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 😉

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.

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

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 🙂

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 6^th 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

Well Said!!! in response to “Rosie” O’Donnell discriminating interview about little people

 

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.

Happy 5th Birthday Leah!!!

FIGHT FOR BABY CHRISTIAN

After Leah was born a made a promise to myself that I would do all I can to raise awareness about dwarfism, because of dwarfism I have come to meet the most amazing people all over the world , One such mom is Sareta and her little son named Christian.

Thanatophoric dysplasia is a severe skeletal disorder. Type I is characterized by extreme rhizomelia (disproportion in length of upper arms and thighs), narrow thorax, a relatively large head, normal trunk length and absent cloverleaf skull. The spine shows platyspondyly(flattened vertebral body shape with reduced distance between the endplates)  the cranium has a short base, and, frequently, the foramen magnum is decreased in size. The forehead is prominent, and hypertelorism (wide set eyes) and a saddle nose may be present.

With all odds against him on  12^th April 2011 Christian Simon McRann was born, he was diagnosed with Thanatophoric Dysplasia Type 1.

He was given little hope of leaving the delivery room alive .He is 2 month old and is holding on to life Christian smiles, opens his eyes and stretches his little arms and legs.

All I know is God DOES care, and HIS WAYS are above our ways! I can’t understand why God works the way He works sometime, but I  always quotes  this verse; “For all things work together for good to them who love God, to them who are the called according to His purpose.” (Rom 8:28)

Nothing is Impossible

~~~Author Unknown~~~

Prayer is the answer to every problem in life. It puts us in tune with divine wisdom, which knows how to adjust everything perfectly. So often we do not pray in certain situations, because from our standpoint the outlook is hopeless. But nothing is impossible with God.

Nothing is so entangled that it cannot be remedied; no human relationship is too strained for God to bring about human reconciliation and understanding; no habit so deep-rooted that it cannot be overcome; no one is so weak that he cannot be strong. No one is so ill that he cannot be healed. No mind is so dull that it cannot be made brilliant.

Whatever we need if we trust God, He will supply it. If anything is causing worry or anxiety, let us stop rehearsing the difficulty and trust God for healing, love, and power.

Into the experience of all there come times of keen disappointment and utter discouragement–days when sorrow is the portion, and it is hard to believe that God is still the kind benefactor of His earth born children; days when troubles harass the soul, till death seems preferable to life.

It is then that many lose their hold on God and are brought into the slavery of doubt, the bondage of unbelief. Could we at such times discern with spiritual insight the meaning of God’s providences we should see angels seeking to save us from ourselves, striving to plant our feet upon a foundation more from that the everlasting hills, and new faith would spring into being.

So I call on all my friends and blog readers please keep Christian in ur prayers and send some positive thoughts his way for God has a plan for his life no matter how little he may be.

click picture to vist christians website

The M word…. in South Africa

Most in the little people community are aware that the word Midget is unacceptable, it’s a word that has a bad stigma attached to it. I will very briefly explain the history behind this word for those that don’t know… So here goes (I hope my facts are in order). In the 1860s Midget was the word used to describe a little person later on in the 1880s it was used in the freak show/ circus industry where little people were put on public display to tickle to curiosity of those who frequented such events. As time moved on by the 1930s the word progressed and was frequently used to describe small vehicles and aircraft.
Before you continue reading please note that this post is with reference to South Africa and the use of the word MIDGET in South Africa

The reason for me starting Raising Leah was to create awareness about dwarfism in South Africa. I remember when I was pregnant with Leah, we were not quite sure of her condition and I distinctly remember saying to my husband “what if our child is a Midget” at that time I had no idea that the word was frowned upon, it was only later when she was born and I started researching dwarfism that I realized that this term was a insult in the LP community. Due to a serious lack of information regarding dwarfism in South Africa I found most of my support online and today I realize how very different the way of thinking is in South Africa. I decided to be brave and I sent out this question to my LP friends living in South Africa.

” Do you find the term Midget offensive”

Surprisingly most that responded said they “didn’t really care”, One said he has no problems being called a Midget a few said its the WAY the word is used and the context in which it is placed that upsets them.

The most surprising response…a few said they prefer the reference of Midget to Dwarf.

I could spend the rest of my life trying to figure this whole thing out but I have decided what it boils down to in the end is “What is your PERSONAL preference” I personally am not in Favour of the “M” word, and I know there is a list of “acceptable reference terms for South Africans” but its really of no use as this list just gathers cyber dust and is not brought to light for public awareness. The big lesson for me is realizing that what bothers me does not necessarily present an issue for someone else. But when all is said and done the greatest lesson of all is respect. You have to Respect those around you, in order to gain respect for yourself.

From my own experience when I am out with Leah, people often approach us saying “ She is beautiful, is she a MIDGET” I have to remember these people have no association with dwarfism it does NOT affect their lives so it would not be fair to view this as disrespectful and offensive? And this is were most parents go wrong, you get you back up and that “M” word just makes you see RED and your answer might sound something like “OMG how dare you call my child a MIDGET” that’s just going to push this person away and all education is lost. The best approach for me thus far has been “This is Leah and yes she is a Little person / dwarf we don’t really like the word Midget its not a very friendly word in the little people community”

Please don’t misinterpret what I am trying to say, there are those that Hate the word. Sadly there is ABSOLUTELY NO education regarding this matter and South Africa is clearly slacking with creating awareness surrounding the use of acceptable terms regarding special needs and disability. The rest of the world is leap years ahead of us regarding this matter. Many new LP parents feel they want to avoid conflict so they just tolerate everything even when it’s bad, and eventually they become desensitized to discrimination.
In the end I guess it’s up to the individual they need to decide if they are okay with this word or not. We all talk about growing awareness but what’s the use if there is no action,  its no use hoping that some miraculous terminology awareness cloud will hit South Africa and educate the nation overnight lets take a stand and start ourselves.