Leap of Faith

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fotor leahk

Stupid Achondroplasia :)

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 😉

raising Leah

Officially a Dwarf

LEAH

On a resent visit to the mall, I noticed that almost every person I walked past took a back take when they saw Leah, some just using their eyes as they walked past us, others even went as far as stopping to stare…. I don’t want to sound like im exaggerating about this matter; most of the time I just keep quiet because I feel that all people ever hear me speak about is Leah and Achondroplasia!

I feel I have to vent some feeling on this post. The reason why I know that the stares were more noticeable is because my six-year-old daughter Nicole turned to me and asked why everybody was looking at Leah? This is when I realized that there are no more … “I cant notice so much” or the “im not quite sure” stares, this was Official Leah has taken on the full appearance of a “little person” and the reason why its not noticeable to us as her family is because we are with her everyday we don’t see her as being different.

I have brought this topic up during a conversation with one or two of my acquaintances and I was told that being the parents of special children we (the parent) tend to overreact to the “staring thing”, and sometimes people just stare, they don’t actually mean anything by their reaction. At the time of that particular conversation I thought that maybe this person was right and just maybe I am overacting…. but today after some long hard thinking I beg to differ. I distinctly remember one of my first “childhood life” lessons taught to me by my parents, and that was not to “STARE” because it can be considered rude, and if you do happen to see something that you would like to know more about, ask your questions tactfully in order to get an answer.

Society tends to dictate what is “normal” and “acceptable” and I know that there are some individuals out there who believe that people with physical and mental disabilities don’t have much purpose or value in our society. I was once asked the question of weather I would send Leah to main stream or special needs school, when I gave main stream schooling as my preference for her, I was horrified at the reaction I received “ Why would you want to main stream Leah when clearly she is not going to fit in”….  “Why”…   There might be social acceptability issues because she looks different??

SHE IS SHORT!!!!!! Leah is not mentally or physically challenged, who gives them the right to decides who fits in, and what is socially acceptable?

I have come to the realization that I will never be able to change the way strangers react when they see Leah for the first time. I sometimes wonder if I have worked through all my emotions regarding Leah’s achondroplasia, I know that there are some issues that will stay, the biggest being the sense of protectiveness, I will always be protective of her, especially while she is to young to defend herself. I have promised myself that I will raise her to believe that she will be a fully capable young woman who can do anything she sets her mind to. It is disappointing that some people will never change and they have made up their minds as to what is acceptable and what is not, sad thing is there are so much more to life, and they will never experience the true joy of being free spirited, their judgmental ways will consume them as they try to fit into a world that they believe is perfect.

So I say thank goodness I am not one of them… those are the people I fight against, I have made it my mission to raise awareness about Dwarfism, and I will fight to have my child live and enjoy life just as any other “normal” child would, with the freedom of choice to do what she feels will fulfill her dreams.

My hope is that instead of a blank stare, come over and ask her name so that next time you see us you will say, “Hey look its Leah”, instead of  “Hey it’s the little Dwarf girl oh shame”. I really hope that this day comes soon because Leah is such a blessing to us, and we would love to have her touch your heart and be a friend and blessing to you as well.

A visit at the Bougard’s…..

This past weekend was a very for me and my family as we finally got to meet Heather and Richard and of course little Danielle Bougard.. we spent the afternoon together enjoying lunch and chatting about about life in general, Simone and Nicole really enjoyed the swimming pool and spent most of their time in the water… while Leah and Danielle decided to laze in the summer shade and enjoyed the best seat in the house (Moms lap for those that need a little more info)

Danielle is just beautiful and it was so special to finally get to hold her. She is such a happy ,peaceful little soul and we are so happy to have met Richard and Heather who are just two awesome people doing and amazing job of raising a really special little girl.

