Goodbye little angel Sheba Marithe born Novemebr 13, 2007, passed away July 23, 2008

To say that Im sad will be a great understatement, I received news today that little Sheba Marithe had passed away from severe Hypoxia, I met Shebas aunt who contacted me just after I had posted Leah first video on YouTube, from then on she and Sheba became very dear to my heart.The last time we were in contact she told me that Sheba was in hospital with a asthma, and this morning I received the devastating news of Shebas passing.

I know there are no word that can take away the pain and I feel as though a little part of me has died inside.

I feel privileged to have been part of her life and I thank her family for allowing me to have been part of her life.

” Be strong and of good courage;be not afraid, neither be thou dismayed:for the Lord thy God is with thee wherever you may go” [Josh1:9]

The Achon squat……

I got a call from Tonya Sunday evening and we were chatting about the little ones and all the new things they are getting up to, so I say”Leah has started to do this funny squat thing, and she can stay in this position for quite some time almost as if she is sitting on an imaginary chair, sometimes she even walks in this squat” and Tonya says ” Hey Char thats the Achon squat” me ” the Achon squat?” Tonya ” Yes!!! they do this to release pressure or ease pain from the lower back and legs……….Get some pics an put ot on the blog” And me…………. I just think its amazing how the human body adapts to compensate for pain and all sorts of other things…………. all I could say was ” Geee thats amazng!!”

Spinal stenosis in the lumbar spine is very common in young adults with achondroplasia, though it can occur at any age. The narrow spinal canal found in achondroplasia and the normal size of the spinal cord and cauda equina (nerve bundle at the base of the spine) mean that there is less room for the spinal cord in the achondroplastic spine. In some patients, this narrowing of the vertebral canal results in compression of the nerves. Symptoms include activity-related leg pain that is relieved on squatting down, tingling, pins and needles, or numbness in the feet (paraesthesias), weakness of the legs or rarely, disturbances in control of bladder or bowel function (incontinence). X-rays, CT and MRI scans of the lower spine, confirm the diagnosis. We believe that obesity greatly increases the risk of this problem developing.

It was not so easy catching the moment…. but here is the sqat

Theres a little scavenger on the loose!!!!

Leah has been up to all sorts of things, she has developed a little attitude as well, so if I say ” Leah don’t put that in your mouth” she says ” no, no, no, no” or if I reprimand her by saying ” No Leah don’t touch that” she narrows her eyes and loud and firmly says ” GO” and walks off in a huff!!!! so I have had my work cut out for me these past few weeks, she knows what she wants and she hates me trying to help her……… she is determine to do things for herself, even if the teddy is twice her size and she cannot see where she is going, Moma knows not to attempt taking the teddy away……… or we get told ” no,no,no,GO!!!

There is one thing Leah has started doing that Moma is not very happy about, and that is our little one loves checking on whats in the dust bin!!!! Needless to say we have now moved the kitchen dust bin outside because the kitchen bin in particular is her favorite dust bin ….( it contains all the packaging of what Moma should NOT be eating).

So Nicole and Simone were watching a wild life documentry and thats were the scavenger bit comes in. Nicole goes to school the next day and the teacher asked ” Did you all watch the animal documentary??? so who can tell me what a scavenger is?” Nicole answered “I know …….my sister Leah, is a scavenger she eats all the left overs from our kitchen bin!!!” :-),The teacher had to call me to relay the events of the day, and it took her about 15min to tell the whole story because she was laughing so much!!!!

So here are some pictures of the the little Scavenger, with some goods she picked out the bin

F Y I !!!!! NO I AM NOT POKING FUN AT MY CHILD !!!!! JUST SO YOU DON’T GET ALL MIXED UP ……REF Baby bratz post.

Is the coast clear??

Just a drop!!!!!

Hmmmmmmm 🙂

So another phase this is??? I have to admit I scavenge around from time to time….. hope Ashley doesn’t read this post it would explain were all the missing chocolates have gone to 🙂

Angry…………Of course im angry !!!!!!

Im so angry I could SCREAM!!!! , ACTUALLY IM SO ANGRY I COULD PUNCH A FACE……………….. I know I know calm down …………. BREATHE…..

