Meet Valentina

In the sprit of Dwarfism Awareness I though I would introduce you to some special little friends living in South Africa

My name is Pamela, I got married to Mick when I was 24 and two years later I feel pregnant with twin girls.  It was quite a challenge, but we managed.  When my daughters where 5 years old, Mick and I decided to try for another baby – I really wanted to have one baby that I could enjoy.  We tried for quite long, and I didn’t want to go on any medication, because I was really worried about having another set of twins.

Three years later we got it right and I was really over the moon with joy.  The doctor confirmed that I was pregnant and it was just one baby, so now it was a race to find a name that all four of us loved.  At about 3 months we went on holiday, and I remember seeing at least 5 special needs children with their families on holiday, I told Mick how I thought this was a sign that something is not right with our baby – he told me it is just normal for me to worry about the baby.  But still I had this feeling that all was not well.  At 27 weeks, the doctor saw problems – and told me that the baby’s arms and legs had stopped growing – ‘what does that mean???’  I had never heard of such a thing, that is just ridiculous!!!  I wasn’t worried about Down syndrome, because I had had all the tests and all were fine.  Then the word ‘Dwarf’ came up, and I was sent to a specialist that confirmed my baby was going to be a dwarf with a condition called Achondroplasia.  I really can’t explain the shock I was in, we knew nothing about this condition and I think I had seen maybe 1 or 2 dwarfs in my entire life.  Naturally we started gathering information from the internet, and then realized it was not such a terrible disability.

The last few months of my pregnancy were really bad, I was so worried that my other daughter’s were not going to accept her, I was worried about was she was going to look like.  I was worried about her mentally, and with all the hormones raging – I cried for three months straight.  My husband didn’t know what to do with me.  Then the day finally arrived and the moment she was born the room, which was full with nurses and doctors, went completely silent…  I could only hear my voice asking ‘Is she alright?’  No one would answer me.  Then I looked at her and she looked completely normal, I think everyone was shocked that she looked like any other new born baby.  The only thing we notice was her tiny little hands, her little fingers and palms where short and fat, non-the-less, they were the most gorgeous hands I had ever seen.  We all fell in love with her immediately, she was just as gorgeous and my other two darlings.

Other than Valentina having yellow jaundice, everything was pretty normal in the beginning.  At 6 weeks we went to the Geneticist, Mick and I didn’t want to do the blood tests on her – thinking what ever she will be, she will be.  The diagnosis was either a severe case of hypocondroplasia or a mild case of achondroplasia.  We were really happy with this, and were given a list of symptoms.  I battled to find growth charts and milestone charts, but realized early on that her muscle tone was not great, so we started with physio and a lot of other activities for her.  Her first operation was of grommets and removing her adenoids at 8 months, which went really well and made a huge difference.  A big concern was her spine, initially it was confirmed that she had scoliosis and kyphosis, but both were not very bad, and were just to be monitored.  At about 12 months the kyphosis started looking really bad, and I struggled to get a straight answer from all the doctors I had seen.  After months of searching for a doctor that knew something, I found a professor that specialized in congenital spinal conditions.  He assured us all was fine and it was just her bones growing at a different rate.  I was overjoyed.

It has been a really long road and a lot of doctor’s visits, Geneticist visits, lots of x-rays and one operation so far, but what has touched me the most has been the overwhelming support I have received from my family and friends.  Don’t get me wrong, there have been many hurtful comments and remarks, but mostly it has been really good.  People are far more willing to except differences than I thought.  I really try to be open and upfront with Valentina’s bone condition, but sometimes you really don’t feel like opening up and discussing it all the time.  I am lucky to have a handful of people that I can turn to if I have had a bad day, mostly my sister which has been a wonderful pillar of support.  It is also sometimes really hard to see children of her age and younger doing what they do, and seeing how far behind she is, but it is something I have to get used to.  I often find myself looking at other babies and admiring their long arms, long legs and beautifully straight spines and think I never noticed that before Valentina was born.  I know she will be able to do what ever it is that she wants to, but as a mother – knowing her battles ahead just to do day to day things is really heart breaking.

As Valentina grew, we notice that she is really a shining light – everyone that meets her falls in love with her instantly.  Her blue eyes and gorgeous smile captivates everyone’s heart.  Now that she is 15 months old and I look back on the past two years, I have grown as a human being because of her.  There has been such hard times, and a lot of soul searching – many tears and questions.  But I think our family has become a lot stronger and a lot closer because of our experience.  At the moment I am just trying to enjoy my three girls, and I know there will still be hard time in the future, but I will worry about them as they arise.  Over all I am looking forward to our future

Pamela and Valentina

Pamela and Valentina

Just being me……..

Its been a hectic past few weeks at home, work seems to be busy and I like that because the days seems to fly past, nothing worse than a dragging work day. The other thing I have realized is that we are way past the half mark of the year!!!! Wow pretty soon it will be time to dust off the old Christmas trimmings!!!

Leah has been doing really well over the past few weeks its been a good winter with not much colds to deal with and her physical development is just phenomenal. She has become our little miss chatterbox, with some new personality traits. I have noticed that she loves being the center of attention!!!!! And she love to socialize with the older age group, now when I say older Im not talking 4 or 5 lets jump ahead to 17-21. How all of this came about is quite funny, usually Leah goes into quiet mode when we are not around familiar faces, but recently she just came out of her shell and is now the party queen.

