Sunday, 23 November 2008



This post is dedicated to my little boy. I don't really like to get too deep on here cos, I dunno, some things are best kept to yourself. But I thought, as I do have a lot of readers, I can use my page to create awareness of something that is so close to my heart.
My son has Sickle Cell Disease. As you can see from the picture, he looks perfectly healthy and sometimes I even take for granted (for a split second) that he is ok because his disease is not visible.
However, this is a very serious disease and everyday we (my family and I) have to take precautions to make sure he is well, as a simple trip to the swimming pool or outing to the park could mean he is sick for a week if he is not wrapped up properly, hydrated etc.
As he is getting older, in a way it is a bit easier because he can tell me if he feels pains or is tired, but also he is realising the realities of the disease and I think it kinda scares him.
The other day he had a bad day and was feeling weak and nearly broke my heart when he started questioning the fairness of being dealt such a bad hand. He never complains and him saying something made me realise he must really think about it...
I was lost for words. How do you tell a child that has felt pain you can't even imagine that it IS fair??? I was speechless.
Luckily some friends of mine have given me suggestions of ways to explain to him that he was given this because he is strong enough to cope with it. And it is true. He does all the things the other children you have heard me tell you loads of times, he plays football every weekend (when he is in good health). He just has to rest more before and after as he tires quicker and has asthma too!

So anyway, he had a bad day, which in turn made me have a bad day. But like I said in the last post, if you stay in that frame of mind, things will never get better. My friends reminded me of what a special gift he is and when I picked him up from school he was so full of beans and had probably gotten over it before I did! He is a great example. I know everyone thinks their child is special, and they are, but I have to congratulate my son for his approach to life. He doesn't give up because it is harder to achieve the same as everyone else, he pushes that bit harder. And because of this, despite being the youngest in the class, he is one of the highest achievers. So I am a proud mum!

I have been involved in projects relating to Sickle Cell before and would like to continue to raise more awareness and funds as there still is no cure and there are so many sufferers out there. So I would like you all to support me and will be giving you details on how you can do so in due course.

On a lighter note...this child really makes me laugh. On the way back from dinner last Sunday we were listening to Luther Vandross in the car and he says to me "Mummy is he dead? " and I was like, "yeah, actually he is", so he said, "how did he die?",
I told him "I think he had a stroke", "what's that" he asked. " Oh I think something to do with the nervous system" (probably totally wrong information)
He says "Oh I get it, he died cos he was really nervous"...LOL

I couldn't stop laughing...that was soo cute.

And today, totally out of the blue as we are coming home from dinner again he says to me, "Dinosaurs are way older than Jesus"....I just looked at him and shook my head. The things that go on in that boy's head! LOL

Anyway night people
Till the next time

Nads xxx


Anonymous said...

Nadine, I saw this post and felt moved to respond, you are so strong, having to deal with this as are so many other mothers and fathers that deal with Sickle cell and other medical issues.
Your son sounds like such a brave boy, I cant even imagine how I would cope in the same situation....he is a gift from God, a special spirit sent to brighten up your life and the life of those he comes into contact with.

Back home everyone is asked to check their Blood 'Genome' group to see if they carry the gene or not, I don’t know if anyone is made aware of that over here...with this information you can make a considered choice when it comes to partners.

I am saying this from the position of one that carries the Sickle Cell Gene, I dont have the disease but I carry the gene, that means if I have a child with someone else that carries the gene then our child stands the risk of having the disease, this was something I always had to consider when going into any relationships with the opposite sex. Now as a carrier I do have some medical issues but they are very very minor indeed and don’t prevent me from having a normal life.

As with all things Knowledge is power, options and choices....ignorance is no longer an option...

Simey baaby said...

lil man shud b a archeologist wit dem statements lol

Mr B said...

very inspiring to read nadine

and to think that he still reaches the goals (literally), that others find hard anyway without having that on their shoulders to go with, is a real testament to him.. and the support from his family.