Look what I found while playing around on the net… Warwick Davis (Harry Potter Fame Prof. Flitwick) is busy with a new movie called Shoartfellas
Here is a sneak peek
Look what I found while playing around on the net… Warwick Davis (Harry Potter Fame Prof. Flitwick) is busy with a new movie called Shoartfellas
Here is a sneak peek
We have not had a very good week…….
I had a very bad case of laryngitis and have been voiceless for four days, this morning was the first time since Monday I managed to make some sound. Leah is also not well she has a bad case of flu which has blocked her nose and because of that her ears are infected, she screams of pain and to top things off her breathing patterns have changed…. she has moment were she just stops breathing for a few moments when she is asleep… and those few moments just send me into a panic!!!!
So its been a bit rough in the Kay household, and I will be seeing the pediatrician on Tuesday about the breathing.
Sunday I got a call from Carmen (my sister-in-law) asking us to come around for a visit, and to meet their new family member???
So off we go to auntly Carmen’s house and it seems that Easter brought more than just family together …..it also brought a little puppy, her mum had kicked her out of the litter, and in her weak state she found her way to Carmen’s home , they took her in and with a bit of nursing she is doing great. Kyle (my nephew) decided to name her Cola, so Nicole and Simone asked me to take some pictures and introduce Cola to everyone……… So here is our newest family member named Cola…..
Leah just loved playing with little Cola..
Leah and her two aunties….
We are sure that Cola is going to love her new home and all her new friends.
Last month a leading South African baby magazine wrote a story about Leah, I was hoping to meet some South African parents of little people but unfortunately I did not, but I had so many calls from people who were touched by her story and I even have people who are still calling me today just to hear how we are doing.
This week I recived a e-mail from a young man named Henry who is 23 years old and lives in South Africa in Witbank. He is classed as a diastrophic dwarf.He sent me his story and It changed my life………. I called him today to ask him if I could share it with you and he said yes…… all I can say is God is AWSOM and Im so happy he sent Henry to me so that I can share his life with you……….
(Small tree, Big character)
This is the story of me…
Born in Witbank, Mpumalanga, South Africa on the 31st December 1984. The summer morning, 8:00AM, after some sonar’s, a surety from doctors, that everything is fine ran through my parents minds. After all this was the doctors’ diagnosis of what is going on, so nothing to worry about…?
This day started a turn in lifestyle for my parents. My dad was standing outside awaiting the delivery of his son. The calm and quiet atmosphere turned in an instant to a scattering of nurses running up and down. No-one wanted to talk to my dad. My dad got the attention of one of the nurses and asked her what was going on. The nurse shared with my dad that his son wasn’t normal, not even close and that dads usually do not accept a deformed child or even the thought of this.
The doctor came to my dad and told him that I was badly deformed, that I am a dwarf and had Hydrocephalus (Water on the brain) and breathing problems and that babies with this abnormalities usually do not live longer than 3 hours.
My dad said that my eyes were so far apart, that if he put his hand on my face, that he could fit his hand in between them. My dad turned around and asked the doctor who he thinks he is? He added only God decides on life and death.
My mother had to lay on her back for a day, because she had an epidural and cesarean. The first time my dad saw me, he said to me, that he will always be there for me no matter what happens. He held his hand out to me and I took his fingers with my small hands… This was where our friendship and relationship started. Approximately 3 hours went past and the doctor told my dad that he decided to send me to the Pretoria Moederbond.
Dr Nortje saw me. I was born with club-feet as they call it.
The very first thing he decided was to put my feet in casts. My feet were so badly deformed that if they held me straight up, the bottom of my feet were facing upwards. From here my I was sent to the H.F.Verwoerd hospital at about 11 o’clock.
My mother still had to lay there until the next morning. The following morning they drove to Pretoria, where upon arrival the nurses informed them that when a baby is sent to them they usually phone the funeral home, because they do not survive the trip. They also informed my parents that they never cleaned out the fluids out of my lungs, because they did not think I am going to survive.
My parents came to see me as I was lying in the incubator. The most friendly baby you could ever see with his deformed face and eyes that were so far apart, they said. My dad stuck his hand inside the incubator and held me. My little arms was shaking like a new born penguin that wants to fly (This was where my first nickname came from – Pikkewyn). [English translation “penguin” ]
They turned around and saw 3 doctors standing behind them. They shared with my parents that they examined me very thoroughly and that they had cleaned out my lungs to give me a better chance. The bad news they gave them was that they classed me as a Diastrophic Dwarf (Dwarf with multiple problems) and that there were only 2 living in South Africa at that time. Me and another in Cape Town. And only 11 in the world recorded at that stage.
