So i have Achon……

It’s been fairly calm the last few weeks, Leah’s health has been good, and we have been enjoying the last few weeks of summer, sadly the air is cooler than there is that distinctive chill in the evening breeze. So I guess we going to keep a close eye out for that nasty flu bug as we heading for that time of year again… Winter!!!!!

I must let you in on Leah’s new favourite word “Achon”. As you have read before she now realizes that she is a little person. Its not easy because we have moments where I can see she seems really sad about it, she often asks me when she will be taller and sometimes she gets frustrated when she cant reach things, or when her foot wont fit in the pretty pink shoes, or when her head can fit through the neck of the pretty sweater. I feel her emotion and it’s hard for any mother to see the disappointment in their child’s eyes, even when it’s not something you would consider a serious issue.

But there is a lighter side to things, Leah has a great spirit, she does not let disappointment get the best of her after a while she seems to accept that sometimes its just not a bright idea to force her cute foot into the shoe that clearly wont accommodate that achon instep, sometimes when the sweater wont fit, she runs around scaring her sister saying “Leah has no Head” we just have to have a giggle because I realize that she is slowly starting to accept her body and most of the time she seems to be fine with it especially when she rubs her round belly and says “make a wish” LOL, but what  I love the most  is when I see how her captivating personality simply makes people fall in love with her she has a such a pure energy with so much love to give, at the same time she has a really good sense of humour…quite sharp at times  let me give you some priceless  moments…

Recently a friend of mine gave birth to a little boy, when Leah saw the baby she said “ Mum he is way to small, I think he has Achon” . One evening I had a problem getting the girls to eat their vegetables and without thinking I said “You are not going to grow if you don’t eat your vegetables” Leah said  “Duh… I have Achon, not going to grow no matter what I eat” that one had me burst out laughing and how was I to counter that comment. The best is when she met some kids who are younger and taller that  she is and I  said “Leah why don’t you go play with your new friends”, Leah rolled her eyes put her hands on her head and said “ Oh my gosh why do I have to play with  the Big Babies I have something else to do right now!! ”

So unfortunately there are going to be sad times, but best of all we will have tons of light-hearted happy moments I love these moments cause they make you realize that things are actually perfectly balanced. I have always been a strong believer in the energy we hold within us and it’s so important to keep that energy positive in our home. Leah knows that she is unique inside and out and just being around her makes me realize that feeling down is only but for a moment. No matter how bad things may seem at times this too will pass, and as a mom I focus on assuring her that its okay to be sad, its perfectly acceptable t laugh at yourself, and never let those ugly negative people steal the joy you have within you.

HAPPY 4TH BIRTHDAY LEAH!!!

Happy Birthday my little princess Leah, we love you so much. The past 4 years have been amazing, you have changed our lives forever and we find ourselves doing things we never dreamed of doing you have inspired me and taught me that I can do anything i set my mind to, and I thank God he made us be your family, so happy birthday my sweetheart and I look forward to many more happy birthdays with you.

Love Mummy. Daddy, Simone and Nicole

Sunshine ……

We went through all our unmarked disks and came across this video, I posted it on YouTube about 6 months after Leah’s birth, after that I started the blog, I was so emotional while watching it the tears just flowed …. I felt so silly because I realized that my little sunshine was not so little anymore…. guess its true what they say time waits for no man.

Happy 3rd Birthday Leah

I am very late with this post, but better late than never!!!!!!!!!!!!!!!

I tend to get a wee bit emotional when I think back to the day Leah was born, so I decided to to a blast from the past with one of my older post….. Leah my baby we have hit a huge milestone in your life, you are 3 years old , we have been through so much this past 3 years, but if there is one thing we know for sure we love more and more with each passing day.

The “Special needs mom”

2008 March 4 by Charmaine

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 that question 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 know 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.

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”

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 her17^th 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.

What new???

Its been quiet for the past few days, but there has also been some exciting developments taking place. We have officially had our first parents of little people support group meeting!!!!!!!!!!!!!! it was fantastic even though we were only 8 parents we see it as a fantastic start to something we hope to grow!!! for the moment Leah is the baby of the group and in all the excitement I realised I never took one picture , but not to worry im getting some of the other moms to e-mail me a few pics and I will be sure to post them as soon as I can.

As far as Leah’s progress, well she still has no interest in the potty!! I have been trying but all she says is  “no go potty”, the interesting thing is she cant stand the feel of a wet diaper, so ever so often we will find our little one running around the house missing this crucial piece of moisture capturing clothing. Recently I have discovered the cutest limited edition Huggies diapers which look like little denim shorts, and would you believe she keep these on even if they are close to exploding…

She has also been trying hard to dress herself and finds it awfully funny when her head won’t fit through the neck hole!!

