Letter from a reader

I receive several emails a week from parents of children with fibular hemimelia. I love receiving these emails and know that a large portion of the readers who find my blog are trying to search for information on this condition. I try to keep that in mind when I write my posts. I want to document this part of our lives with the hopes of helping others.

A woman named Hannah wrote me this incredibly inspirational email. I asked for her permission to publish it because I thought it would be an encouragement to many.



Hannah's letter:


I read your blog and was incredibly moved by your story.  I was born with fibular hemimelia and after two years of painstakingly and agonizingly considering all possible options my parents decided to amputate (Syme's amputation) when I was two years' old.  Having spoken to my parents now as an adult, I can only comprehend a little of what they must have gone through and I can't thank them enough for the courage, like you, that they showed in making that decision.

I have been very lucky in that I've very rarely experienced pain due to my prosthesis, I was "bullied" once at school and before I could even open my mouth to respond a group of kids had already jumped to my defence, I was high-jump champion at primary school, I don't have to queue at theme parks, I went to University and got a degree, I moved to Switzerland and I'm now engaged to a Swiss guy and preparing to start my own family.

I don't know if this message can possibly help you but I wanted to assure you that your Anna is normal.  Living a life with a prosthetic leg is different, certainly, but it forms such a miniscule, tiny part of my life that both I, and the people close to me, often forget I even have it.  I'm not a courageous or outstanding person, I'm normal.  I've been through all the stages with my leg, from a child wanting to be like others, being proud of it because it gives you great stories, as a teen wanting to wear high heels and now as a 27-year-old I'm engaged to a wonderful Swiss boy and preparing to have children of my own and being incredibly proud of my prosthetic leg (please see pic attached).  There are obstacles to overcome, I will have to wear flat shoes under my wedding dress (not such a problem considering my fiancee is only a little bit taller than me), if I suffer with severe water retention during pregnancy I may have to use a wheelchair for the last month or so and I have a little panic attack when I have to walk down a steep mountain slope (it would have been enough to find a nice Dutch guy instead of a Swiss one).  I think you'll agree that there are far more serious problems in life...

If I can be so bold as to share with you some of my own experiences which may or may not mean anything to you, now or in the future.

Anna will have trials and difficulties as she grows up but they will be because she has too much homework, she doesn't know if the guy she likes, likes her or not, she has nothing to wear and she hates her wardrobe, her hair won't go right, she has a spot on her forehead (which only she notices), she's fallen out with her best friend over she doesn't know what (it will last two days).  All these trivialities will completely and utterly bypass any consideration she will have for her leg.  In other words, she will have all the normal worries of a normal child/teenager/adolescent/young adult.

I'm not somebody who takes everything on her chin, I'm not a super-natural person, I moan about having to climb up a lot of stairs, about having to get up early for work in the morning.  But I've always, thanks mostly to my parents, had the outlook that I am completely normal.  I've never considered myself "disabled" and I've always been encouraged to do everything other children were doing, my Mum often dressed me in skirts because she liked them.

Anna will be an individual and will deal with her leg in her own way but I think a good approach is treating her as a completely normal child, encouraging her to do everything her peers are doing and allowing her to find her own limits rather than pre-defining them for her, just like all the other children. 

Enjoy her and particularly the comic moments that her leg will undoubtedly bring (I remember an April Fool's day trick of placing one of my spare legs under the cupboard at school so the foot was sticking out and we shouted to the teacher that a pupil was stuck - their face when they pulled out my leg was hilarious and it went down in the school legends.  Unfortunately my role in the trick was immediately apparent...)

Good luck and have fun!  Best wishes from Vietnam (I'm currently on an 8-month world tour and the kids here love my leg - it's an immediate icebreaker!).

Hannah