Stupid Achondroplasia :)

On a recent shopping trip, Leah decided it would be a fun to measure her height in the kiddies clothing department.  We have been stuck on 107cm for a quite some time and she is well aware of this “no growth progress point” but really?…… she has dwarfism so we are not expecting much growth anyway.

So as we step up to the measuring chart I say “WAY TO GO LEAH you are 107cm” and Leah then responds with “This stupid achondroplasia …..Mommy how many times do I have to BEG you to get me heels? I was thinking that it was going to be a sad moment that would need some pep talk, but after a long silence she said “Mom make sure my heels are blinged up I want to wear them with my tight black pants” No pep talk needed just a little girl dreaming of her first pair of high heels 😉

raising Leah

Luke 1: 37

Instead of posting loads of dwarfism anatomy facts, I decided to share some of my favorite verses of encouragement for the month of October. I think each picture captures Leahs personality perfectly; what you see is what you get… Leah is a happy, fun loving little girl, always smiling and affectionate, she is truly an amazing kid!

luke1:37

luke1:37

Dont let them steal your time to shine….

It seems Leah is doing so well that she leaves me with nothing much to say these days lol.  Her progress at school has been awesome thus far. She loves being with her friends and loves learning new things every day in fact things have been going so well that Leah was recently awarded with most exemplary student. Needless to say the whole family was very, very proud of our little girl.

 

A few days after this event some dark clouds seemed to try and steal our sunlight. Leah and I usually have our girl talk time in the kitchen while I’m cooking dinner but this particular day she was unusually quiet and when I questioned her as to why she seemed  so down, she told me that one of the kids in the class told her that their dad said the only reason why Leah was selected as exemplary student was because of her dwarfism and that they feel “sorry” for her and she got the award because she has a disability. In a instant I was filled with rage and I had to bite my tongue as I did not want to show Leah how this affected me, after all me doing a melt down is not showing her much encouragement on how to deal with these heart breaking moments, so I took a deep breath and I asked her how it made her feel when her friend said this, her answer was “I don’t really care anymore she is just jealous that’s all”. She made me so proud and I was really surprised at how something that enraged me to my core did not mean anything to her. I guess if I had acted out on my emotions she would be left doubting herself.

 

But this is my blog and now I get to say my say….

 What does enrage me is that a PARENT (adult human in this case as ignorant as a rock) would put forward the suggestion that the only reason Leah was awarded is because “they feel sorry for her cause she is a dwarf”. This angers me cause it is these parents who teach their kids that disabilities is a “feel sorry” situation and that people with disabilities cannot really achieve much. Whatever gave you the idea that Leah gets special preference at school? The sad reality is you as a parent lack common sense and the lessons you instil upon your child will force the new generation to carry on with your selfish ignorant thoughts towards people with disabilities. It’s probably parents like you who park in parking bays reserved for those with disabilities because you are too lazy to make use of your fully functioning legs that extra few meters of walking is just too much for you to bear. Its parents like you who suffer from the worst know disability to mankind and it’s called IGNORANCE and you breeding this disease amongst your kids. I don’t blame your child I blame you for planting your seed of ignorance in their young growing minds.

 

I’m happy that Leah has not allowed any negativity to break her spirit, I’m happy that Leah has the support of loving teachers and friends at school, It’s just sad that there is one parent out there who has serious issues to deal with and I do hope you read this post and somehow find the wakeup call that might cure you from your own sad insecurities.

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The folder of webcam fun…..

While searching for a document on my computer the other day I came across a folder containing loads of pictures of Leah and her sisters. There they were, performing in front of the webcam and clearly loving every minute. There are some shots of Leah were she had the camera to herself all of which I found very entertaining. The say a picture paints a thousand words, I think these pictures captures their personalities perfectly, full of fun and always ready for a laugh. Thought I would share a few…….THERE ARE LOADS, it was hard to choose hahaha

raisingleah

raising leah

2013-04-02 20-49-00.926

2013-04-02 20-50-40.571

2013-04-02 20-49-04.197

2012-08-05 14-31-40.871

2013-01-07 13-00-52.422

2013-04-02 20-48-46.163

GOTTA LOVE MY GIRLS……THEY JUST LIKE THEIR MUM 🙂

Lots of new starts

Happy New year to all and I hope your year ahead filled with all that is good!! Last year was kind of a slow blog year for me…. but that is all about to change this year 2013 has its fair share of excitement in store for us. Leah will be starting main stream public schooling so I look forward to see her progress. I must admit I am struggling to shake my protectiveness but this day was bound to come so expect lots of pictures and updates on her progress.

I will be keeping a close eye on the BMN-111 human trials starting soon and I will try my best to update on the progress on a few of our little ones who are partaking in these trials. If this proves to be successful it will truly be an amazing medical achievement as it could potentially eliminate the need for decompression surgery both early and late in life, as well as surgeries to correct obstructive sleep apnea (tonsillectomy/adenoidectomy for the purposes of opening up the airway, etc).

So here is to a 2013 filled with positive energy and lots of updates 🙂

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So i have Achon……

It’s been fairly calm the last few weeks, Leah’s health has been good, and we have been enjoying the last few weeks of summer, sadly the air is cooler than there is that distinctive chill in the evening breeze. So I guess we going to keep a close eye out for that nasty flu bug as we heading for that time of year again… Winter!!!!!

I must let you in on Leah’s new favourite word “Achon”. As you have read before she now realizes that she is a little person. Its not easy because we have moments where I can see she seems really sad about it, she often asks me when she will be taller and sometimes she gets frustrated when she cant reach things, or when her foot wont fit in the pretty pink shoes, or when her head can fit through the neck of the pretty sweater. I feel her emotion and it’s hard for any mother to see the disappointment in their child’s eyes, even when it’s not something you would consider a serious issue.

But there is a lighter side to things, Leah has a great spirit, she does not let disappointment get the best of her after a while she seems to accept that sometimes its just not a bright idea to force her cute foot into the shoe that clearly wont accommodate that achon instep, sometimes when the sweater wont fit, she runs around scaring her sister saying “Leah has no Head” we just have to have a giggle because I realize that she is slowly starting to accept her body and most of the time she seems to be fine with it especially when she rubs her round belly and says “make a wish” LOL, but what  I love the most  is when I see how her captivating personality simply makes people fall in love with her she has a such a pure energy with so much love to give, at the same time she has a really good sense of humour…quite sharp at times  let me give you some priceless  moments…

Recently a friend of mine gave birth to a little boy, when Leah saw the baby she said “ Mum he is way to small, I think he has Achon” . One evening I had a problem getting the girls to eat their vegetables and without thinking I said “You are not going to grow if you don’t eat your vegetables” Leah said  “Duh… I have Achon, not going to grow no matter what I eat” that one had me burst out laughing and how was I to counter that comment. The best is when she met some kids who are younger and taller that  she is and I  said “Leah why don’t you go play with your new friends”, Leah rolled her eyes put her hands on her head and said “ Oh my gosh why do I have to play with  the Big Babies I have something else to do right now!! ”

So unfortunately there are going to be sad times, but best of all we will have tons of light-hearted happy moments I love these moments cause they make you realize that things are actually perfectly balanced. I have always been a strong believer in the energy we hold within us and it’s so important to keep that energy positive in our home. Leah knows that she is unique inside and out and just being around her makes me realize that feeling down is only but for a moment. No matter how bad things may seem at times this too will pass, and as a mom I focus on assuring her that its okay to be sad, its perfectly acceptable t laugh at yourself, and never let those ugly negative people steal the joy you have within you.