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

Leap of Faith

I have had so many requests to share my testimony about my experience with Leah  , so for all those who requested I thank you for giving me the opportunity to share our story and I have tried to make it a brief as possible…

I will never forget that day in my doctor’s office, looking at the image of my baby on the screen. I felt so excited, I was so happy and at that moment nothing else mattered, then out of the silence I heard my doctor say “something is wrong we need to get you to an abnormality specialist, your baby is not developing normally”. In a split second my whole world came crashing down, I felt helpless, it was as if someone had placed a huge weight on my chest and I couldn’t breathe.

As I walked out of the examination room it felt like I was under water, all sounds were muffled and every step I took felt heavy. As I got to the car park I called my husband to break the news, I can’t remember what I told him but I will never forget how I felt, I could not believe this was happening to me, this was not part of my plans, I was supposed to be having a healthy baby, after all I never had problems with my previous pregnancies this was just not possible. By the time I got home my tears had turned to anger, I was so mad at God how could he allow me a Christian who grew up in a Godly home to be struck with this problem, God was suppose to protect me and my unborn baby! How could he do this to me?

My heart was heavy, I felt punished, I searched through the archives of my life trying to find that something I thought may have angered God, maybe it was past sin that caused this to happen. I was spiritually broken and I began to distance myself from my unborn baby, I went about the next few days ignoring the feeling of the baby moving inside me I just wanted things to end, I was afraid of what was to come I wanted things to be like they were I wanted this to be a mistake, I didn’t want to deal with a sick child. I isolated myself and I was mad at God, I felt He was not bothered with my life.

The day arrived for me to visit the foetal abnormality specialist, I remember walking down the long hallway and feeling totally disconnected from what was about to happen. The room had monitors from wall to wall and the atmosphere was cold. The doctor walked in to start the examination, there was no small talk, and I was just another patient about to find out what was “wrong” with my baby. During the scan I looked at the monitor and I remember thinking to myself that I wanted them to hurry so I could leave I didn’t want to see too much in fear of getting to attached, the doctor told me it was a girl but even this didn’t excite me I was numb inside. They kept going over and over, pushing my belly so hard I thought I was going to faint, The doctor then called me into her office and she told me that things were not looking good, I was told it could be a number of issues from Down’s Syndrome to severe Skeletal Dysplasia, I was told there was no guarantee on how this child would survive, and that I should consider the “quality of life” the child will have and how it will affect my family. Her final words were “things like this can put impossible demands on your family you should speak to your Doctor about your options”. So once again I made my way home feeling empty and alone.

I arrived home early that afternoon, no one was home and just I sat there alone in silence, I was so consumed with anger and I kept questioning myself as to why this was happening to me. I walked towards the bookshelf and pulled out a book of baby names, I threw it across the room; I was not going to name this baby. I then took my bible and in a fit of anger threw it on the floor… I was done with everything. I didn’t care what happened I just shut everything out. Later that day I had to clean the mess I created from my book tossing temper tantrum and there is was

“Luke 1; 37 For nothing is impossible with God.”

It was as if my eyes would not focus on the other words, this verse just stood out so clear and so bold. I must have read it a hundred times to get it to sink in, God spoke to me at that moment, he was saying “I have never left you please trust Me” I put my hands on my tummy and I said “Lord if this is You speaking to me, I need you more that ever, You said nothing is impossible, the doctors are feeling things are impossible, but I’m going to trust You instead of them with this one”

At my following doctors visit I was told that I could have a termination, this way we would be doing what’s best for the baby as they could not tell how bad the complications would affect her after birth, I was told having a special needs child would put enormous strain on my family and it seems fair to terminate the foetus and move on…

Things were different now, I looked at my doctor and said “I will see you in the delivery room; this foetus has a name we called her Leah and only God has the final say in her life, there will be no termination”. I will never forget the look of shock on my doctor’s face he shook his head as if to say “you are being stupid” my last words to him was “I ask for you to respect my choice, because taking a life is not may decision to make, I’m trusting God with her life, He brought us into this and He will see us through this.

Over the next few weeks I prayed that scripture in Luke over Leah’s life, and I knew that no matter what challenges we faced I needed to keep my focus on God.

On October 16 2006 Leah Kay made her grand entrance into the word, she screamed so loud I remember the nurse saying that they could not believe that loud voice was coming out of that little body. After the birth I was wheeled in isolation and Leah was placed on my chest, I overheard one of the doctors saying that they should advise our family to call our priest just in case…. I put my finger in her little hand and I prayed that scripture once again. She gripped my finger so tight and presence of God filled that room. With a burst of confidence I told the nurse to move me out of isolation and that a priest was absolutely not welcome in my room. The next morning Leah was taken for test, and during that time I kept praying that scripture over and over in my head.

The day after her birth, we were told that Leah has Achondroplasia Dwarfism; we were the parents of a “healthy” little person. If I say I was not afraid I would be lying, I was so overwhelmed, my brain was struggling to process all that was happening but I clung to that scripture and somehow it made things that were so difficult to understand seem lighter. As time moved on we have faced many challenges but with each challenge I am always brought back to that scripture, it is the foundation of my life today and when things seem gloomy, I go back to that verse and remind myself of what God has brought us through.

