OUT OF SIGHT OUT OF MIND

I am disappointed , “Hayden DOES NOT SUFFER FROM Dwarfism”…..the reporter who wrote this should really sharpen her skills…Does he look like he is suffering?…But what is sad is that this is not the first time and it wont be the last time this happens. I don’t blame the children, because children can be cruel, but children learn by example. In this case the Principle has failed dismally in making a change, he could have changed the mind-set of the children in his school, he could have instilled pride into his students by making them aware of difference , by teaching them acceptance, by putting a stop to ignorance…. he could have done all of this but instead he chose to say that this child does not belong in main stream society, he could have taking 5min of his time to finds out more about this child’s condition on google,  but he said this  the child needs a “school for mentally disabled kids” he needs a “more suitable school”…. and the Western Cape Education Department says “They are aware of the situation”  as if that’s of much help. Does he even know what a bully is? He obviously does not care… as the old saying goes “OUT OF SIGHT OUT OF MIND”, this is why stigmas and ignorance grows How do we expect change to happen when you are left with IGNORANCE  in charge…. What if his child was this little boy?

raising l

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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Allowing “Room” of Disappointment

Sometimes I question my self, I wonder if those who you think or should I say expect to understand you really do understand your situation … I have had a heavy heart about a few issues over the past few weeks and what better place to vent that here in the room were my true support lives.

Recently some friends invited us to a show, the setting of this show is based on the old circus style. The mystical enchanted type of show with fairies ad goblins. The reason why they invited me was because the act involves a little person, but he is depicted as a freak and he falls around and basically makes a fool of himself, I decided its not something “I” would want to attend much to the disappointment of my friends, and during the whole “should I stay or should I go” debate someone says “It something you should get over because you could get good contacts for Leah to use in future as there is not much she can do with her life anyway” Surprisingly it was not anger that hit me, the anger set in much later…. What did hit was the shock of someone you love disappointing the support and understanding you thought they had.

These are the very “friends” who say “oh Leah you are so cute, special, a brave little girl”, but yet these “friends” don’t really believe in her ability?  So forgive me if I question my belief in you being a true friend, To me a true friendship conquers boundaries and feeds love and encouragement into any situation, but guess that’s my opinion on what friendship is.

“Have you seen Leah’s clothing, they never fit, the sleeves are long and the pants are rolled up why cant Charmaine just get clothing to fit the child properly, she looks neglected”

I think this hurt the most, in fact what hurt the most is it was said in the company of Simone and Nicole, Leah’s older sisters. I take pride in my 12 year old daughter Simone for clearly stating the following  “ If you haven’t noticed Leah has dwarfism and if you want to find the perfect “fit” shop bought items then I challenge you to do so… you don’t realize how my mum has to take every item into consideration when we have to buy Leah clothing, a simple neck hole can be an issue the reason her jeans are not fitting the waist 100% because she has tiny hips, her legs and arms don’t fit cause they are short and cutting them means she just gets one season of wear so we make a neat turn-up….. consider that before you judge my mom as being incompetent?  … I thought that “you” of all people would understand.

“Thanks Simone mummy loves you lots and I know you got my back!!!! 🙂

So I guess I must not forget to leave room for disappointment because there will be times when you encounter people who “look at the pictures but don’t really read the book” and it seems I have quite a few of them in my life… but not to worry at least I have my Facebook and Blog family and I know when I enter that room the word disappointment is not part of our LP vocabulary.

If its not Discrimination then South Africa has let me down

A few weeks ago some really discrimination jokes were made on a popular radio station…. The jokes were as follows

  • Does high jump discriminate against Midgets
  • Why do Midgets smile while playing soccer?? Because the grass tickles their bum

I contacted the station in order to make them aware of their actions but not receiving much joy I took it a step further, I approached the Broadcasting Complaints Commission of South Africa thinking this would be the help needed in order to raise awareness against discrimination against people with disabilities. Sadly the commotion only protects Race, Gender, Ethnicity and Religion and they don’t feel that the jokes made during the shows in question amounted to hate speech towards people with this condition!