Recently my niece Cleo celebrated her17th birthday and besides having all the family over to celebrate… it was all the young friends who joined in the celebration well. We had four age groups dominating the get-together, we had the adults , teenagers, 6 –13 years and our little toddlers which would be Leah’s category. She however decided other wise and joined the teenagers who welcomed her with open arms. She chatted, sang Beyonce’ songs… (Leah loves Beyonce) danced and shook her little behind, posed for pictures like a celebrity and dished out hugs to just about all the young guys, yes my little Leah worked the room, and now she is the cell phone screen saver of most of the party girls and boys because to them she is just the cutest, free spirited little girl they have ever come across… There is a twist to this whole story Leah in turn got all the sweets and cakes and soda she could possibly eat from her adoring fans this uncontrolled eating frenzy lead to her being on the best sugar trip ever!!! She has formed a new fan base of friends because they (the teenage party crew) have asked her to visit soon because they miss her so much.

Best of all, they got to learn so much about dwarfism and we made them understand that the “M” word was a NO-NO. I’m sure they took every word to heart and realized that even though she looks different she was just the same as every other little 2 year old, and as the day moved on I could see that her dwarfism didn’t really matter in the end they were just enjoying Leah.

The rest of the family just sat back and wondered were did our quiet little mouse go!!!! I guess she decided its time to break out!!! Well we just had a good laughed because she really was the light of the party and I hope that when she is older she won’t allow anything to get her down, she is such a happy child and she somehow manages to make everyone around her love her for who she is. I’m sure she is going to be the life and soul of many more parties to come.

So I leave you with Leahs new photo look…..


Sleeping in Heaven

Death is never an easy topic to deal with and some tend to shy away from it completely. Danielle’s passing has had a profound effect on our family. I will always remember the first time we met her and her family, we were so excited and Leah had found her first little friend who lived not to far from home.

I have been doing some thinking over the past few days and I realize that sometimes we tend to take life for granted and we forget just how fragile we are. Sometimes we live our lives so energetically  we often  miss out on the little things because we are to busy to see those special moments, like the feel of the wind on your skin or the cute sound a baby makes when they stretch after a long nap. Sometimes we let our thoughts  become consumed with all the things that go wrong in our lives, when in actual fact we should try to reflect on the good and simple things then only do you realize how luck you actually are.

The loss of a child has to be the most devastating situation a family has to deal with, how do you fill the emptiness? I don’t think you ever do, but I do believe in time it will fill with happy tears and soft smiles, because they somehow live on in our memories.

Heather (Danielle’s mom) said something to me the Sunday after Danielle passed away “How does someone you love so much get ripped out of your life so suddenly” I don’t think we will ever get the answer to that question, but I do know that in everything there is a greater plan, and even though we only got to enjoy Danielle for 1 year…. it was a perfect year that God had planned for her life. Leah has a little ritual that we have to go through every evening before she goes to bed, she will name every person she can think of and ask if they are sleeping… and when we get to Danielle she smiles and says “Danielle’s sleeping in heaven” and you know what my little tot!!! You are so right… that is where Danielle and all our other little friends who have passed on are…. safe in heaven and always in your heart.

For Danielle ….

It is with a broken heart I post of the unexpected passing of Danielle Bougard.

Heather, Danielle’s  mother notified us on Friday evening. Danielle held a very special place in my heart and she was especially special to Leah.

I send out my deepest sympathy to Richard, Heather and the rest of the family and we pray that God will comfort you during this difficult time.

We love you always our precious little

Danielle Maisie Anne Bougard

12 of July 2008 – 17 July 2009

Danielle

Danielle

Danielle's little Hand

Danielle's little Hand

Farewell Goldie…..

When Leah was about 5 months old, we decided to get 2 Goldfish for Nicole and Simone. I clearly remember our trip to the pet store and how the girls spent hours trying to choose 2 fish from an aquarium that must have contained hundreds of the little creatures, but eventually a decision was made and so we welcomed Goldie 1 and Goldie 2 as our new family pets. Last year while I was away in Hong Kong I returned home from my trip I found the fish tank  only contained Goldie 2, I was told that Goldie 1 had mysteriously passed away, and from what we were told by Dad its was peaceful departure. We moved on …and Goldie 2 worked through the grief and after a few days had become her usual “happy fish personality” again.

This past week we noticed that Goldie 2 had started to behave strangely, she seemed less happy and excited, she would stop swimming and stare into space and I knew from those signs that it would only be a matter of time and we would have to bid farewell to our little fish friend. So I prepped the girls so that it would not be to hard to handle and they spoke to Goldie every night during her last days.

Friday morning we woke to find that Goldie had slipped away peacefully during the night… and we decided seen that we never got to say goodbye to Goldie 1 we would do the right thing and  give Goldie 2 a honorary Goldfish farewell…..

Leah at 5 months old with Godie 1 & 2

Leah at 5 months old with Godie 1 & 2

A sad last moment

A sad last moment

Leah saying goodbye to her fish friend

Leah saying goodbye to her fish friend

Goldie makes her journey down the porcelain express to fishy heaven

Goldie makes her journey down the porcelain express to fishy heaven