Leah is 8 years old now, and she is the heartbeat of our family. What she has given us is an amazing love filled “quality of life”. I often wonder how so much joy and love can fit into such a tiny body, nothing breaks her spirit she just gets up and keeps going , she has taught me so much about life ,faith and love. Sometimes we think we have it all planned and figured out then God shakes the bottle and turns your whole life upside down. Leah is the best upside down turn that could ever have happened to our family, best of all if it was not for Leah I would never have met  my cyber friends 😉  and we would never have had the opportunity to share her life with the world, we love that she can encourage others to never let go of hope! In the end we may never understand Gods ways, but His plans for our lives is perfect as the scripture says

To have faith is to be sure of the things we hope for, to be certain of the things we cannot see

Fotor leahk

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  12th 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.
logo.jpg

Mommy, Mommy, look at that DWARF…..by Fred Short

Words we have all heard, time and time again.  If we each had a dollar for every utterance, we would all be millionaires.  Yet still, today, we have problems dealing with each and every occasion.

It could be because we kid ourselves it is never going to happen again; we may even PRAY that it won’t.  Also, quite often the time gap between each incident seduces us into a mental feeling of security, of well being, of being ‘normal’.  After all, it hasn’t happened for  weeks now, so maybe I’ve grown, or maybe the world has come to accept small folks as the norm, and have no more need to verbalise their mental surprise and shock, anymore.

Ah, if only!

Sadly, it doesn’t begin in adult-hood, it doesn’t begin in childhood, and it doesn’t even begin as babies.  It begins at the foetal stage, when parents are told that maybe, maybe the child the prospective mother is carrying, is not going to grow as big as it’s peers.

“You mean, I’m carrying a DWARF?”

Every parent wants every baby to be perfect.  Every parent, prior to actually giving birth to a dwarf, has only the entertainment, circus, ridicule concept of what a dwarf is.  And here they are, about to actually give birth to one.

So in effect, the public perception of a dwarf doesn’t begin WITH the community, but with the prospective parents themselves.  Parents, who, up to this point in time, WERE the public!  But now, about to, or having given birth to, a dwarf, they are suddenly catapulted from one side of the public fence to the other.

“What are we going to tell folks?  How do we explain our child?  What will its grandparents think?”  Questions NOT really about the public’s possible reactions, but how they, the parents, are going to come to terms with having given birth to a dwarf.  The questions, initially, are merely a way they themselves, question what is about to enter their world.

And, just like a teenager with his or her first pimple, the new parents are already having nightmares about everyone staring at them.  They DREAD the first encounter.  What will the person say?  How will I feel?  What will I say?

All thoughts focussed upon their own personal reaction, and in a sense, totally divorced from their child.

The first encounter of public reaction is never experienced by the small person itself, but by parents.  It is parents who have to work out how to deal with the public reaction, which, they see, usually as being negative, alien, and quite often remarks which they consider to be focussed more on them, as parents or owners of the child, rather than at the child itself.

So, what DO new parents say? How DO they explain (if you like, justify) their new child?

Their first impulse is to come straight out with it, and say, yes, our new baby is a dwarf.  After all, what is wrong with being dwarf?  He/she is still a beautiful baby.  Our child is no different to any other really.  After all, it’s not the body that counts; it’s the person inside.  Such questions and reasoning, are really personal mental torment.

So, for starters, is there really any need, anything to be gained, from labelling that new, loved, child ANYTHING?  Why can’t a simple explanation of something along the lines of:  “Yes, she/he is small, and will not grow very tall.”  suffice?

If the observer persists, then yes, an explanation of the child’s condition, a simple explanation may be necessary.

I say ‘simple’ for two reasons.  Hopefully, a simple explanation of one sentence, should suffice.  Second, a longer explanation is given, and then the parent opens the door for perhaps even more searching, and thus, painful questions from the enquirer. The object of the exercise, is to terminate the enquiry as fast and as painless (to the parent) as possible.

Parents can divorce themselves, to a degree, by the subconscious thought that in one way, the enquiry is towards their child, and not towards them.  That is, they can respond as advocate, rather than recipient.

However, two, three years down the line, and the problem slowly and surely, becomes not only the parents, but also their child’s.  The child is old enough to hear the questions being asked about them.  Therefore the parent has double the problem. The problem of dealing with the enquirer, and also of trying to shield the child from hearing the question.

Sadly, to an extent, this is where the parent goes wrong.  It is an undeniable fact that before very long, the child is going to have to learn to deal with the public enquiry and verbal expressions of curiosity for themselves.  Surely it is better for them to learn by the parent’s example, that have to face it raw, and untrained, at some future date?

The sooner, therefore, the parents resolve for themselves, how they are going to tackle each and every occasion, the better for all concerned, especially the child, for whom this ‘apprenticeship’ is going to have to stand it in darn good stead for the rest of it’s life.

Therefore, parent and child, have to work out ways they will feel comfortable with, and they find dissolves a situation, as quickly, quietly, and above all, as mentally painless as is possible.