Angry is an understatement to how I am feeling right now the only way I can express my feeling on this matter is to say im pissed off to the core of my being …….how is it possible to give the rights of the disabled such a huge miss? Do they understand the meaning of DISCRIMINATION?? AND IF THEY DO WHAT HAPPENED TO IT??

So help me out here… the way I see it if you live in South Africa it’s perfectly acceptable to joke about the physically and mentally disabled??  Did they think I was going to take the conclusion they have given me and say “oh okay sorry to have wasted your time I will just ignore the midget jokes in future”……… NO WAY im taking this all the way to the top I’m tired of all these technicalities and loopholes that allow people to get off the hook so easily. Im not accepting the answer I was given………… I’m going to make it my mission to get the answer I want, it is UNACCEPTABLE AND DISCRIMINATION and I wont stand for it… I will not allow my child to grow up in a country that is going to let her down so I have taken this one to the Human Right Commission of South Africa.

The children’s Rights act as stipulated by the Department of Justice and Correctional development of South Africa states

“ I HAVE THE RIGHT TO BELONG EVEN IF IM DIFFERENT FROM OTHER PEOPLE…………AND I HAVE THE RESPONSIBILITY TO ACCEPT OTHER PEOPLE WHO ARE DIFFERENT FROM ME”

How are you being accepting when you allow the media that has access to thousands of listeners to joke about another persons disability and use degrading terms like Midget on live air???

How are you creating awareness  when you allow a radio station to spread ignorance to the public???

NO SURGERY!!!!!!!

The past couple of days have been hectic!!! There have been many questions surrounding Leah’s surgery and after some further pre-surgery assessing, the doctors have decided not to go ahead with the surgery that was booked for Friday this week.

Lets recap… during Leah’s first ENT appointment in February this year the doctor decided to remove her Tonsils and put in the ear tubes. The ENT who examined her at that specific time told us that the tonsils looked  “big” so we should remove them; it was then that her surgery was scheduled for July the 17th. .Now I know it’s a long wait… but in South Africa if you are not knocking at death’s door you will wait, even if it means you have to wait 6 months… like we did. On Tuesday July 2nd we had an appointment scheduled at the ENT clinic to do all the necessary checks needed before Leah’s surgery … so what I decided to do for this post is to take you on a quick journey through the South African public health system just so that you can get a feel of what a trip to hospital is like for most South Africans who cannot afford medical insurance.

First we arrive at the Hospital at 6:00am and we hand our appointment card to the receptionist… then we take a seat and wait for Leah’s name to be called so we can collect her health record, at 7:30 am they call us we collect the record and proceed to the ENT clinic which is upstairs, there we once again place our appointment card and health record in the ENT reception box and we take a seat, judging on the amount of patients in the room before us we get number 42 stuck on the folder… so we are number 42 in the queue. I need to use the loo but unfortunately there is no running water in the toilets and they are in a state of UTTER DISGUST, so I decide to wait till we get home… so no more coffee intake for me and thank God Leah still wears diapers. At 11:30 (by this time my bladder has increase to twice its natural size) it’s our turn to see the doctor; we are informed that the rest of the staff is on Strike in an attempt for a pay increase. Some doctors in the Western Cape and other provinces have decided to “down stethoscopes” to protest their low income. The doctor then proceeds to ask me “So… Why are you here” Hmmmmmmm… “I don’t know Doc.. I just love hanging out here like the rest of the parents in the waiting area” needless to say he does not find my comment amusing. So I explain the situation and the doctor then decides to read Leah’s folder and says “Okay… you need to do a ear test “ but” that clinic just closed due to the strike, so what I will do is send you for you blood tests and then you come back to me and sign the surgery consent form” At that point my stomach turns and I feel distinctly uneasy as we are waiting for Leah’s blood test. I just could not shake the voice telling me not to sign the form just yet, Ashley just shook his head and said “ This doesn’t feel right” When we retuned to the doctor, he reschedules another appointment for Monday 6th so that Leah can get her ears tested one more time before the tubes get put in. We leave the hospital at 3:30pm. On Monday 6th I do the whole process again this time we finally get her ears tested the right ear is perfect but she has fluid and has lost some hearing in the Left ear, there is a distinct change since the last ear test in February…. I thought this would be enough motivation to have the tubes put in but the Doctor said it is not reason enough and we should come back in December for another ear test so I figure “Hell Yeah see you at Christmas we will just place a ear flap over the left ear that will probably be deaf by that time”!!!!!!!!!!!!! At this point I have had enough… and I am tired of being sent from pillar to post and I demand further test and reasoning…. And finally I get the attention of another Doctor that immediately takes over.

