With so much medical and genetics related information accessible online, many parents regularly turn to the internet to research everything. If you’re the parent of a child with special needs or specific medical issues, it’s crucial to understand as much as possible about current challenges, potential problems, and helpful therapies.
This knowledge is both a blessing and a curse.
Our daughter has a chromosomal deletion. This means she is missing several genes, each with a specific function(s). This damaged DNA makes her susceptible to certain diseases. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases.
We have a comprehensive list of which of our daughter’s genes are affected and after delving into the online world of genetic gene cards, we’re aware of which diseases may be looming.
I don’t have to tell you how frightening this is. It’s like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, yet you’re powerless to stop it.
There’s nothing you can do, but being armed with information and a solid understanding of your child’s diagnosis or prognosis is essential in terms of being able to ask the right questions.
Most doctors do not appreciate Dr. Google. In fact, they are often quick to dismiss anything you’ve “found” on the internet. I’m not a doctor, but my daughter’s doctors do not have a vested interest in my child like I do. They look after hundreds of children and can’t be expected to be aware of every current development or discovery; especially today as new medical and genetic research is cropping up at a furious rate.
So parents like me continue to read medical abstracts (dictionary in hand) uncovering as much information as possible.
I hate reading about what might happen to my little girl, but how can I not? My job is to look after her and protect her in any way I can.
And for those who shake their heads and say, “You can’t trust what you read on the internet!” I say, I’m not an idiot.
I understand that every piece of data should be scrutinized and cross referenced, not accepted as fact until confirmed by a doctor. So please don’t pat me on the head and tell me in a condescending tone that you know best. You don’t. You are not her parent. I am.
And so I will continue to read and research and ask questions. I will ask YOU questions. I will listen to you and respect your opinion. And if our opinions should differ, I will follow my instincts and seek a second (or third or fourth or fifth) opinion.
This is the age we live in. The layman or “laymom” is no longer content to accept the doctor’s word as final.