Parents

Being a parent of a special needs child is truly something I would call an emotional roller coaster. You think nothing can get worse but somehow it does. You feel as though your getting your feet on the ground again and somewhere along the road you tripped and fell on your face realising that your not quite there yet. You tell yourself and deep down in your heart you know that one day, you WILL get there but damn it - someone please tell me WHEN?!

We, who are so blessed to have someone in our life that might have a disability - understand what it means to be put to the test of what our unconditional love means. We wake up every morning ready to start a new day. Ready to fight for our children's challenging abilities. Whether its the simple things that we are trying to succeed or the more difficult things that us 'typical' people carry out as nothing. We NEVER prepare ourselves for what the next day has in store for us. We don't bother because we don't know what it holds. Today is already too much.

I start to think of all the people that I have crossed paths with during my life as a mother of a special needs child and I being to realise that there is a pattern of ignorance when the word 'special needs' is added to the conversation. Early on after Mango's diagnosis, I had to make the decision on how I would explain to people who had no experience of caring for someone with special needs. As much as I feel like throwing my arms and legs in the air like a child throwing a tantrum, I chose to educate people about children with additional needs. Ofcourse, because I love the fact that I put the extra stress on myself but I do it anyway. If not for myself and my sanity but for Mango. All people see from special needs or disability is hard, limited, worthless, handicap but noone ever stops to look at my child to only see that inside those loveable eyes there is a warrior. A strong soul that refuses to stop trying.

So heres the thing... When me and husband found out we were expecting a new addition to our family - it didn't start off by going to centrelink to fill in form and accidentally tick the box 'health problems'. All we knew was that we wanted him in our arms as soon as possible and not in my belly. When we were told of Mango's diagnosis, I wont deny the fact that we were both shocked and scared but it didn't mean we wanted to turn back time. We still wanted him. We still loved him the same way when we found out he was on his way. The only thing that was different was the way we would lead our lives. We now knew that he had to fight everyday for the simple things. Seriously fight... We had over 3 months intensive therapy to open up his thumbs. His thumbs!

We spend everyday in what I like to call 'play therapy'. For the days that we aren't spending in  a hospital waiting room, we play. We play opening our fingers, we play chewing, we play sticking our tongue out, we play standing with our whole foot on the ground, we play with turning our heads from side to side, we sing and sign in AUSLAN because unfortunately for my child, these simple things feel like climbing Mount Everest. These simple and natural human abilities have been a battle for him.

Don't get me wrong though, I have no problem with this. Except today, I feel a bit cranky. Please don't be offended with what I say here. I truly do not mean to be rude in any way and I am very sorry if you do.

I truly believe that parents with typical growing children, who have no experience with what special needs is like dont really understand that real meaning of appreciation and I understand that, they probably never will. That is so fine with me because I understand that you can't really appreciate something until you lose it. OR maybe I've got it all wrong here, maybe what I'm saying is that people need to think before they speak. I can usually suck it up when I hear a parent brag about how advance or bright their child is and that's great! There is no problem with having pride in your child for accomplishing something early or even accomplishing something but please don't rub it in the face of a mother who's child is nearly one and can't even lift his head properly. Once - twice - three times and thats enough. Would you in your right mind complain about how your child is driving you insane if the person you were talking to had recently lost a child? No. Daaaahh...

I'm sure many parents know exactly what I am talking about. So please be considerate. We want to celebrate with you, your children's accomplishments but you don't need to keep rubbing it in our face. And those who say things like 'I wish he would just stop walking! He walks to much and touches everything'. Please I know what your trying to say is 'He is very active and sometimes its a bit overwhelming', so please say it as it is and DO NOT say that you wish your child would stop walking! You do not wish that because I pray that god forbid that your child stop walking one day, you will be wishing that even though you never meant what you said at the time - you definitely will be wishing that those words didn't come out of your mouth the way they did.

It truly hurts to the core to see the look in your child face and see deep in their eyes that they want to play with the children but not physically have the ability to do so. It crushes your heart to see your baby not developing and see the kids around him who were born after him develop into strong able toddlers.

