Here we come 2015

If there is one thing I want to do in 2015 it would be to keep this blog updated!! Yes I have been bad but hey I have a very busy 8 year old keeping me on my toes… (as well as a 17year old and a 12 year old). I would like to take this opportunity to thank all our followers, all who commented all who shared our post…. EVERYONE!! Thank you for being such a positive source of encouragement. You may be close to home or oceans apart but you are very near and dear to my heart, so lets keep on doing what we do best and keep raising awareness:) Love and Hugs Charms and Leah

By The Way… we are now on FaceBook (raising leah. raising a child with dwarfism in South Africa) go and like us !

raising Leah

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

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

The “Special needs mom”

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 it 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 now 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.

So when things seem hard and you feel you not cut out for the job, remember that God choose you to be a special mommy and he never makes mistakes…. I decided to add Leah’s sleep time song…..

Im Just Little Not Deaf………..

Table Mountain

So my last (What does the future hold) post has sparked a bit of unhappy reaction by my South African friends that are reading my blog. I have been accused of wanting to run away!!!!! And that I’m not making the best of things in South Africa, both my husband and I have jobs; we own a home and a car, blah, blah, blah why would you want to leave and start over…. I understand their arguments, but let me explain to you were I am coming from.

 

I did not say I am definitely leaving I said I am “considering” leaving, and if I do decide to leave it will not be for my benefit but to my children’s… education and future opportunities, and especially for Leah. Thing are not fair and equal in South Africa here are a few example for you….

Leah is due to have a CT scan and if I do this privately it’s going to cost R4000.00, so we try the Government Hospital do you think they were willing to help? NO… they say, “ because you and your husband are employed and earning a fixed income you have to be billed” How much I ask? R3800.00???????? Can I pay it off over 6 months? “ No 3 months” How do they determine what I can and can’t afford??? You look like you can afford it?? My Gosh I’m still trying to recover from Leah’s birth bill.

Lets get one thing clear, I’m not looking for hand outs or wanting free treatment but try to accommodate me…At least look at my monthly expenses and see that I am telling the truth when I say I cant afford the whole amount upfront, but I can pay the whole amount in monthly installments… but I guess that’s not good enough. I don’t want to go on about our health care situation in this country, but people lie about their status, and they get free treatment or huge reductions on the treatment bill, so why don’t I do the same and just lie and abuse the system, you see I’m not like that and if I do… it makes things tough for the people that really needs the medical help its because of those people that abuse our health system that Leah has to suffer, but nothing is being done to stop the abuse and nobody is checking to see who these people are.

Example 2. I found a support group called Little People of South Africa, I sent them an e-mail, I called I got my hopes up thinking I have found support at home, but I am still waiting for a reply and no one answers my calls so……….. Is that what you define as support? I get more pleasure and support from the people I met through Knoahs Blog and the friends who comment on Leahs blog, I define that as support even more so I define them as friends who share in each others pain and joy.

Lets touch on crime in South Africa, its sad that I cant allow my girls to play alone in front of their own home without adult supervision, because they might get snatched, its nothing new kids go missing in South Africa EVERYDAY its become so common that the media does not report every case because there are so many missing kids!!!! We received a letter from Nicole and Simone’s school warning the parents to be punctual when the pick their kids up at the end of the school day, as a little girl was almost snatched in front of the school gates luckily, she screamed and someone came to her aid, the man who tried to snatch her managed to get away, so he is still out there. My little girl attend this school, its all just becoming to close for comfort, lets not talk about the night the cops came shooting down the road we live in, pleading with the residents to lock all door and windows, because six men had just robbed a fast food store and hijacked a car, and these armed thieves decided to run down our street and hide in the surrounding properties, poor Simone was so freaked out the next day she was to afraid to go into the backyard because she was convinced one of the robbers were in the yard. My brother is a jogging enthusiast, there is nothing as awesome as taking an early morning jog on the Table mountain path ways, breathing in the fresh air and taking in the splendid views, but you know what, he cant do that on his own he now has to go in a group or jog where its fairly busy because Yes…. they are robbing the joggers and hikers and old people that go for their daily walks on the mountain, they sit in the bushes pounce on you and beat you up and take what they can!!!!!! How Sick

And Last but not Least, and the most important, Leah’s acceptance into society, there is a huge problem with the acceptance of people with disabilities in South Africa, I want her to be all that she can be I want her to reach her full potential , its funny people seem to think that if you are physically different in appearance, there has to be a mental problem as well, some of my friends speak to Leah and shout at her as if she is hearing impaired? Some of my so called friends has not been to visit since her birth …. I cant wait for the day when she can say  “ Will you be quiet  I’m just little not deaf” What a splendid day that will be, but for now I will say it for her. Im sure any mother would do the same.