Its amazing how God puts a plan together….. and im sure this visit was  the start of something good. So before I go on… and… on…( as I usualy get carried away with excitement) here are some pictures of our visit with the Bougard family…. and the pictures were all taken by Danielle’s dad Richard…. who captured some really amazing memories on film

Doctor’s Visit

So today was hospital visit day for Leahs  check up, Leah was clearly not impressed and kept on shouting “Open the door” as a means to escape the check!!! The doctors are very happy with Leahs progress, she walks up and down stairs without support…. but that does depend on the height of the step!!!! so I just had to remind the doctor that her legs are short ( Eeer duh) word count and sentence building is all on track, attempting to dress herself is also a good thing….. does that include walking around in moms shoes???  her head growth is “acceptable” and her growth in general seems to be okay but she has however not had much growth of the humerus….. and she has to return next month because there are some concerns about her knees….. but we have to wait because there are no appointments available until next month… we do however have our MRI scheduled for 20 January.

So today when we walked into the appointment room the receptionist blurted out loud ” Oh my!!! now you can see she is a dwarf… she never look like that before…. she certainty has changed” and I said ” Where is it ?? I also want to see the dwarf” ….by the time we left she (the receptionist ) still had a blank look on her face…. 🙂 And yes I have realized that things are becoming more visual…. thing is ….we don’t see it!!…. we just see Leah 🙂

Standing tall

Standing tall

Hey where did Spring go????

Its the 1st of September!!!!!!!!!!!!!!!!!!!!!!! and we southern hemisphere people usually celebrate Spring Day, its wonderful the sun is out the birds are about, the butterfly’s the new blossoms,

let me give you a taste

Unfortunately, things were not meant to be that way this year, I think Spring decided to sleep in because this is what nature had planned for us ………… Clearly winter is not done with us because Cape Town had a little bit of a hurricane this past weekend, very uncommon for this part of the world, and instead of staying indoors we decided to take in as much of the mother nature as we could….. and oh dear she was angry.

Usually this is Sea Point on a good day

And this is Sea Point on a BAD day…..

Oh my, I’m not doing to well with this stormy stuff…… you know………. being a spring/summer baby myself…. think I’m gonna stay in my warm blanket at bit longer!!!!

One Anniversary And A Diagnosis

Today Is a very significant day for me…………… today I celebrate 6 years of marriage to a wonderful man, how wrong they were about us babes!!!! its been the best 6 years of my life, and you have been an amazing father to our 3 beautiful daughters. Someone asked me………… ” So what have you got to show for your 6 years?? besides having lots of dept that you did not have 6 years ago and 3 children that cramp your freedom” My answer to that was “We in it together, we learn, respect and trust one another we support one another and we will never be lonely” needless to say she had no comeback response to my answer!!!! So my love….. here is to 600 more anniversaries, but that does not mean Im going to stop moaning abut were the laundry basket is!!!!!! 🙂 🙂 🙂

ASHLEY AND CHARMAINE

ASHLEY AND CHARMAINE

So here is the significant part…………………. today exactly 2 years ago on a Wednesday at 2:30pm just to be precise I was told that my baby had a “Serious Genetic Mutation” and they were not sure what quality of life she would have or,  even worse they were not sure how long she would live after her birth……..

“HOW WRONG THEY WERE”

The Big Toe Injury

Leah has injured her toe!!!! I’m not sure how and were, but she bashed it quite badly. For the last 3 months she has been walking around bare foot because we were unable to find shoes that fit her feet. Although it might not look like they have a problem (the feet) she has an extremely high instep, so her feet just can’t get into a shoe at all, so we took her to the orthopedic shoe shop and guess what….. They could not find a shoe to fit that little foot (size 2 by the way) so they decided to custom make her a pair. I did instruct them to make them pretty as shoes are a vital fashion accessory for every little girl!!! and they are going to pad the ankle because she has quite a bit of extra padding on those little legs (chunky legs he, he) , so I will be sure to take some pictures of her new shoes as soon as they come off the production line, in the mean time here are some picture of the injured toe

THE INJURY

 

 

IT HURTS

 

 

All fixed up