Tuesday, 7 May 2013

What I think of limb lengthening - part 2

Please don't read this post without reading the preface. These are my thoughts, and I have these thoughts for my child, Fiona. I don't believe for a second that my way, our way is the direction everyone else should follow.

My child is not her medical condition. Fi is a toddler, a young girl; she is a daughter, a sister, a cousin, she is daddy's girl. She is a person, she is a human being, with intelligence and emotions, both of which she has so much of, she can hardly manage them at this stage of her development as she has entered the terrible twos. She may be shorter because of her medical condition, but every millimeter of her screams of personality and originality. If she didn't have the physical limitations, she would certainly go into gymnastics, she has a remarkable ability to copy her older sister's performances.

She is NOT a dwarf, a little person or an LP. She is not a label. She happens to have a medical condition which impacts the way her bones develop in her body. She is a person with a medical condition that impacts her growth. I may use the term dwarfism sometimes, but there won't be any other nouns used by me to describe her condition. I don't call the man who had a heart attack "the heart-attacker" (or heart-attacked). I don't call a boy with autism, "the autist". I don't call our friend with diabetes, "the diabetic".

Do I like her medical condition - no, quite the contrary, why should I? Do I like the impact it has on her body, not at all. I don't understand why this question is even a question, would a mum whose child has CP like the impact the condition has on their child, or Perthes disease, or any other physically limiting condition.
I haven't made up my mind yet if dwarfism is a disability, it certainly constitutes to it in Ireland, for now, I will use the term physically limiting. Does this mean that I don't love or accept my child for who she is? Not at all. This argument against ELL always baffles me, I can still love my child and accept HER, but want to change the impact of her medical condition. There is no contraindication here. I am not my body, my body is part of me, but I have my mind, spirit, soul. And there are lots of things I don't like about my body, it doesn't mean that I don't like myself.

Fi also happens to have a very prominent squint, so we went to the ophthalmologist and she got glasses, she may also need surgery to correct it. I would be considered a negligent mother not to pay attention to her developing eyesight. I think her squint is quite cute actually, if it wasn't causing her heath issues in the long run, I might not be concerned about it.

 We also discovered that she can't hear very well because she has middle ear dysfunction, so she has had 2 surgeries for that so far and will have many more. Of course I love her for who she is, but I want her to have the ability to see and hear, so she needs to undergo treatment. But didn't God create her with the squint and the middle ear dysfunction, don't these belong to her identity and therefore shouldn't be changed? The list could go on.

To me it is as simple as that. I consider the fact that she may never be able to clean herself after going to the toilet, because her arms are too short, part of her medical condition. The fact that she wears 6-9 months trousers at the age of nearly 2 and is nowhere near being able to walk any significant distance is also the result of her medical condition. She is developing tibial bowing, the same goes for that. Yes, I think her legs are adorable and absolutely kissable, but chances are they will cause her pain and discomfort. It is not a cosmetic issue to have lordosis and back pain, or to struggle with elbow extension and reach for life.

These medical symptoms to me don't constitute an identity which should be assumed by her, which should become her, because she was randomly born with HCH. These are all medical issues, and rather significant ones at that. So as Fi's mother, it is my job to do exactly what I do with the squint, the hearing, and every other ailment, any of my children have: to do my research and become knowledgeable about the different treatment options so that I can make a well-informed decision for her, with her. Thankfully, we are entering a new era of ELL, the internal devices will make a huge difference in the safety, pain levels, complications, etc.

In the next part I will write about my dilemma of conditioning, brain washing and children's ability to make long-term decisions for themselves.


  1. You explained this so eloquently!

  2. I love hearing your perspective, which I know my husband shares 100%. My opinions are more ambivalent right now, but w/ Belalu's strong personality, I know that this will be her decision, not ours, and we'll both support her completely when she makes that decision.

  3. You and I have very similiar views when it comes to this skeletal dysplasia diagnosis. I will always respect everyone's views, wishes, and wants for themeselves and their children. However, I will do what I think is best for my child. He must live here in this world, in this town, with these people that surrond us. Therefore, I must raise him to be a strong, likeable guy. But, I WILL research any and every therapy there is for him. I'm still hoping and praying that the peptide makes a BIG impact on our future. Hugs to you mama!