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?

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“

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

When will I be “BIG”

Leah has become aware of the fact that she looks different, I often here her say I want new arms or why can’t I reach but she can, it’s difficult for me because I often find myself saying “Leah you are Special” and I know from the look on her face that the “Your Special” thing is  becoming a bit monotonous  . People tend to assume that she does not really understand her condition because she is only 4 years old, but I know this is not true and she is becoming increasingly aware of her difference.

I guess I knew this time would come and I am fully aware that this is only the beginning , when she meets other kids she will always ask “How old are you”  and low and behold if they say that they are 4 years old she asks “Why are you so big ( tall)”  The worst for her (and me) is when she tells other kids that she is 4 years old they run off and say  “No way you’re still a baby” this gets her into a rage of astronomical proportions and it usually turns into a screaming  situation of  “ IM NOT A BABY STUPID!!!”  Or this one “OH FOR GOODNESS SAKE IM NOT A BABY YOU RUDE IDIOT” and that thanks to the vocabulary building skills of Leah’s older sister.

The worst of me is to see the utter frustration of this perfectly capable 4 year old trying to explain that she is just small and she can play just as well if not better than the other kids. Recently she asked her dad “when will I be big (pointing to the sky)” and all dad could do was pick her up and say one day you will be grown up …just not “big” and to our surprise she said “No I want to be big” as she was not interested in the maturity aspect of growing up she wanted to know about her height.

I really thought that I would be prepared and ready to answer any questions, but I don’t know if I am. I feel so sad when kids call her a baby, I feel sad because I see how angry this makes her. But on the upside once they give her a chance, they realise that she is just short and all is forgotten. But what gets to me the most is that it seems she  may have to prove her worth in every new situation, and it’s so unfair that a simple difference warrants you to the test of worthiness before acceptance.

It’s sad that even in the world of children for some, the bad habits of ignorance is instilled, and it seems it’s the BIG people who don’t seem the weed out this prejudgment of difference.  If you took the time to teach your child about not seeing disabilities as an obstacle imagine the difference it would make, after all we are our children’s greatest teacher and most of what they know comes from you.

What have we been up to?

 Hi all, can you believe that its that time of year again, I know we say this every year but wow. …Time sure does fly by its almost Christmas, if I have been quiet on the blog duties I do apologize my computer broke and unfortunately I am unable to replace it right now so I have been doing some computer hopping to check on my LP facebook peeps and to update the blog LOL

 This has been one busy year for our family and im sure for many others. We have faced some really stressful situations and had to make some hard decisions, it seemed as if everything we touched failed, but through it all Gods grace and love has been amazing, our family is stronger than ever and what could have been a nasty situation somehow has brought us together and we face our trials as a team. What we find is that in all trials and storms we praise God because we know that he is true to his word after all we still have each other and when one is down, the other is there to lift you up.

So how do we know this about Gods faithfulness…? We look at Leah, she is a living testimony of Gods grace and faithfulness, before she took her first breath she was not given a good prognosis, I was told to consider my options on termination as there was no guarantees as to what her “quality of life” would be. When she was born she was placed on my chest and we were wheeled into a isolation room as I lay with her tiny naked body on my chest I could hear her struggle for each breath of air to fill her tiny lungs they just left us there alone, I held her tight and with tears in my I eyes I said “Lord you gave her to me and you are the God of the impossible, It is written that you can do the impossible and you know the plans you have for Leah’s life” needless to say Leah is 4 years old today she is a absolute joy and we look at her to remind us that no matter how dark and gloomy some problems may seem God is faithful and He knows the plans he has for your life.

I’m not sure why I decided to share this with you today maybe I am meant to encourage you somehow, so if you feeling like all hope is lost just remember         

Luke 1:37 says

 “For with God nothing shall be impossible”

This picture was taken recently and when I asked Leah what she was thinking she said “Jesus loves me more that all this water” sometimes we as adults can learn so much form our children……..

Feel it…it is here……..

How exciting………………………………….

It is a really exciting time for South Africa in fact it is history in the making, we are currently hosting the World Cup Soccer and the atmosphere is simply electrifying, It almost seems as if South Africans have set their differences aside and united as one nation to welcome the world to our beautiful country. This is something we will remember for the rest of our lives and I’m thankful that we as a family are able to be part of this amazing time for South Africa.

