I just wanted to say hello to everyone. I've read so many personal and very intimate stories here I felt like it was my turn. I have a beautiful daughter with PFFD she is 8 years old (will be 9 very soon) Unilateral, rt leg, class D. She had Rotation Plasty at age 2 at Shriners Hospital in Portland, Or. She is absolutely amazing and very well adjusted and happy. Although I knew a time would come when she needed more support than I could give her and it seems that time is now. She came home from school crying about how she is tired of everyone staring at her all the time and she knows she has lots of friends but no one understands how she feels. No one understands.
Well as you can imagine my heart broke into a million pieces and now I am on a mission. Everyone should have a friend who truely understands how they feel and that is why I am here. If I can't be that person for her I will make sure I can find someone who can!
I have truely enjoyed reading and seeing pictures of all the milestones, happy ocassions, and achievments in your lives and can't wait to share them with her. She may not have a best friend who understands her yet but now she has a community of people who can support her and me.
April
Comments
Welcome, April!
Hi, April! Welcome to the forum! My name is Linda, and I'm 31 years old (as of yesterday!). I was born with bilateral PFFD, and I can certainly understand how Maddy feels. Some days you can take the stares, and some days you just can't tolerate them.
There are a number of people on here who have children close to Maddy's age. I hope that one of them responds to you. In the meantime, if I can help you or Maddy, please let me know.
Linda
Thank You
1st of all "Happy Birthday" and thank you for the encouragement. I hope I do have some kids respond but it is also very nice to have an adult Mom with personal experience like yourself to get advice from. Who better to answer questions for me than someone who has been throug it all. I hope to be in touch again soon.
April
Hi
Hi April. I know how you feel. My son is 10 and he wears a prothesis on his right leg, we have not gone with any surgeries for this yet. He has such an awesome personality. He has friends everywhere. But, there was one time when kids staring and talking about him in a store got to him. It had never bothered him before, but suddenly it affected him so much that he began to cry in the store. I was heartbroken as well and I wanted to talk to their parents, but I didn't. I decided that he/we will go through some hurts and we need to learn how to deal with it. Ever since he was old enough to walk and talk I have taught him not to be ashamed of this and never to back down from someone who is curious. There are so many people who stare in stores and everywhere we go that we decided years ago to come out and show them the prosthesis and tell them why he has it right there on the spot. And we have. This has proven to be wonderful. It's mainly kids who stare and whisper (adults stare too, but will not dare talk). I think it embarrasses the parents when their child starts asking so we normally smile and tell the child and adult that it's ok we love talking to people about this and making new friends. The kids end up thinking it's way cool and the parents feel better too. You can be that strength for your daughter. Of course you hurt with her, but you be the first one to help her back up every time and let her know she must go on, a lot of people may be staring, but ALL of them aren't. Hopefully she will make some friends on this site as well.
Sincerely,
Shell
Pffd and back problems
I am new here and also to the blog deal altogether. I am a 34 year old male with a pffd left leg not sure what class and also had a van ness that did not work then had the foot taken off. I have walked most of my life with a straight leg and now have bad back problems. My dad is a Viet Nam Vet that was exposed to agent orange and now has type 2 diabetes I just want to know if anyone else has a situation like mine. I do believe my birth defect was caused be the dioxin the he was subjected to. If anyone has any info please let me know.
Thank You
Jeff