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 !
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
A sad last moment
Leah saying goodbye to her fish friend
Goldie makes her journey down the porcelain express to fishy heaven
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
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…..
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 GovernmentHospital 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, butI 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 homewithout 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.
Its been a week of utter stress, the whole family except me were down with tonsillitis, I was hoping Leah would skip the bug ,and i was pumping her with immune boosters but, no such luck, here little voices is gone and she is running a fever, my work wont allow me time off to nurse her back to health, so tomorrow morning at 7:30 I have to pluck my sleeping baby from her warm bed put her in the car, take the girls to school then drop her off at my mom,only to hear her crying as I leave, because as you know Babies feel much better when they have their moms around them especially when they are ill.
My mind has been a bit of a mudded up mess for the past few days, I have been doing lots of thinking as to what future my kids have in South Africa, I love this country with all my heart, it has to be the most beautiful place on earth, but what is the use of beauty when it is stained with aggressive violance, especially against children, where else have you heard of raping an 8 month old baby!!!! and getting an 9 month prison sentence??? I never thought I would say this but the future does not seem bright at all, especially for Leah. Im tired of people staring at her . I had a grown woman laughing at the size of her head in a grocery store……..all of this and more is turning me into something im not I find that I am becoming more angry as each day passes, I can actually feel the rage boiling inside of me,. Recently I overheard a college joking and referring to Little people as “freaky midgets” and in the same breath she then says, how much her daughter loves “MIDGETS” because she thinks they are cute, and she would love a picture of Leah so her friends can see what a “MIDGET “baby looks like . My reply to her remarks left the office in silence….. and one person said that could not believe that I could explode in such a big way. I’m so tired of explanations all I want to do is get on with life, and I what Leah and Nicole and Simone to get on with life.
Things are going from bad to worse in Beautiful South Africa, some might say its getting better, but not from were I stand, its got lots of growing to do….. especially for kids with disabilities, they are still hiding in the shadows because society finds it hard to accept them.
I was the one who wanted to stay 5 years ago when my husband asked us to leave because I believed things would get better, and could not bear to be away from my mom and dad and sisters and brother they are my family, but now I realize, this is my family now ,and I have to protect them even if it means I have to let go of a piece of my heart ,so I’m considering Leaving South Africa to start a new life for my family.
One SONG can spark a moment
One FLOWER can wake the dream
One TREE can start a forest
One BIRD can herald spring
One SMILE begins a friendship
One HANDCLASP lifts a soul
One STAR can guide a ship at sea
One WORD can frame the goal
One VOTE can change a nation
One SUNBEAM lights a room
One CANDLE wipes out darkness
One LAUGH will conquer gloom
One STEP must start each journey
One WORD must start a prayer
One HOPE will raise our spirits
One TOUCH can show you care
One VOICE can speak with wisdom
One HEART can know what is true
One LIFE can make a difference.
Anger, frustration, exhaustion……………. just a few of the emotions I have been encountering lately, and not to mention guilt. “Guilt”? you may ask, and I say yes and lots of it, why? because for the last couple of days or weeks I have had a rush of all the above emotions surging through me.
I felt like I was failing as a mother, I felt that I spend so much time with Leah that I don’t spend enough time with my two other girls, sometimes I get dinner done to late, I don’t get to read them a bedtime story because by the time I have time to do it they are already sleeping.Am I raising my girls the right way, with the right values, and enough life skills to be successful happy women one day, am I always there when they need me…. the list is endless, but today I realized that I have nothing to worry about……..
Nicole my soon to be 5 year old daughter, had started school for the first time last week, and when I asked her if she had made any friends, she told me she had just made one friend named Ashleigh, One friend?…………. I asked her if she had tried to make friends with the other kids, then she told me that the other kids wanted to be her friend, but they don’t want to be friends with Ashleigh, so she decided to just stick to the one friend named Ashleigh.
So for the past few days, we have had a daily report of our day at school with the new friend. So………… arrive at school this morning, Nicole asked me to walk her to her classroom, and as I open the class door I heard the teacher saying” its okay Ashleigh…. Nicole is hear” and this little girl with long black hair runs over to Nicole and puts her arms around her and says ” I’m so happy you are here, I thought I was going to be alone today” but as Ashleigh looked up, I saw that she had the most horrific scars on her forehead and her face seem slightly distorted, thats when the teacher explained to me that non of the other kids would play with her, because of her face.Ashleigh had been involved in a car accident which left her badly scared, and the kids were afraid of her, except Nicole.
As I walked away I started thinking that in all this time Nicole did not once mention that Ashleigh was different.My little girl saw past the scars and found her first best friend, and my heart is bursting with pride, because few people have such pure qualities, so after today I think its safe to say that I don’t think that I’m doing such a bad job at all……
Raising Leah 