The worst news they could give my parents was that I was born with a deformed collar bone and that babies born with this deformity usually do not live long and they shouldn’t have a life expectancy of more than 3 months.
My dad had a long discussion with the doctors and also mentioned to them that God is the only one that decides between life and death. After they saw my dad’s faith and that he believes that God is in control of things their attitudes changed completely. The doctors went out of their way to gather information about my condition.
The first doctor that worked on me was Dr de Jong. A guy that stood with us until today, one of the best people we know. He took his own time to gather information about this condition. Dr de Jong made an appointment with a neurologist at the Eugene Marais hospital. The specialist did a very thorough exam on me and very sarcastically mentioned to my parents that according to all the tests he has done, that I am more intelligent than most people. With time my eyes slowly moved into position and my head became smaller.
From here on the big work and prayers started. After some time I was sent back to the H.F.Verwoerd hospital where Dr de Jong started to manipulate my feet. For the first few weeks my mother had to travel from Witbank to Pretoria and back. After this they decided to operate on my feet.
The first time they operated on me it nearly broke my parents, but God helped them through this. They physically cut my bones in my feet and placed it in an angled position and connected it with wires. The physio-therapist in the hospital did not want to work with me so my mom had to be taught how to do the therapy herself. I had to undergo about 7 foot operations and every time my feet had to be put in casts.
My parents took every leave they had, sometimes 27 days at a time, sitting at my bedside in the hospital. My mother had to spend some nights sleeping in a baby cot next to me. Seven years of my parent’s life this went on. The nurses were too scared to work on me, so my parents had to look after me in the hospital. The travelling it took from doctors and back was over 100 000km.
All the operations did not go so well and sometimes my parents had to take me back to have the casts removed and refitted. Then they decided to work on my hands. I was born without knuckles in my fingers. They took bone that they cut out of my feet and planted it into my fingers. Now both feet and both hands were in casts. Over this period my dad also had a motorcycle accident and broke his knee.
I never crawled, I always sailed in my backside or belly to get around. To everyone’s surprise I gave my first steps at 1 year old with my foot casts. No-one knew I would be able to walk at that age. My first shoes had to be imported to help with the forming of my feet. These shoes lasted for about 3 to 6 months. After this my shoes were made by the orthopedic division at the H.F.Verwoerd hospital. Imported shoes were about a quarter of the cost of the locally made shoes, but we couldn’t import anymore because it did not fit right.
I was taken for a check up on my sinuses. Something else was also wrong because when I cried there was an abnormal sound coming out. My parents took me to a throat specialist. The doctor said that a Diastrophic dwarf symptom is that the Uvula is usually split from top to bottom and that this affects speech. The specialist shined a light through my throat and found that this was the case with me as well.
They decided that an operation had to be done to rectify the problem. The doctor gave my parents a date for the operation and also mentioned to my parents that he will have to make a hole in my throat to insert a tube through which I will have to be fed. On that same date my mother had an appointment to get glands removed from her face and arms.
The day arrived for the operation to be done. 4:00AM the morning we left from Witbank to Pretoria. Just as we passed Balmoral a voice spoke to my dad and said to him that no operation would be necessary on me. As they passed Bronkhorstspruit he just mentioned it to my mother. They took me to the hospital. They gave me pre-med and pushed me into the operating theater.
My dad took my mom to her hospital where they would do the procedures to remove the glands from her arms and face. My dad went back to my hospital and spoke to a nurse there. She told my dad that it would take approximately 3 hours for my throat operation.
He went back to pick my mother up. My mother was still under the influence of the anaesthetic, because they have removed about 17 glands. She was all covered in bandages. (My mommy, a mummy!). To their luck there was a traffic officer giving my dad a ticket because his front tier was touching the pavement.
They drove back to the hospital where I was and as they walked in they saw me standing in my cot. My dad asked the nurse what was going on. The nurse said that the doctor is on his way and that he will explain what happened. They walked towards my cot and with a surprise saw that there was no hole in my throat, no scars, no stitches and that I was full of life.
The doctor came to them and the first words he said to my parents were that a miracle has happened. He shared that as he started to examine the area to work on he found out that my Uvula was healed. His exact words were that it looked like somebody stitched it up with the most precision stitching that’s known to man and that this can only be miracle. My dad mentioned to him what he experienced on the way to the hospital and what he have heard and the doctor again repeated to them that miracles do happen.
At this stage everything went far beyond expectation. Everyone was proven wrong about my life expectancy.
