What a great article! I related to much of it. I too was told that my daughter's tendency to go into 'status epileptus' (a seizure that lasts more than 20 mins... hers have exceeded an hour on many occassions) would, I quote, "not cause any brain damage. Um, I wish I could find that neurologist now and give him a piece of my mind. I was 25, a new mother, and trusting as all heck. I didn't even know I SHOULD educate myself, let alone take the steps to do it. I just went on what he said... there are no ramifications... she'll be fine. She had another neurologist who was nice, but she would always put the ball in my court. It was like I was paying her to be the neurologist but I was making all the decisions. At this point, though, I was more educated and savvy. I kinda didn't like the responsibility though... I almost just wish I could TRUST them completely. But, they are infallable humans, not Gods. We must always educate ourselves, just like you said so eloquently. congrats again on the great publication!
Excellent job. No support groups? Don't talk to other parents? What is/was that doctor thinking?!I thank God for the Internet every day. PKU is so rare, to be able to "talk" to another parent can make me feel like a "typical" mom, if only for a brief moment in time. That is priceless.Thanks for sharing the link, and your intimate story.
Great piece...totally agree with you. We dumped doctors a while back and saved our "she has to die" and "she has to be a vegetable" daughter. It's alot of work, but it pays off in the end.
I'm glad you're doing this. I've also read the Newsweek cover story and find it very compelling. You have so much energy!
That is a beautiful piece of writing. I know now another reason that I feel connected to you: we encountered a similar "not knowing" when Katie's illness was first discovered. We heard, "We never see this" and "In 25 years, I've never seen this," and so on. It made a scary situation even more terrifying...and it made me quite feisty. I remember thinking, "Then I'm done with you, Doctor; NEXT!" It is a different experience of parenthood, to advocate for a child who has a medical condition that has no known cure. I empathize with you deeply. Thank you for your soulful writing, sharing this so that others know they are not alone.