So as you can expect there is loads of exciting thing happing in our country …but at the same time there is loads of exciting things happing for “Dwarfism Awareness South Africa” and “Raising Leah” as well. When I started this blog it was a way for me to express my feelings and to let others know that our family is just like any other family out there, and having a child with a “physical difference” is in no way a curse or something to be ashamed of, we opened our home to the world to show others that, love and determination can overcome any obstacle that is set on your path, all you have to do is fight for what you believe in.

Because of the blog we have had articles printed in 4 leading South African parenting magazines, 1 community newspaper which is distributed across the whole of Cape Town. I am currently challenging the South African Human Right Commission over the use of derogatory terminology (M word) being used on live radio broadcast as I have found that this violates the law of discrimination against people with disabilities and we have just finished an awareness article for another leading child parenting magazine scheduled to go to print in August.

Now for the big news… we might soon go national with Leah and some other LP friends as we are being filmed for a leading investigations and medical research television program. The aim of the documentary is to break the negativity surrounding little people living in South Africa and Leah and the blog will be one of the families featured in this documentary. So needless to say I am floating on a cloud because it seems like all that I believe and fight for is becoming a reality. So keep your fingers crossed and let’s hope the pitch goes well

When Leah was born I vowed I would fight for her equality, and I would raise her to know that she can achieve anything in life. Recently someone called me a Dwarfism awareness activist, so maybe I am but at the end of the day its all for Leah, and our family would not have it any other way, Leah has taught us that if you believe and fight for it, you can achieve it …all it takes is DETERMINATION.

Living a life much bigger than normal

I know that the chance of “them” reading this blog is slim because some people in the world today have a attitude of : “ If im not affected by it I wont bother to know more about it”

The “Them” that I am referring to are the few ignorant individuals that roam among us… what saddens me the most is they not just “anybody”… they are parents just like you and me so let me explain. On a recent outing Leah got really excited when she saw a little girl sitting in the shopping cart close by. Leah said hello and waved asked her name and the little girl responded and smiled and chatted just like two toddlers would do… completely innocent not having a care in the world. The little girls mom was not aware of the two little ones chatting as she was too busy picking fruit out of the basket. As I moved my shopping cart to pass the little girl, Leah stretched out her hand to touch  her hand, her mother who happened to be done fruit picking at this point realized what  Leah was doing and darted across the floor to get between her child and Leah, she pushed her little girls hand out the way and said  “Don’t touch her cant you see there is something wrong with her!!”  And she walked off.

My heart broke and I was left speechless, needless to say I left what I was doing and walked out the shop, as my eyes welled up with tears . I held Leah in my arms and she put her arms around me and said don’t cry mommy, she had no understanding of what had happened and  I felt a sense of relief  because she didn’t have to fell the hurt I was feeling.After I regained my composure I became really angry because I realize how ignorant this mother was, she without knowing is teaching her child to be just as ignorant as she is.

I’m sure lots of LP moms have been in my shoes and has been left utterly heartbroken, don’t people realize how hurtful their actions can be?? Are they so selfish that they have lost all sense of self-awareness?? How can they demand respect from the world if they dish out disrespect to others?? How can you whip out your cell phone camera and say “Oh my can a take a picture of her we have never seen a baby midget ITS so cute”

I guess there will always be ignorant people in the world but at the same time I am grateful to the genuine people who go out of their way to acknowledge Leah when she says hello…. The few who smile and blow kisses the few who say do you mind if I give her a hug, the few who say Leah that’s a beautiful name……..  God has a plan of that im sure, Leah is my testimony… because when the world had no hope for her God knew better and I’m sure one day she will rise above all these hurtful moments to become a little lady living a life much bigger than normal.

Sunshine ……

We went through all our unmarked disks and came across this video, I posted it on YouTube about 6 months after Leah’s birth, after that I started the blog, I was so emotional while watching it the tears just flowed …. I felt so silly because I realized that my little sunshine was not so little anymore…. guess its true what they say time waits for no man.

Strength in numbers

It’s November!!!!!!! I’m a little shocked as to how fast this year has flown by. I often find myself asking, “so what have you accomplished” because it seems as if time just wasn’t enough to do all the things I had planned!!!!!

At the moment I am fully focused on getting little people of South Africa off the ground. We would love to have more LP Families join our group but in South Africa it’s hard to break the stigma of embracement and self blame. People tend to get stuck in a phase of isolation. They shy away and they feel content living in the “ignorance is bliss” world, I know why they do this it boils down to one thing “FEAR” and I understand how they feel because like them I was griped with fear. It’s hard dealing with things that you can’t control or change. It’s even harder when it’s your child. I guess isolation is like nature’s way of creating a sense of protection.