The next shock came to my parent’s attention. After a check up and a few x-rays they found that my back was collapsing in a Z form and that they had to do an emergency back operation to fuse my whole back. The first operation took about 8 hours where they tried to fuse my back from the back.
My whole body was put in a cast up to my neck plus one of my legs with a small hole at my stomach, because the stomach usually swells up after an operation.
One morning my parents woke up to find that my ears were swollen twice the size of what it used to be. They took me to a doctor who just put pressure on my ears with bandages. After that they decided to drain the fluids from the ears which was the worst thing they could do because this deform the ears. They call it cabbage ears and this is also a Diastrophic Dwarf symptom.
A second back operation had to be done because the first one was unsuccessful. My back kept on bending into the Z form. This they had to stop because the back was pressing against my heart and lungs which suffocated me. The doctors even got doctors from overseas to have a look at the situation and to ask their opinion. They said that the problem had to be rectified otherwise at the rate it was closing it would suffocate me before I would reach the age of twelve.
It was decided to do a second operation from the back. Basically everything that could go wrong went wrong. My dad is always saying that this was where he got 95% of his grey hairs from. My face swollen up, my stomach swollen up, the cast had to be taken off and a new one had to be put on.
A check up had to be done on my back every year. For some reason my parents did not take me for one of the check-ups. They only took me about 9 months later. With this check up they found out that the operation was not a success and the doctor mentioned to us that it was actually a good thing that the check up was post-poned. My back has formed a cavity where my heart fitted in.
They decided to do a third operation where they would do the operation from the front, removing my heart and lungs and cutting my rib out to plant it into the back to make the possibility of rejection smaller. They cut the rib out and left 10 millimetres on each side so that the rib can grow back again. The doctor that did the first 2 operations mentioned to us that he did not want to do it for the risk was too big.
Several doctors told my parents the same thing. Doctors overseas mentioned to them that one of the highest qualified doctors on back operations was Dr Louw and that they will make an appointment with him to find out if he would do the operation. We went to see Dr Louw and he mentioned to my parents how risky this is but if it was not done I would surely suffocate within the next few years. He also mentioned that he would have to get a heart specialist to look after my heart and lungs after removing it from the body to monitor it while he is doing the implant of the rib into the back from the front.
This was the only way to stop the back from closing up onto the heart and lungs. A date was set. We left for Pretoria. Pastor Jacques Goosen met us at the hospital and after he did the prayers I was taken to the operating theater.
My parents were so confident even though it was a very high risk operation for God doesn’t go back on his word. After a long time (about 6 hours) the doctor came out of the operating room and told my parents that everything went well, but he also wanted to mention to them that the woman specialist that had to look after the heart and the lungs said she couldn’t do it any longer and he have to finish because she could not take it anymore.
He said that he told her that this is a matter of life and death and that she would just have to continue. My dad thanked the doctor and he turned around and said to him that we must thank God and not him. He only did the job.
I was pushed into the i.c.u.
After about an hour they saw the nurses running up and down looking for the doctor and they knew there was something wrong. What happened was that the nurse never checked the rate at which the blood was flowing into my body and that a unit of blood was pumped into me in a period of about 20 minutes. This can also be fatal. The situation was so bad that my whole face moved off my skull because of the swelling, my whole face was lying next to my skull on my pillow like a piece of rag.
The problem with blood and drip flowing in too quickly causes the lungs to fill up with moisture that can drown you. They couldn’t give anesthetic and holes had to be punched into my sides and straight into my lung cavities to drain the water. This was done by pushing a thick needle (more than 10 millimeters thick) into the cavity from the outside. Into this needle a pipe had to be inserted. This all had to be done while I was awake without anesthetic. My mother had to assist. This is the worst thing you can ever do to a parent…
From there on things went better and I regained my strength. Again God was faithful. 7 days after the first op another full fusion had to be performed from the back.
After this, year after year, the check-ups showed that the operations were successful. At the age of 14 a second hand operation was done on me to reset my fingers for better grip. I also had an operation done on my feet to angle it further for more comfort. After this my dad said that I would have to make my own decisions about operations, because he is too old and I am old enough to make this decision for myself.
However my story doesn’t end here.
At the age of eleven I went with my best friend from primary school to a karate class to watch as they practiced. This caught my attention and I was interested to try it. Shihan Ben Gouws took me and gave me a chance. 8 years later I graduated to my 1st senior black belt. I also went on for another 2 years and got my 2nd senior black belt.
This was one of my goals in life. I was taught and always believed that if a person starts something in life you finish it, with the best of your abilities. My goal was to show that even with a disability you can reach your goals in life.