We spent the rest of the day in and out of tests to make sure the surgery would be in Leah’s best interest the final test was a sleep study and the results proved that it was not necessary to remove her tonsils as her breathing was fine, and the doctor seemed optimistic that she would actually improve as she grew… so it was not necessary to do the tonsil surgery but what about her ears???…. What I can’t understand is why they do not see the urgency in doing the ear tubes?????  The fact that Leah’s Left ear has become WORSE and we have been through 6 EAR INFECTIONS this year alone… is that not reason enough to put the tubes in???? I’m confused….  And at the same time I am also relived that we don’t have to do the tonsillectomy.

Leah has been left utterly traumatized by all the medical examinations and blood samples, I have however decided to go for a second opinion about Leah’s ears, I do believe that this is something you just cannot leave unattended. What I have come to realize is that in the South African public health system you are nothing but a number and for this reason I urge all parents of little people ESPECIALLY IN SOUTH AFRICA to take note of the following:

  • Educate yourselves on you child’s condition and the health issues linked to Achondorplasia or dwarfism in general.
  • Don’t be afraid to question the doctors on their knowledge of Achondroplasia, and if they have worked with Achondroplasia patients before.
  • Get the stigma of “my child is just small” out of your head because there are some big differences between a “normal” average height child’s anatomy to that of a child with dwarfism.
  • Educate yourself about surgical procedure your child may have to have done so that you are fully aware of why it will benefit them in the end, this in turn allows you to be clear on all the risk factors involved when performing a surgical procedure on a patient with dwarfism.
  • Educate yourself on anesthetic precautions in dwarfism.
  • Last but not least listen to your instinct, we all have it …and sometimes it should not be ignored.
!!! DREW BLOOD FROM MY FINGER!!!

!!! DREW BLOOD FROM MY FINGER!!!

LITTLE ME IN THE HOSPITAL HALL WAY

LITTLE ME IN THE HOSPITAL HALL WAY

HAVING A BREAK FROM ALL THE FUSSING

HAVING A BREAK FROM ALL THE FUSSING

LETS GO HOME MUM

LETS GO HOME MUM

Officially a Dwarf

LEAH

On a resent visit to the mall, I noticed that almost every person I walked past took a back take when they saw Leah, some just using their eyes as they walked past us, others even went as far as stopping to stare…. I don’t want to sound like im exaggerating about this matter; most of the time I just keep quiet because I feel that all people ever hear me speak about is Leah and Achondroplasia!

I feel I have to vent some feeling on this post. The reason why I know that the stares were more noticeable is because my six-year-old daughter Nicole turned to me and asked why everybody was looking at Leah? This is when I realized that there are no more … “I cant notice so much” or the “im not quite sure” stares, this was Official Leah has taken on the full appearance of a “little person” and the reason why its not noticeable to us as her family is because we are with her everyday we don’t see her as being different.

I have brought this topic up during a conversation with one or two of my acquaintances and I was told that being the parents of special children we (the parent) tend to overreact to the “staring thing”, and sometimes people just stare, they don’t actually mean anything by their reaction. At the time of that particular conversation I thought that maybe this person was right and just maybe I am overacting…. but today after some long hard thinking I beg to differ. I distinctly remember one of my first “childhood life” lessons taught to me by my parents, and that was not to “STARE” because it can be considered rude, and if you do happen to see something that you would like to know more about, ask your questions tactfully in order to get an answer.

