The things we do for the people we love

On some days, like today. I find it hard to come to terms with knowing that my little boy isn't just disabled. He is severely disabled. My little boy is severely disabled. He may never walk or talk and most likely, he will be wheelchair bound. He has the developmental age of a 6 month old. Mango will be 3 this June. He will be 3 years old and he is developmentally like a 6 month old. He was a 6 month old when he was 1 1/2 years old and when he was 2 year old and now when he is 3 years old. He hasn't moved. When he actually was 6 months old, he was developmentally still like a newborn baby. 

I just want to scream and pull my hair out. Not for myself but for Mango. For a boy who struggles everyday with things that we take for granted. Things that I take for granted everyday because I'm too consumed with taking care of all the things he has been disadvantaged of and things that come to us so naturally, like muscle movement or vision or hearing. 

I am also scared. I'm scared for me. I'm scared that my life will be too short or if I will get a terminal illness that takes away my ability to take care of my children. I'm scared of my heart breaking too many times, it decides to give up.

I'm scared for Mango. I'm scared for his future and what he will be in the next few years. I'm scared for when he turns 5 and he will have to go to school. I'm scared of him going to school. I'm scared of how he will be treated. I'm scared of how the world will treat him. I'm scared that his heart will hurt. I'm scared he will meet horrible and arrogant people that will leave a scar on his heart that I can't mend. I'm scared of losing him. I'm really scared of losing him. I am also scared that he will never know how much I love him. I'm scared that he will never know that I would give my heart to him if he ever needed it and I wouldn't think twice. I'm scared of a life without my heart because he is my heart.

I'm scared for plum and what his life will be like. I'm so scared of how his heart will break a little when he meets mean people that will give him a hard time about having a brother with a disability. I hurt for him knowing that he will have to face these things in life. I'm scared that he will know what it means to hurt everyday to see a loved one struggle with the things that we take for granted in life. I'm scared for his heart.

My dearest husband, who has been the strongest out of all of us. I'm scared that one day he will break and I wont be strong enough to hold him the way he holds me but I sure damn will give it everything I have. 

How do you protect the ones that you love from so much pain in your life. When all you want for the people you love is happiness. If the price I had to pay was my life to give my loved ones true happiness. I would do it. I want them to never know what pain and grief feels like. I want to protect them from all the evil hearts that are searching to break something. How though? How do I do it?

Sydney has been HOT. Like extremely hot. From bushfires to strong winds blowing down trees and sweat raining from your body. Pregnancy isn't helping much when hot weather plus hot body come together, it turns out to be a disaster, my clothes have patches everywhere before I even step out of my house. I used to say I really enjoy the hot weather but now I'm starting to think that maybe, I dont like the hot so much after all.

Apart from the heat, we have been on the go non-stop. We bought a new family car (Kia sportage) and I new double pram (bugaboo donkey), which we will be getting a specialised insert for Mango to help support him. Our round of '6 month follow up appointments' have come and gone, thank god. Our paediatrician was very happy to see Mango making more noises and now weight bearing, although she thinks he may never be able to walk or talk. It has taken a while for us to get used to the fact that mango may always be non-verbal and never physically active. All is well now though. Ortho Doc gave us an all good with his feet, even though he did think that his ankle bone was a bit high still but nonetheless very nicely shaped and bones all in the right place.

Mango is growing up slowly. I feel extremely proud to be his mother and I feel the need to show him off to the world every minute of the day. He makes things so much easier to deal with because of his cheeriness and his ability to make you smile and remind you that everything isn't as bad as it always seems. There have been tough days these past few months, struggling to be ontop of everything and getting rounder everyday but mango's ability 'nothing' as the doctors like to put it, has the ability to make everything better. I have no doubt that he will conquer mountain pathways and climb hills during his journey whether it be in a wheelchair that he is being pushed around in or his on his two feet.

Everywhere we go, people fall inlove with the solider that he is. His changing people and the way they see things without even doing anything except being himself.


Sorry, I haven't been around. I hope to be back real soon!