At young age I learned to swim on my own which in itself was an achievement. I sang in the primary school choir, and made it to my level 2 in piano. I still play in my spare time. One of my greatest goals was to be able to drive a vehicle. Thank God, today I drive my own car, giving me the ability to reach more and more people.
I went through primary and high school like any other normal kid. I passed my grade 12 and am currently studying Auditing Science at Unisa. I’m a trainee accountant at a well established Accounting firm in Witbank.
God has given me the opportunities to experience a lot and to prove to myself and others that everything is possible through perseverance, giving your best, prayer and most of all faith.
This is where my mission starts. Giving God thanks for what He has done and given to me. God has confirmed my ministry to me through people, through scripture, with dreams and with revelations. It’s my turn to give back.
The doctors also told me that for them it seems that no operations further needs to be done. It will be my choice to have another operation done when I feel like it. My opinion is that what I feel doesn’t matter. God is the one making decisions in my life from now on.
God healed me and gave me:
Hands – So I could touch, heal and bless
Feet – To go out for Him
Voice – To praise, worship and spread the Gospel
A Backbone – To stand up for Him
So who am I to waste it…?
To hear my testimony, God’s work and message at your church, youth meetings, group meetings etc. Please contact me on:
Cell: 083 345 9325
For a REASON
For a SEASON
For a LIFETIME
I wrote this book as a mission to give all glory and praises to God for what He has done for me, and what He is going to do in other people’s lives. This is my mission, to show people that no matter what the circumstances, if God has a plan for someone He WILL carry you through it, no matter what. God has a plan for us all, He knew us before we were born, and He called us into a destiny some of us have not yet seen.
Oh! The glorious feeling just to think what would happen if we knew what He has in store for us in the future, in our destiny. This is where we need to make that choice, are we going to accept God have something bigger for us, bigger than what man’s wisdom can understand, take it to heart, and get on that plane, or are we going to go on with our lives and somewhere along our journey find out that we missed the plane.
One thing we must realize, that if we do get on this plane, it’s not going to be easy, but it’s NOT impossible. At least we know then who the pilot will be and would have our trust put in Him to take us through the storms.
Thank you for reading this book. I trust that God will open your mind and show you where you are and where you need to go. The shortest distance between two points is a straight line, but the safest way to get there is on a solid path.
After a difficult birth induction, which made no progress my doctor decided it was best to deliver Leah by cesarean section.By that stage I did not really care how they got her out….. all I wanted was for them to get her out as soon as they could. I remember how weak I was when they handed her to me, I could hardly hold her and believe it or not I was so exhausted, I was actually dozing off through all the excitement (the drowsiness was partly drug related in sure).
Just before I was wheeled into the recovery room, I remember a rather excited nurse saying that they are going to have me Kangaroo Leah for a few hours, next thing I knew I was topless and a tiny naked little body was strategically placed between the “boobs”. Needless to say Leah snuggled in like a new born puppy and it must have been so comfy for her that she decided to seal our relationship by having her first “wee” on her mommy, thats when the nurse realized she had forgotten the diaper!!!
My stay in hospital was four days, and my “few hours” of Kangarooing turned into four days of kangarooing, now im not complaining, but I think it has something to do with the little problem we are having with a certain little Kangaroo named Leah. With my previous two baby’s, they were placed into the little crib next to my bed, they were handed to me at feeding time and when I got home from hospital we sort of had the same routine going, they were quite happy to sleep in their cribs, and be by dad or whoever there was that wanted to lend a helping hand, but when I got home with Leah, she stuck to me like glue, not even Dad could meet her needs, and the crib was a big NO NO. She would only fall asleep with me, and today she only falls asleep with me, and guess what even though she cannot fit between the boobs anymore, she sticks her hand between them. The longest sleep we have in the crib is about 3 hours after that, momma kangaroo and poppa kangaroo share their bed with baby kangaroo!!!! and even though this is not a full sized kangaroo, she sure knows how to fill a space.
So I ask myself, in the real kangaroo world the “joey” leaves the pouch after about 18 months, Leah is now 15 months so that means I only have 3 more months to go!!! Oh who am I kidding …………… I think this Kangaroo is here to stay.
I thought I would join in the fun and share one of the reasons why I love being a mom……
A few days ago we decided to take the kids to Boulders beach , now boulders beach is the one of the few beaches were visitors share the beach with Penguins, now these little creatures are so tame around us humans , …….. they plonk themselves down next to your food basket or as I encounters with great shock, they sometimes swim through your legs while you are standing in the water.
But getting back to the reason for this post….. I love being a mom because my kids and im sure all kids just say the most amazingly funny things and whats even more funny is that they know just when to say it!!!