Why is it that people cross the line then say “ I was only trying to help” then you end up feeling bad because you feel like you have been a royal B*##$@ because as they said they were “only trying to help!!!” Well not this time Im so sick and tired of hearing “Im only trying to help” help me by butting out …………. and if you don’t know what your talking about and you are not familiar with the facts then just SHUT UP and keep your wise cracks to yourself.

Well here in South Africa our Oprah show is a little (some times a lot) behind schedule so what our friends in the states have seen months ago, we get to see a couple of months later, and as you may have guessed when I said Oprah today’s show was about the Roloff Family!!!!!! I was quite excited because I finally got to see the much talked about show, and so did the rest of my family and friends, I got so many calls from people I haven even met reminding me to watch the show, …………………..Okay!!

After the show………. Is were my anger comes from; I once again get all these people saying…

“You have nothing to worry about, Leah is just small!!!”

“Charmaine why do you make such a big deal of things she is just small”

“There’s nothing wrong with Leah she will be fine”

“Char did you see the small people they are so cute”

What the hell would you know? How do you know if Leah will be fine? NO SHE IS NOT JUST SMALL!!!! Hydrocephalus, Kyphosis, SLEEP APNEA, BREATHING MONITORS , SMALL AIR WAYS, CHRONIC EAR INFECTIONS, Leah cant wear a pair of shoes and has lived in slippers for the past 21 months  because of her instep !!! Two CT SCANS A YEAR, regular checks for her HEAD GROWTH.

No, she is not just small, this is the reality of what we deal with, and I can hear you saying that Im being NEGATIVE, ………………..NEGATIVE………. ME!!!!!!!!!…………..NO WAY, REALISTIC is the word I would use, and well educated about all of the above, 21months of education to be precise, So if I loose a few friends about this then so be it , because I don’t need friends who I haven’t seen for 21 months to call up after the Oprah show and think that they know what Achondroplasia is about and that im making my child’s condition to worse that it seems.

The show was informative, and I know that Leah’s real challenges in life are still to come….. Will we be okay, IM POSITIVE we will be just fine , because we have been fine all along…………and that without your help, so if you don’t mind Get your facts in order, and DON’T tell me how to raise my child.

When strangers become special friends

In February this year a local baby magazine decided to print a story I wrote about my life with Leah, my aim was to give people hope and inspiration, I wanted the public to realize that having a special child no matter what condition it may be does not mean you have to shy away from society, and I wanted people to know that how we raise our children today will determine who they will become in the future….. and that is strong willed, individuals who will be an inspiration to others.

I received loads of e-mails from people who were really touched by Leahs life and  at the same time I realized that God really works in mysterious ways, I never thought that my experience with Leah would have touched so many people and given so many special mums inspiration to carry on.

One special lady named Jacky decided to stay in contact with me, and has become a blog fan as well!!!. She has two beautiful Daughters named Jorja and Clio.

I think I am truly blessed, because if it was not for Leah, I would not have met the people I know today……….. complete strangers who have become special friends, who share, support and inspire one another to carry on.

Thanks Jacky for all you kind words, you too are a super mom, and special friend.

Jacky,Clio 8 years old and baby Jorja 10 months

A Manicure for Leah….

My friends always say my three girls are lucky to have a mom thats a nail tech……… they will get to have their nails done at any time when they are older, that is true but I start them out young, and Leah just loves having me massage her little hands, and feet and its amazing how quiet she becomes when im busy grooming her hands.

Sometimes she tries to file her own nails as you can see..

And whats a girl without some nail art!!!!!!!!!!!

So maybe I should call my salon Leah’s nail spa!!!

“Dont you just love the hearts!!”

So How Cold Can It Get In Cape Town???

Its been cold!!!!!!! really cold all we have been doing is eating, keeping warm and sleeping……….. pretty much like the bears do…….. HIBERNATE. We do have a few friends in other parts of the world that say ” Ohh it cant be that bad you live in Sunny South Africa” okay I understand your argument but just to show you how cold it can get in Sunny South Africa here are some pictures taken in Ceres, all the cherry trees froze overnight!!!

Told you it was Cold!!!

Bbbbrrrrrrrrrrrr

Keep those ears warm Leah!!!!!!