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

What do you think of this??

What do you think of this………..? I don’t know what to think right now ………..but I have been bombarded by people sending me this link thinking I would see some kind of humour in it, and what confuses me the most is the OPRAH the queen of talk shows who has interviewed Little people on her show and knows exactly what they face from the ignorance of a few in society allows this to show on her network????? So I ask what do you think of this.

Little Girls

I enjoy being the mom of three girls, I am what you could call your typical “Girls girl” I have a passion for nails hair and make up clothing, bags, shoes…oohhhh yes I can shop for shoes… At the end of a shopping trip with me you would need new shoes. I guess my love for all things girly rubs off on my girls, and I notice Leah is a true moms little girly!!!!!!! If im doing make-up she want her make applied if im doing nails she wants those little nails done, there are times when she does her own nail paint and she gets angry when she smudges… which happens all the time because that fine motor coordination is still busy tuning (so mom always has polish remover in the house) and she love lip gloss the glossier the better so mom always has to wash the walls because at a lower level of wall space around the house you will find little lip prints often leading to the kitchen and stopping at the sweetie cupboard.

Leah loves having her hair styled (but she hate the wash) and we often sport around with one, or two pig tales, and there are times when we get a bit adventurous, she just loves it when I stick in some colored hair pieces (which I use on my photo shoots), at the moment her favorite is the blond and blue, so don’t worry its just a hair piece in the picture below no hair dye was used during the making of this post!!!!

We have reached a point where sometimes she does not want to wear clothing I set our for her and she sometimes chooses her own outfits which to me seem a bit Avant-Garde at times!!!!! But I guess she is becoming her own little person. I just love the look of excitement on her face when I get her a new clothing item, she just rips off whatever she is wearing at the current time in order to try on the new clothes, only problem is once the new clothes are on we have a struggle trying to get her to take it off!!! And because most of her new things are for the up and coming summer, it’s still a bit cold to be prancing around in summer gear. Because of our little body and head size we have no alternative but to try before we can buy …as all our little people moms know not everything out there is a good fit because clothing is made for average height humans… and unfortunately South Africa does not have a store that caters for little people. So our struggle at the moment is to find clothing, which has a stretchy, or buttoned neck hole, and some clothes we need to send for altering which cost quite a pretty penny. So I think I need to get my sewing skills up and running who knows Leah could soon be the proud owner of her very own little people designer fashion  range… hmmm “little L haute couture”

colour hair

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.

My media!!!!!!!!

Introducing Danielle Maisie Anne Bougard

It has been the best week!!!!! …I received a e-mail from a lady named Heather, she had read a story about Leah which was published in a local baby magizine a few months ago. The reason for Heather making contact with me was because four months ago, she and her husband Richard had become the proud parents of a beautiful little girl named Danielle, she was diagnosed with Achondroplasia a few days after her birth. I am so excited because we are in the process of setting up a date when we are going to meet!!!! So needless to say im so happy and very excited to meet them…….   So before I go on and on here is  Danielle’s story I also got her mom to send us some pictures and im sure you will agree when I say she is just as cute as a button!!!

Danielle Maisie Anne Bougard is the very precious daughter of Richard and Heather Bougard, and the granddaughter of Steve and Colleen Bardwell, and Carol and the late John Bougard. Danielle was named for herself – not for anyone else important – but to indicate what a blessing she is to us all. Her names have special meanings:

Danielle – God is my Judge

Maisie – Precious

Anne – Graceful

We hope these names will turn out to be a prophecy for her life.

Danielle’s Dad and Mum had been praying for a child for nearly a year when they found out that Danielle was on the way, and what an occasion for joy when they learned that God had heard their prayers. They enjoyed every scan and every doctor’s visit before the day chosen for her entry into the world.

This momentous was the 12th of July 2008. Danielle was born by Caesarian Section, and from the first second she was held in the arms of her parents she bestowed a joy so overwhelming it was intoxicating. She still invokes this kind of joy – with just a smile or giggle.

On the third day after she was born, Danielle’s family was to find out that she had a rare genetic condition called Achondroplasia, and that this meant she would be a “little person”, or dwarf. Her family grieved for her, knowing that she would suffer many hardships growing up as a result of this. Danielle didn’t grieve though – it was as though she knew what others still had to learn – that God made her the way she is, that she is just who she is meant to be, and that He never makes mistakes!