In order to get some calm behaver out of Nicole I say….” Nicole just remember to behave yourself because Penguins only like good little girls” after a long pause I get my answer ” Mom I think penguins only like fish, their kids seem to be just as busy as I am” ………………..
I thought I would share some more ” Kiddie Quotes” with you…
The Way Children See Things!
Yesterday, while enjoying a warm summer evening with the girls I could not help but notice that Leah is growing up and loving the fact that she can walk around and be where she wants to be……….. I could not help but feel a little sad….. my baby has become a toddler.
On the path to becoming a little girl ….
My daughter Simone usually gets a magazine at her school called ” Cape Town’s Child”. in this particular book they have a section dedicated to letters, so moms and dads can share stories and all sorts of information with one another. My eye caught a letter called ” Sharing advice” and it was almost as good as the feeling I had when I heard Knoah and Tonyas voices the other night.
A mom of a seven year old girl named Alex who has Diastrophic Dysplasia ( very rare form of dwarfism) was looking for a support group or just to meet people who might have more information about Dwarfism. In her letter she said that as far as she knew Alex was the only child in the whole of South Africa with this type of dwarfism, she also said thet Alex is the light of thier lives and has taught them so much.
I was so excited and I e-mailed her just before I did this post , so please everyone lets hold thumbs and hope she reply’s I would love to meet her and Alex and I think she would love our little family!!!!
This question “What is it like being a special needs mom” was asked over at “What is Normal” at the time I could not find the words to answer that particular question to the best of my ability, but God must have really wanted me to answer it because today, I was asked the very same question again!! So that is the inspiration for todays post.
Were do I begin, lets start with the truth, Its not easy, If I think back to some of the many emotions I felt from the time Leah was born they start at FEAR, JOY, ANGER, DENIAL, ACCEPTANCE and finally realizing that this little life is totally dependent on you, and its up to you to gear yourself with as much information and support to carry you through each day. So I had to realize that I had to take things one day at a time.
If there is one thing I know for sure God makes no mistakes, I know Leah was given to us for a reason, before I found out I was pregnant my husband and I were living life past each other, he would be doing his thing and I would be doing mine, my girls were at a age were they were also doing their thing and our idea of quality time was taking the kids to restaurants for Sunday lunch, or visiting friend while all the kids played in the back yard, we thought our lives were complete and we had everything we needed. When we found out at my 20 week scan that there was a problem with Leah, my first thought was why was this happen to me?Is it because I never spent enough time concentration on my spiritual life, did I do something wrong? Why was I being punished?!!!!! I cried for days, I was inconsolable and I mentally tried to detach myself from the baby that was growing inside me.
The turning point for me was my Fetal Abnormality Scan, instead of a little black figure squirming around on the screen, I saw Leah in 3D, I will never forget her face and seeing the blood pumping through her veins, seeing her heart beating so hard its as if she was running a race, I then realized the magnitude of this little human being growing inside me, I felt guilty for not wanting to feel anything for her, I realized all she had in order to survive was me. As I left the hospital I remember putting my hand on my tummy and sobbing as I asked God to forgive me for those thoughts of not wanting my child, I was a new mommy after that appointment, I realized that we were all in this together, we needed to unite as a family and I accepted my child and loved my child no matter what was to come our way.
It hasn’t been easy, it’s challenging because you faced with so many obstacles, in Leah’s case we were not informed of all the health issues that surround Achondroplasia, but we will face those challenges, and we will work through them.
I would not change a thing about my life today and neither would the rest of my family, I am constantly amazed at how this little person has brought our family together, we now see life through different eyes and sometimes my husband reminds me of how we THOUGHT we were complete, little did we know that Leah was the missing piece of our puzzle. We have lost some of our old friends, but we have gained a new family, we have met the most amazing people and we have shared in their pain, we shed tears for baby Theo and Little Avery, we felt as if they were part of us, and we prayed together when Knoah was ill and we speak of these people as if we have known them for a lifetime, we make a point of trying to visit all our little friends blogs just to keep up-to-date with the progress everyone is making, and its a good feeling to see how all these families have embraced life and deal with all sorts of issues and still remain positive and happy while doing so.
There will be fears, and there will be tears but I would not have it any other way, for me being a “special needs mom” has made me more tolerant, taught me the meaning of patients, grown my relationship with God, and made me appreciate life, love and family and I thank God for my Little Leah, and the friends we have made along the way.
So when things seem hard and you feel you not cut out for the job, remember that God choose you to be a special mommy and he never makes mistakes…. I decided to add Leah’s sleep time song…..