My breakthrough came when Leah was about 3 months old, I realized that I have been consuming my life with my own grief and no mater how much I wanted to protect her, I wasn’t doing her any good by not knowing what Achondroplasia was all about. In order for me to make informed decisions about her health and well-being I needed to educate myself because knowledge is power. I had to accept that Leah is a Dwarf and it’s something I can’t change.

Today we don’t see the condition we see LEAH KAY (who has become quite a handful over the past few weeks LOL). One day she is going to go out there and take on the world just like everybody else, and I know she is going to be just fine.

Because there were no support groups for Dwarfism in South Africa at that time the Internet became my recourse center. I fortunately met the right people who helped me by sharing the right information, because as you know there is some scary information floating out in cyber space. I feel that support is of vital importance as we can learn so much from each other. I would love to see families rise above their situation and instill a sense of confidence and independence in their children. I don’t want them to feel alone because you are most certainly not alone. It’s important for your child knows that they are not alone and that there are other kids just like them. I believe your child can achieve anything they set their mind to with your support, motivation and willpower.

So I’m gonna lay it out for you. Is this your own fears that you are struggling with? And if it is your fear… can you truly encourage your LP child to believe he or she has the ability to make his dreams become a reality. Our kids are what is important right now so let’s make this group work. Let’s grow “Dwarfism Awareness” in South Africa. There is strength in numbers.

I am Leah Kay

Perfect Awareness

Being the mother of a special needs child has to be one of the most challenging things to deal with in life. I remember when I was a little girl, I dreamt about my perfect wedding, the perfect house my perfect children. I’m sure that this is the dream of most little girls.

Well… things don’t always seem to work out the way you want them to. I was 20 years old and unmarried when I had Simone, I met Ashley and we fell in love and got married when I was 4 months pregnant with Nicole!!!!! (Sorry mom. Ha ha)we nevr had a honeymoon let alone a family vacation!!!!!!!!!!!! Ashley and I thought we were done with being “new parents” along came Leah, and we were given the news that she has Achondroplasia. After all this and lots of soul searching and tears I realize I can proudly say I have no regrets about the way things has turned out, this was and is the plan set out for my life and my children came into my life with perfect timing each of them giving me a valuable lessons in life and love. I know in my heart that Leah was sent to my family with a specific cause. She has taught us the meaning of unconditional love, support and acceptance. So on the whole my life could not be more PERFECT, and if I had to live it all over again I would not change a thing. (Okay one thing …….. maybe I would be a bit thinner!!!!!!!!!!!)

Leah’s Achobdroplasia has made us more aware of the day to day issues people with disabilities have to deal with, it has also made me realize what parents of special needs children go through on an emotional level. After Leah’s birth I was pretty much left in the dark I did have a chat with a genetic counselor but was informed of all the things that “can go wrong” with kids that have Dwarfism and this left me utterly traumatized, fortunately I met Tonya from “What is Normal” now “Knoahs Ark” and from there I was introduces to all the other Little People Blog moms and dads, it is there were I found my priceless support and information. One year after Leah’s birth I plucked up enough courage to start “Raising Leah” with the goal of raising dwarfism awareness in South Africa and to let new moms and dad see that life can be very normal even if your child has a special need.

I have met the most amazing people over the past 2 years; we have been there for each other through happy and sad times. I have learned to appreciate life on a different level and to take one day at a time. I know that the future holds many challenges and as Leah gains more understanding there are going to be difficult questions ahead, but If I dwell on the future im going to consume so much energy trying to plan for something that might turn out to be totally different to what I am expecting…. So I say to heck with that, we will deal with those issues as they arrive and for now im going to enjoy my girls while they are still mine to enjoy, pretty soon they will be all grown up and they wont need mom and dad as much as they do now.

So my mission for now is to raise awareness about Dwarfism especially in South Africa, besides our blog, Leah’s story has been featured in 4 leading magazines with the hope to inspire and make people aware of what dwarfism is and the challenges individuals face living with this condition. I would like people to realize that little people have as much right to a “normal” life as any other average height person. I have to admit that I do get annoyed with parents who decide to enroll their achon kids in special school because they believe that their child will be subjected to teasing in a mainstream school situation. You as a parent need to take a stand and raise the issue with the teachers and students and the parents of the school even if it means addressing your grievances in a meeting with the whole school. The public needs to be made aware and its not going to help your child cope in the real world if you shy away from society, after all your child learns from you, and if you the parent believes in your child they will definitely start to believe in themselves and they will know that they can achieve anything possible in life.