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?
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“
On a recent shopping trip, Leah decided it would be a fun to measure her height in the kiddies clothing department. We have been stuck on 107cm for a quite some time and she is well aware of this “no growth progress point” but really?…… she has dwarfism so we are not expecting much growth anyway.
So as we step up to the measuring chart I say “WAY TO GO LEAH you are 107cm” and Leah then responds with “This stupid achondroplasia …..Mommy how many times do I have to BEG you to get me heels? I was thinking that it was going to be a sad moment that would need some pep talk, but after a long silence she said “Mom make sure my heels are blinged up I want to wear them with my tight black pants” No pep talk needed just a little girl dreaming of her first pair of high heels😉
If there is one thing I want to do in 2015 it would be to keep this blog updated!! Yes I have been bad but hey I have a very busy 8 year old keeping me on my toes… (as well as a 17year old and a 12 year old). I would like to take this opportunity to thank all our followers, all who commented all who shared our post…. EVERYONE!! Thank you for being such a positive source of encouragement. You may be close to home or oceans apart but you are very near and dear to my heart, so lets keep on doing what we do best and keep raising awareness:) Love and Hugs Charms and Leah
By The Way… we are now on FaceBook (raising leah. raising a child with dwarfism in South Africa) go and like us !
Just had to share this with may cyber family out there!! Leah participated in the school soccer world cup. This is a annual event for the school. Each class is divided into teams, each team then competes to be the ultimate soccer team trophy holders. This year Leah was part of the girls soccer squad aged 7-8, and Leahs team was crowned the World Cup Champions (in her age group) for 2014!! All this confirming that dynamite truly does come in small packages🙂 I’m so proud of her for being such a go getter…Most of all she has the best friends in the word, they truly are a awesome little girls and we are so proud of the all the teams that participated.
On a recent visit to our local grocery store we were met with a very unpleasant incident. Leah and I were waiting on dad to finishing paying at the checkout so it was the perfect time to take a stroll down to the flower department to admire all the pretty blooms
Not to far from us stood a family busy picking out some flowers, I noticed them doing the “I’m trying not to stare look” and nudging each other while mumbling under their breath, it s what happened next that unleashed the devil in me.
The mother took out her cell phone and walked up to Leah who has by this stage wondered away from me. She then proceeded to say to her husband “I have to take a picture of this, I have never seen them at this age before”. I then stepped up to her before she could take the picture and in no polite manner told her that I would make sure I broke both her hands if she perused the matter, most of what I said was not pretty at all……
She then looked confused, as if she could not understand why I found her comments rude? She actually said “What’s your problem… I just want to show my friend what midget kids look like”
The look on Leah’s face broke my heart, she went silent not understanding what had just happened she just knew it was bad. I didn’t want to make a fuss about it in fact I didn’t mention the incident to my husband who was oblivious to what had happened… I wanted to play it down for Leah’s sake. Later that evening she asked me “If i prayed really hard do you think God would change me to look like Nicole and Simone?”. Fighting my tears I reassured her that she was absolutely perfect just the way she is, I then went on to say we should actually be praying for all the people who are out there stealing oxygen just like that lady in the grocery store, we had a good giggle and as she fell asleep in my arms, I took pleasure in realising that I am so blessed to have her in my life, she was able to brush it off with a giggle while I’m sitting here days later thinking that I should have broken that women’s face!!!
Its true we will have these bad days and encountering this woman has made me understand why some animals eat their young…
A few weeks ago we had Leah visit her ENT for her annual ear check, sadly we were informed that Leah has lost 100% hearing in her left ear this is due to the continued ear infections which is a reoccurring problem with Achondroplasia.
Leah did not show any signs of her hearing being a problem and I feel awful because this is something I should never have missed, but yet it is what it is. I’m grateful that this has not impacted her in a huge way, she is just as she always has been, she is doing well at school and communicating with all her friends, so for now things seem fine and Leah is still her usual captivating self.