Leah has also found the perfect resting spot after a long day of making mummy run around the house, so the arm of the sofa has become just the right spot to catch up on some well deserved shut eye

We have been struggling with some nasty ear infections to be more accurate we have had a total of 5 ear infections since the beginning of this year , Leah’s will be undergoing surgery for her tubes, tonsil’s and adenoids on the 17th of July so I guess I have to be patient, I just wish we could get a sooner date and July is also our peak winter season and having a operation in winter just seems so harsh so hopefully with a little persuasion I can get the doctors to move our date a little closer!! So besides all the medication for pain (ear pain) Leah has created her own way to ease her ear ache…. she fold her ears!!! And I was wondering have any other little ones done the same?? so I find myself  up at night unfolding her ears, because the last thing Leah needs besides the short stature is the have cauliflower ears!!!

Our Christmas Miracle

A few days before Christmas, I was feeling very heavy hearted about life in general…. On the fanatical side of life things could be better, the house needs work, the girls school fees for the new year need to be budgeted for, Christmas gifts, Leah’s up and coming hospital visits, its like our snow ball just keeps on growing and I was feeling tired, emotionally exhausted I remember waking up and asking God why everything had happen to us, I remember saying “I don’t mind the snow balls Lord….just stagger them if you can, why do you send me a huge ball of difficulties…..I just cant handle everything at once, I need a break to breath,” I was angry and I hated the heavy feeling pressing on my chest.

Christmas Eve my husband and I decided to do our last Christmas shopping, with what was left of our free spending cash, we were going to do the shopping on our own but Heather and Alex (my brother and sister-in-law) decided we make this a group outing, so we waited and left for the mall in one car, we were planning to go to a mall close by but on the last minute Alex and Heather said we should skip the little mall and we took the off ramp to the big mall a little further away…………… now this is were our story begins

• 1^st blessing….. The mall was surprisingly quiet!!!! We had missed the flurry of crazy shoppers and breezed from one store to the next without any problems!!!

• 2^nd blessing we found the most beautiful gifts for the girls and Aunty Heather and Uncle Alex decided that one gift was just not enough!!!! So we left the store with so much more than we expected

• 3rd …blessing Ashley got hungry!!!! Yes only my husband would feel hungry after having breakfast about and hour before we left, he was the only hungry one in the group and he made us pull off for a pits stop at a little coffee shop.

• 4^th blessing…. Leah decides to smile and wave with a gentleman and kind lady sitting at a table close by

• 5^th blessing… the gentleman walks over to our table and hands Leah the cutest soft toy and says that she has been smiling with them all this time and he just feels the need to give her the little toy dog as a early Christmas gift, I was so touched that a stranger could be so kind, I then go over and thank him and the kind lady and at the same time I hand him the web address for our blog

• 6^th blessing… a few minutes passes by and the gentlemen returns to our table, this time he takes out a role of money and says that he feels he need to bless our family with this cash and he puts the money in my hand gets up and walks away, now by this time I am in shock my husband has no expression on his face, I don’t know what to say, this time I go over to them and ask them why??? They don’t know me?? What stranger just gives money away??? He introduced himself as Steve from Ambassadors for Christ now when he said that I had goose bumps all over!! The lady who’s name is Heather had tears in her eyes and all she said was “Because you were obedient to God and kept Leah he will always provide just carry on and trust God he is real” Steve then tells me a story of how they were not suppose to be in Cape Town, they were actually visiting friend in Durban who decided to bring them along to Cape Town for a holiday!!! I am so overwhelmed by what happened and I thank them and walk back to my table

• 7^th blessing Steve returns to my table and says that God had spoken to his heart while I was holding Leah and speaking to them at their table and he handed us another role of cash, he smiles wished us a merry Christmas and walked back to his table.

We were not suppose to go to that specific mall in the first place, we had such a huge breakfast before we left I could not understand how Ashley got hungry so quickly and our plan was not to stop for any snacks bcause we had limited time to do our shopping!!

God blessed us with two thousand rand in cash, two thousand we never had when we started our day!!! I only realized after everything took place Leah was so happy and friendly, she blew a kiss at Steve and Heather as we left the coffee shop and its not like  Leah to be so friendly with strangers, but obviously she saw more than strangers…  im sure she knew what God was doing through these people.So I sit here today replaying the events of Christmas Eve over and over in my head….. And I’m speechless, as to what can only be the work of God….. I know now without a doubt that God has a plan for our family, we just have to trust him; he used two complete strangers to erase whatever doubt was left in my mind…. How awesome is our God!!!

Merry Christmas Everyone

This past year has been a very emotionally challenging year for me, there were times I felt like giving up, but I realized something, the reason why I stayed strong is because I am surrounded by so many special  family and friends. Because of your positive and caring encouragement, I always know that I’m not alone and you will always be there for me. I often get told that it takes “special” parents to raise a “special needs” child, but I believe that those “special” parents also need “special” friends to help keep them grounded for the task at hand.

So from the bottom of my heart I thank you for being my special friends and I look forward to a new year which I’m sure will have some challenges, but I know I’m not alone because I have found truly amazing people to share my life with.

TO ALL THE SPECIAL PEOPLE THAT ARE PART OF OUR LIVES…

WE WISH YOU

A BLESSED CHRISTMAS & ALL THE BEST FOR 2009

MERRY CHRISTMAS EVERYONE