rights of children with disabilities. I’ve fought hard for her to receive the services that she’s legally entitled to and that will improve her quality of life, and I have never, ever taken “no” for an answer. The 24/7 stress and sorrow of the past five years cost me my health and almost destroyed my company. Yet throughout it all, the celebrations of Hannah's every forward step make it all worthwhile.

When you are the parent or caregiver of a child with disabilities, you learn to become an advocate on their behalf. You have to learn the law, because the law is your best chance at improving your child’s life. You learn to ignore the negative projections of the doctors who are more concerned with their legal liability than they are with your child, and that you can “shop” for doctors who share your outlook just as you shop around for any service. You learn to shrug off the comments from social workers and state bureaucrats who tell you what a wonderful advocate you are for your child. Translation: they’re happy you’re doing their job for them. You learn about nutrition, supplements, and the relationship between your child’s brain and digestive system. You learn to access all the wonderful medical information that’s available on the internet, joining the hundreds of thousands of parents and primary caregivers who share their experiences, questions and solutions though internet email groups. Most importantly, you learn to think “outside the box”, and eventually it dawns on you that you know more about your child’s disabilities and medical options than many of the doctors you’ll meet.

Gradually you’ll build a support network of people who believe as you do: your child’s future is not set in stone, and that there is always something you CAN do to ensure your child’s ultimate potential is discovered.