Life has changed dramatically in the Bougard household – most of it for good. Toys and play gyms and nappies take up spaces that didn’t seem to exist before. Danielle is a very happy and contented baby. By 5 weeks she learned to smile, at 3 months she started babbling her first sounds and by 4 months she had learned to hold up her head. All of us look forward – in the short term to her next milestone, and in the long term to whatever it is that God has in store for our precious gift!

My Child is Different

During some net surfing the other night I came across a website called Women Today and there I found a really amazing story that I had to share with you…….

My Child is Different

by Alli Vail with Anita Aubuchon

My second husband and I were married on August 5, 2000 and we immediately began talking about having a baby together. Although I was 38 and had three beautiful daughters from my first marriage, I wanted to give my husband a child of his own. We named the child we were planning Zachary Curtis and I told my husband that I knew we would have a boy.

In December, I found out I was pregnant.

The doctor that delivered the girls had retired so I began going to a new doctor. I took the girls with me to one appointment so they could hear the heartbeat. However the doctor came in and announced that it looked like the baby wouldn’t survive after birth.

I sent the girls to the waiting room and listened in shock as she proceeded to tell me that, based on a blood test, it appeared the baby had Trisomy 18 and would die. Hysterical, I could barely hear her say that she had scheduled a sonogram at a local hospital. All I could hear was my baby as going to die. Pulling myself together I hugged my three daughters and told them everything would be okay. Then, I called my husband and started praying.

We kept our appointment for the sonogram and saw a genetics counselor who told us that it appeared the baby could have Downes Syndrome or could be severely deformed and mentally retarded. There was no mention of Trisomy 18. She advised us that we should seriously consider abortion but we adamantly refused, telling her that God gave us this baby and it was up to God to take the baby.

But I was terrified.

What if this baby was severely deformed or some monster? I began praying for a healthy baby and asking God to comfort me. The sonogram showed that the baby boy looked perfectly normal. There were no signs of the webbed feet and hands or malformed ears that come with Trisomy 18. I told the doctor the baby was in God’s hands and I thanked God.

I changed doctors and I had to have my sonograms at a hospital that specialized in sonograms for my age group. When I was seven months pregnant, the new doctor scheduled another sonogram. He said that our baby looked good except his arms and legs were shorter than they should be for his stage of development.

When I went back for the next sonogram, he measured the arms and legs.

He told us that the upper arm bones and the thighbones were not growing normally and that the baby had a mild case of achondroplasia dwarfism but his heart and chest cavity looked normal. I had never heard of this and the questions running through my mind were endless. I continued to pray.

I was once again shocked. What did the doctor mean, dwarfism? Why couldn’t I have one more normal baby? Could this be fixed? Even though I knew it might true, I prayed the doctor was wrong.

I read everything I could on the Internet about achondroplasia dwarfism. The questions kept running through my head — why me? Did I do something wrong? Is there a cure? Would I love him? I just kept praying. Only now, I prayed for strength, guidance and understanding.

At my next appointment, the doctor explained that normal height parents could have a baby with achondroplasia and we had done nothing wrong. I told the doctor that God obviously felt I was special enough to have this baby.

Two weeks past my due date, I was scheduled to be induced. Scared, I prayed and felt comforted. Close to Zachary’s arrival at the hospital, I got scared again. I started thinking about all the things the Doctors had said. Would my baby live? Would he be okay?

Zachary arrived.

He was beautiful; dark hair, ten fingers, ten toes, two ears, two eyes, a healthy set of lungs and weighing 7lbs 14ozs. He looked like any other baby, well proportioned and perfect. I did not believe he had achondroplasia dwarfism.

When Zachary was four months old, his doctor scheduled an appointment at a children’s hospital’s genetic clinic because he was concerned that his legs and arms were not growing normally. At that appointment he was diagnosed with achondroplasia dwarfism. I knew he was different; I just didn’t want to face it. When I bathed him he was all head and tummy.

I again got on the Internet and read everything I could. Zachary would be between three and four feet tall. We would have to reconsider all the everyday things that we had always taken for granted like reaching for light switches, the toilet, and doorknobs.

Sitting out in the waiting room for his six-month check up again filled me with doubts. Looking at kids his age was tough. Other mothers stared and commented on his small size. I wanted to say that their babies are so big.

It had never occurred to me that I would ever have a baby that would illicit stares.

It took me a long time, but I realize that Zachary is normal. There is no cure because he does not have a disease. He is just short. I realize that it’s impossible to predict how tall, pretty, smart or successful any child will be. Only God knows what Zachary’s future holds.

I believe that I have this baby for a reason. It may take me a lifetime to understand why, but it will be lifetime of joy. All my children are special, but Zachary is a different kind of special and he is a blessing to my family!