Thursday, July 23, 2009

Fellow PFFD-ers.

When I went back to school to become a PE teacher, I had to take anatomy and physiology I. It's about as basic a course as possible. This bone connects to this bone which connects to this bone. Memorize it. Test Friday. 
Well, the first test rolled around and you'll be happy to know I got the second highest grade in the class...with a 34. That's a 34 out of 100. (Highest grade was a 63.) People failed in spectacular fashion. People failed with sevens and eights. I wish I were making this up. 
I was furious with myself for my performance, furious for my lack of preparation, furious about the impression I was leaving with my professor. People actually tried to point at the bright side by mentioning how nobody else did well, you still had one of the top grades, blahblahblah. None of that mattered to me. I failed. 
My point is this...I rarely found comfort in the fact that other people were sharing in the same struggles as me. 
(Ha! You thought we were playing connect-the-dots between anatomy class and Emily's femur, didn't you? Admit it...that's what you thought. Never forget I'm a bit of a self-absorbed prick. Moving on.)
Anywho, when Kate told me she had used Facebook and other sites to connect with other families with children who have PFFD, I thought it was great. For her. She'd be able to share experiences, make some new friends, perhaps find a comfort zone with everything. I chose to work on this blog. It would be my comfort zone. By the way, it's probably unnecessary to point out how this blog has turned itself into some kind of digital-age group therapy, thus rendering my previous point about not caring about other people with the same problems completely moot. Shut it. 
So, when Kate mentioned some of the families she had "met" online lived in the Dallas area, our recent trip seemed to be a perfect opportunity to finally get together with some of our fellow PFFD-ers. 
It was a fascinating evening. Burgers and dogs, kids all over the place and plenty of interesting conversation. Try and name another event where the question "so, does everybody have five toes" would NOT earn you a series of sideways glances and sharp whispers? (It's common for people with PFFD to be missing a toe or two.)
Everybody's story had its own twists and turns, but they followed a familiar path. There were meetings with local orthopedists. Vague reports. Difficult decisions. And we all talked about Dr. Paley like he was an old friend. Allow me to introduce you to some of our people.
This beautiful girl is Michelle. Her parents, Matt and Lisa, hosted the event and could not have been any nicer. Michelle's condition was like Emily's in that it was a complete surprise at birth. Unfortunately, x-rays showed her left femur to be about the size of a dime. Dr. Paley, miracle-worker for so many with PFFD, could do nothing, saying it was one of the worst cases he had ever seen. Still, Matt and Lisa found comfort in the diagnosis as it took the decision out of their hands. Her left foot was amputated which, when she is fully grown, will look like an amputation just below the knee. After watching her all evening, it clearly has not slowed her down. Not that she can afford to relax. She's expecting a baby sister in October and somebody will have to keep that kid away from her toys.
Ethan is one of the smoothest kids I have ever seen. I'm serious. This toddler has game. I would so be high-fiving him if my daughter wasn't on his radar. You should have seen him smiling at all the girls (he was the only boy in attendance,) and gently stroking their hair. His parents are going to have their hands full. They should be used to it. It's been that way since his mom was 26 weeks pregnant and pre-natal testing led them to believe that Ethan had a skeletal disorder that would make it difficult for him to reach full term. Abortion was suggested. Further testing erased thoughts of that rare condition and instead suggested a cancerous mass on his femur. MRI's were inconclusive. When he was born, he was found to have a short femur and a missing fibula in his right leg, but otherwise perfectly healthy. To say it was a relief would be an understatement. They'll be visiting with Dr. Paley on August 20th. 
This little firecracker is Abby. She is such a happy, social kid, looking for hugs from whomever was close by. Her PFFD was discovered during pregnancy which gave her parents a heads-up, but little else. Severity was unknown and, like it was for the rest of us, information regarding this condition was hardly common knowledge. Her situation is unique in that her femur is short and her tibia and fibula are also approximately two cm short of her other leg. They had just taken a trip to Florida to meet with some guy named Paley and are currently mulling over their options.
This one here is the reason most of you have read this far. You're well aware of her story. To most of you...maybe all of sounded horrible. It sounded, at times, insurmountable. And yet, after reading about other children with similar conditions, perhaps things seem a little different. Do they seem brighter? Do you feel more optimistic? I swear, I remember hearing a story about how these kind of situations are helpful, I'm sure I'll think of it. 


AS said...

This is the bestest post ever!! But I think you should tell the called a casting director and said "find 3 other really, really cute kids who want to talk to each other, maybe share a juice box and i'll add Ems and shoot their pictures!" The first picture should be in a magazine. Thanks for the introductions to these other 3. Of course you can see that PFFD is REALLY going to hold this group back! Just a gorgeous post!!!

Anonymous said...

This is a wonderful blog. The photos are beautiful. What wonderful parents you are. You really appreciate these little moments that come & go all too fast. I have PFFD, I'm 32, with my own kids. I just really love your blog. Your family is beautiful.

Anonymous said...

I know i probably have no right to post cause im not a parent. But i am 15 and i have PFFD and i just have some rough times. Not as often like i used to, i had to switch schools because i was getting so made fun of. I didnt exactly think it was going to be so hard when i figured out that i was "special". I recently had a guy say to me "Look your cute and all, but i cant go out with you because i would get made fun of." I cried my eyes out and it really comforts me that there are other people out there like me. I feel alone a lot like no one knows what i am going through.. but i have recently gone to Amputee Colition of America. Its an AMAZING place because its not just for amputees its for kids with limb loss disease. I found someone that was a year or two older then me with PFFD and me and him are like brother and sisters. I just wanted to say to everyone that has to go through what i went/go through-- Everything will get better, and i promise that people get better. if you go to this camp you will see what i am saying i never thought that i would like who i am. but i feel confident and beautiful. I like (well sometimes) who i am, I have on and off days.
this is my article about the camp and i hope that parents will send there kids to this camp because i am relived everyday i am there.

Anonymous said...

Great blog. So lucky to have families in your area to talk to. We have yet to connect with anyone other than online. To the 15 year old who posted: thank you! As a part of a toddler (18mos) with pffd it helps me so much to hear from a teen. I like to know what life may be like as my son gets older and only other kids with pffd can tell me.
Shannon, Saskatoon Canada

Anonymous said...

Just wondering do you have an email I can contact you on. Our little girl is due in may and has been diagnosed with PFFD.

Thanks so much!