OMG. I just realised that I haven't stopping typing. If you haven't got bored by now. Thank you dearly for reading.
xxx

MRI

Mango had an recently had an MRI for his brain. Can you have an MRI for other parts of your body because if you can, I certainly didn't know that. The surgeons would be like 'Do you know where the MRI will be done?' - I would pretty much be like 'heh?! His brain, no?'. I sat on the hospital bed, holding Mango and watched my little boy smile and try and talk to me while the surgeons put the gas mask around his mouth and nose. He was talking happily and watching him slowly fall asleep felt like I was letting him go. We gazed into each others eyes until he slowly drifted away and the whole time all I could see were complete trust that my baby had for me. I somehow felt as if I was betraying him. My heart was breaking, becoming whole and breaking all over again countless times. In a split moment I visualised my son slipping away from me rather than just falling asleep. I gulped down the biggest rock that was stuck in the throat. Next thing I knew I was being showed the exit to wait in a waiting room where many other anxious parents were waiting. Being around anxious parents pacing up and down and everyone trying to put on a brave face - was a lot of help. Ehh.. Who am I kidding. I was ready to have a panic attack run around the corridors screaming 'GIVE ME MY BABY BACK!'. 

Thank you Allah for my husband. 

He took me for a walk and coffee to calm the nerves. All while the image of Mango staring at me until he fell asleep in my arms. I have to admit, I have never drank coffee faster than I did that day. I just wanted to get back, walk up and down the hallways and wait for a nurse to call me in. An hour later, the anaesthetists we spoke to before the MRI came to let us know all went well and that they were just going to give him a few minutes to wake up. About 5 minutes later I heard a loud screeching cry coming from inside the ward. I knew straight away it was Mango because he has that hold-you-breath-and-scream type of cry. A nurse called me in to calm him down which I happily did. After 2 hours in recovery, we were allowed to go home. I don't think I could ever do that again...

Support

Today, I wanted to talk about support. I want to try and explain to people who want that understanding of what parents of special needs children and special needs children themselves go through. I typed and deleted and retyped and delete over and over again. I feel as if I need to play my part in helping raise awareness for the community and help them understand. I originally started off by trying to write and post up information about certain things and write about our daily lives and the things that we go through (which is also to try and help people understand what journeys we take) except this is different. I think it is anyway. I pray I do this as much justice as it deserves.

I've been to so many appointments and countless times have they asked if I have support. It was only recently that I asked myself, what is support? Is it to help take care of my children, to have someone to talk to, to help me clean my house, to buy my groceries or to cook me food. What is it? Its all of them, one of them or a few of them. Unfortunately, it's never none of them.

Most parents don't really care if the physical support is there or not. We love it ofcourse but what we look for most of the time is the emotional support. Like all families there are always ups and downs and most of them are very similar and some are very, very different.

Physical support is awesome. It is so difficult running up and down for appointments that we parents begin to forget about the life that we are actually leading and for parents who have more than one child, it can be extremely difficult to give all children the attention they need. I mean I'm sure its hard enough to juggle two typical growing children and then we change on of those children to a special needs child - who requires you 24 hours/7 days. No more time left. Helping with physical support can be grocery shopping, running errands etc. and sometimes it's all about giving a parent a five minute break to remember that they have a body to take care of aswell.

Emotional support (I speak for all parents with any type of child)... it's the same for everyone. It changes the way parents and people lead their lives. A small 'hey, your doing great!' can change the whole attitude for the day and make the rest of the week a very good one. Sometimes our days have been filled with stress or bad news and all we need is to let off a bit of steam or maybe some loud thinking with somebody near by to listen but not talk.

Maybe the best advice I can give on this post is that if you ever see a parent of a special needs child crying, the only thing you really need to let them know is 'Im here'. That's all. 
Sometimes our grief and pain get the best of us when we let our guard down and our scar tissue can't keep it together and we break. We break into a million pieces because somewhere along the 2 minutes that we were just looking at our child who can't walk, or talk, or has an oxygen tube attached to their throat, or a feeding tube that runs through their belly button carried by a back pack that has become a second limb without even noticing, we realise that our child may be like that for the rest of their lives. Dependent on something to help them with the most basic things in life. We realise that our child may never grow up into an adult and be that dream that we always dreamt of. It dosen't matter how many times or when we came to terms with that dream, the hurt doesn't change. It always feel brand new. So, just by letting a parent know that you are there, helps. I don't know how and I don't know why. All I know is that when your broken for so many reasons that you can't even remember them all, it helps to just hear those comforting words of someone letting you know that they are there. Knowing what a parent is broken about isn't as important as making sure they don't feel alone.

For all parents... from me to you