I thought  would post these two pictures of Leah, she has such an amazing sense of humour in these pictures Leah will demonstrate her extraordinary ability to go from

Super Model pout to..

I’m locked up in prison please help me sadness look  hahahah just had to share them:)

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

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.

 
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. 
 

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.