Society tends to dictate what is “normal” and “acceptable” and I know that there are some individuals out there who believe that people with physical and mental disabilities don’t have much purpose or value in our society. I was once asked the question of weather I would send Leah to main stream or special needs school, when I gave main stream schooling as my preference for her, I was horrified at the reaction I received “ Why would you want to main stream Leah when clearly she is not going to fit in”….  “Why”…   There might be social acceptability issues because she looks different??

SHE IS SHORT!!!!!! Leah is not mentally or physically challenged, who gives them the right to decides who fits in, and what is socially acceptable?

I have come to the realization that I will never be able to change the way strangers react when they see Leah for the first time. I sometimes wonder if I have worked through all my emotions regarding Leah’s achondroplasia, I know that there are some issues that will stay, the biggest being the sense of protectiveness, I will always be protective of her, especially while she is to young to defend herself. I have promised myself that I will raise her to believe that she will be a fully capable young woman who can do anything she sets her mind to. It is disappointing that some people will never change and they have made up their minds as to what is acceptable and what is not, sad thing is there are so much more to life, and they will never experience the true joy of being free spirited, their judgmental ways will consume them as they try to fit into a world that they believe is perfect.

So I say thank goodness I am not one of them… those are the people I fight against, I have made it my mission to raise awareness about Dwarfism, and I will fight to have my child live and enjoy life just as any other “normal” child would, with the freedom of choice to do what she feels will fulfill her dreams.

My hope is that instead of a blank stare, come over and ask her name so that next time you see us you will say, “Hey look its Leah”, instead of  “Hey it’s the little Dwarf girl oh shame”. I really hope that this day comes soon because Leah is such a blessing to us, and we would love to have her touch your heart and be a friend and blessing to you as well.

Lost friendship and broken trust….

Over the past few months, I had been receiving some ugly comments on Leah’s blog…. the person sending them was not to clued up on how blog comments worked because little did she know that I have to moderate them first before they could be viewed by the reader… Unfortunately I was still subjected to reading what this sick person had to say about my family and especially about Leah.

I remember sending an e-mail to Tonya (Knoahs mom) asking her if she had ever been in this situation. I initially thought it was as sick person like the one who had stolen pictures from the LPOA site to create that nasty website aimed to poke fun at people with dwarfism… I tried to trace the e-mail address  were the comments were coming from with the help of a very clued up  computer whizz  friend, he concluded that it was someone in South Africa but that was the only information he could come up with.I decided to  e-mail  the address and  to all my friends with the hope that they might recognize it from somewhere.

You decided to forward a joke to a few friends from this “spare” e-mail and that’s when I received the call early Sunday morning informing me that I do in fact know who the user of the e-mail adress is and the joke was copied to me as proof…. So I went onto my facebook account to announced that I had finally traced to sick person who was commenting on Leah’s blog “I was shocked that you called me to ask who it was  when you knew very well you were the culprit …

This is for you MY SO CALLED  friend

• You called me “An attention seeker”
• You mentioned that there will always be “employment for M*#%ts at the circus as they are good for a laugh”
• You said that I should go to the vet and ask them to “Put my broken bird down”
• You said “stay away from sharp object her “fat head” might pop

The wont post any more as some comments are really graphic….

Dear Friend
I trusted you, I confided in you, you held Leah in your arms  when she was just 3hrs old… you said she was special and called her your little butterfly.

When I asked you why you did this you said, “Im tired of seeing Leah get all the attention and my child is always ignored when she was around.”???????????

Did you ever stop to think that it’s not the type of attention you think it is!!!!!!!!
Leah has to go through a lifetime of nasty stares and comments were as you will walk through the mall not having to hear “Oh shame she’s so small” “Oh look at here big head”
Dear friend I know you will read this…. my only regret is that I trusted you and I wish I never did. I guess its true when they say,
“Your lies will catch up with you”

I wish you and your family well and I hope you don’t do this to someone else because you will never know how much you hurt me.