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

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

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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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Just wait and see:)

And we are back, I have been really slack on the blogging so its time to get rolling once again and keep the updates going.

Last month Leah celebrated her 6th birthday, Yeah!!!!! I just cant believe that 6 years have gone by so fast. It feels like yesterday  when I was sitting on my hospital bed with this tiny baby in my arms and wondering “What now will we be Okay?”

Needless to say there was nothing to worry about, Leah has grown into a happy, healthy, beautiful little girl, and she has become so independent. She is doing so many things on her own, I love when she takes a bath and calls me saying “Mum I need your hands for the hard to reach places”. I know that she will let me know when she needs me, and I have stepped back to allow her independence to grow.

I have noticed that people staring at her does not bother her half as much as it bothered me, so I decided to ride on her energy, and react only when she tells me it upsets her. I realize me reacting at every awkward situation was actually making her uncomfortable and embarrassed. What I must remember is, she is no longer a baby and she does not need me to fight every battle for her,and as she is growing she is busy learning to cope with emotions and  to understand her feelings, and I need to respect her feelings.

 Best of all, I can see that nothing really gets Leah down, to be honest the times were Leah may have been sad are so few to mention, and when she is down or stressed she will let me know that she needs me to step in or just give her a cuddle. These moments remind me that I need to be her mum and not a warrior ready to battle evil all the time, she just needs me to love and support her and I’m happy and more content than ever. It took me 6 years to get to the point were I can truly say I’m Okay, and now when I think back to sitting on the hospital bed with my tiny baby, I’m sure Leah’s little hand gripping my finger was just her way of saying “Its all good mum we will be okay just you wait and see

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What do you think of this??

What do you think of this………..? I don’t know what to think right now ………..but I have been bombarded by people sending me this link thinking I would see some kind of humour in it, and what confuses me the most is the OPRAH the queen of talk shows who has interviewed Little people on her show and knows exactly what they face from the ignorance of a few in society allows this to show on her network????? So I ask what do you think of this.