Basically, the confrontations (which, for many years, and perhaps the whole of their lives, is how some parents and dwarf children,  see these public verbal reactions) fall into two categories.

First, of course, is the merely curious look.  Provided it stays as nothing more than a look, then really, the best way of dealing with it, is to totally ignore it.  Easy said, granted.  Easy done, NEVER.  But, whilst the urge to react against the staring can be great, the parent or dwarf has to weigh up the difference between what will be gained by reacting to the stare, as against ignoring it.

Secondly, ‘verbal reaction’.   This can fall, again, into two main categories.  The patronising “Oh, look at that poor little child.  Is ‘it’ a dwarf?” to the downright abusive, cruel, and often not only verbal but demonstrative reaction.

The patronising can equally be dissolved with a similarly patronising response.

The more hostile has to be treated totally differently.

First of all, what seems like a hostile response can often be nothing more than a personal gut reaction from the originator.

Children are very often seen as being the cruelest in this area.  However, in my experience, a goodly percentage of Children’s reactions and verbal responses both to the dwarfs themselves or to their own parents, are really nothing more than the verbalising of quite natural thought processes and reactions towards, for them, a brand new experience.

“Mommy, why is that boy so small?”

“Mommy, mommy, look at that little man.”

Perfectly normal questions as far as the child is concerned.  He/She doesn’t know something, so asks.  He/She sees something for the first time, is amazed, etc, and so wishes to share this experience with its parents.

I taught children from the age of 5 through to eleven, for 22 years.  Over that time, professionally, I will have been in either direct, or indirect contact with thousands of children, as they make their way through the school, or with whom I came into contact when visiting different schools.

I think I can count on one hand, the number of genuinely cruel and abusive comments.  And of those, either the perpetrator’s peers, or a logical reaction from me could easily dissolve most.

The problem arises when the utterance is ignored.  Yes, I know, contrary to earlier advice.  But there are times when it is just not possible, or advisable to ignore the situation.  Quite often, this merely exacerbates the situation

Then of course, we do have the really hostile reaction.  Sadly, there is no simple answer to how it is dealt with since each and every occasion has, by the very nature of society to be both unique in it’s presentation and also by the infinite variations in human nature.

However, I have yet to meet the really aggressive situation.  That is, one by which either my humour, or ability to escape in a manner which would be praised by the late Houdini, could not dissolve.

Therefore, since I am totally different to you, (the reader), and you have a totally different personality to me, then obviously it is impossible to state hard and fast rules or remedies for each and every one of the many thousands of situations which will arise during your lifetime, or that of your child.

Part of the success in dealing with the public, is always to remember, that to them, seeing you (or your child) is a unique experience.

After all, that is the basis of their reaction.

However, to you, it is, or will become, a day to day situation.  Therefore, remember, you know what is happening, they don’t.  Knowledge is power, and power gives control.  Control of the situation, is your ultimate goal.

At best, like myself, you can build up, from experience, a catalogue of generalised methods one will adopt to cover the majority of situations.  You can mix and match to meet variations.  You can ‘play it by ear’ any new situations which arise.  However, I think the best, and most successful solution is to accept that yes, today, tomorrow, the next minute, someone, somewhere, is going to be the next Jo Public to be dealt with.  You know this for a fact, you know from past experience, pretty much what is about to happen, so be ready, (armed, if you like) to meet and deal with the next “Why are you so little?” situation

Finally, you’re own personal feelings.  Yes, they hurt, they hurt bad.  There will never ever come a time when the pain goes away.  However, the very last thing you must do, is show that pain, that hurt, that insult, in your facial expressions, your voice, or your reaction.  Because that in itself, can exacerbate the situation out of control.  Be in control of the situation, through the control of your own feelings and emotions.

As for educating the general public, I do not have much faith in the orchestrated method. That is, as some parents do, give talks to their child’s school, add books to the schools library, or even show video’s.  To me, it is tantamount to the head of the school standing up in assembly with a megaphone and a spotlight trained upon your child and announcing something to the effect, “Children and Teachers, we have today, for your education and delight, a dwarf child amongst us.  You are now about to learn the inner most biological and physiological details of your new peer and pupil.”

If I was that child at the focus of attention, I would cringe!  I would cower, and I would pray the earth below my feet opened up and swallowed me.  The last thing, any child wants, is to be the focus of attention!

After all, isn’t the whole of this discussion to do with being accepted as ‘the norm’?  Of being treated as an equal?  Of being allowed to be just another member of society, or a peer within any given group?

So, the individual himself, or herself, is the best advocate, the best advertisement, and the best font of knowledge on his or her dwarfism.  How he or she goes through life, how they choose to educate the public, and deal with each and every situation, is going to not only have an immediate effect upon themselves, but also a futuristic effect on the next confrontation and the next generation of dwarfs which Jo Public meets.

At the end of the day, dwarfs have to be able to stand tall!  They have to have a pride in themselves, the courage of their convictions.

Only then, will they be equipped and suited to take their place in society and make a very positive contribution to themselves and their community.

By Mr Fred Short.