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The Beginning

I had my son Jimmy at the very young age of only 17 years old on the 11th of April 1995 via a c-section and instantly, as so many mums do I thought of all the hopes and many dreams I had for him as he would grow up into a man. I wanted him to be everything he ever wished for himself and support him in whatever choices he would go on to make in life. All a new mum wants is their newborn child to be healthy and happy which my Jimmy was but little did I know that in 2 months time my world would change.

One day Jimmy’s Grandmother asked me why Jimmy wasn’t looking at any of the toys, I wasn’t sure and hadn’t noticed before so I decided to be on the safe side and booked Jimmy in for an eyesight check-up. After lots of testing I was left sitting in a room with Jimmy on my knee when the eye specialist came over and muddled something with a little flashlight waving around in front of Jimmy’s eyes. I don’t remember what was said but all I asked him was can Jimmy see and he said no, I asked if he would ever be able to see and once more he said no. Jimmy was diagnosed as legally blind. It was quite a lot to get my head around but because I am who I am I thought its ok, we can do this and went about life learning to accept Jimmy’s condition. There was time when I would continually ask myself why did this happen to me, what did I do wrong? and For the first few years there were lots and lots of tears. Still happens now but not for the same reasons because sometimes it all gets a little overwhelming and I feel very lonely.

Then again, 9 months down the track my world would be rocked again and this time change our lives would change once more, One evening while I was making ornaments to put above Jimmy’s cot I left the room to go and watch a movie with my Mum & brothers. For some reason though I had the urge to finish what I started and walked back into Jimmy’s & my room and that’s when it happened. The first thing I noticed was that Jimmy was as stiff as a board and I screamed and ran with him out of the room. I passed which was more like a throw Jimmy to my mum and rang 000 straight away as she took jimmy into bathroom. I was screaming so loud the operator didn’t even know what I was after. My mother came back out and told me to see Jimmy in the bathroom and she would arrange the ambulance.

I was so scared and didn’t know what was happening when I went into the bathroom & one of my brothers Jay was yelling at me because I turned the hot water to splash on jimmy not even thinking right, then all of a sudden I looked down at my little boy who was turning blue in the lips and going limp and something just came over me! I knew right then and there what I needed to do so I started mouth-to-mouth resuscitation with my brother by my side. My mother was yelling at me to come into the lounge room for the operator to guide us and I just kept going while my other brother Nathan was outside waiting for the ambulance to arrive, once they did they continued mouth-to-mouth resuscitation.

On the way the way to hospital they told me if I hadn’t have gone back into the room or even started mouth-to-mouth I would have lost my precious little boy. I had never learnt how to resuscitate but I had read it in many baby books while I was pregnant with him, which I now know helped save my son’s life. After having tests done in hospital we found out that Jimmy had been diagnosed as having epilepsy which over time had us in and out of hospital with longs stays as Jimmy would always stop breathing and need treatment.

By the time Jimmy was 3 years old he hadn’t had a seizure in a few years but all the medication he was on was making him sleepy and not happy so I decided to take him off them. I knew the consequences if I did this but I was his Mum and I was willing to give it a go and it turned out to be the best decision I made as all went well and he never needed the medication again but there was still something that just didn’t seem quite right. I took Jimmy to get a second opinion while I was on holiday in Perth and the Doctor asked me if I had ever been to an endocrinologist who could give me second opinion and that’s when we found out the extent of what would be Jimmy’s physical and mental disabilities. It was discovered that his hormones, that play vital roles in digestion, heart and muscle function, brain development wasn’t functioning and his Pituitary Gland also didn’t work properly making his thyroid not active also. I think somehow though by finally knowing exactly what we were up against it made things better for us going forward. A few years we also went and had an operation to put a feeding tube in jimmy stomach because he wasn’t eating and had lost a lot of weight. After the op the stuff they gave to me to feed through the tube drinkable using cup, which annoyed me, as they didn’t tell me this before. After a few months of not using the tube and just giving him the drink orally we went back to have it removed only to be told me they wont be removing it and putting in a button that’s when I got angry I actually made one nurse cry I felt bad but I knew he didn’t need it and I was standing my ground. They eventually listened and that day removed the feeding tube. If you ever meet jimmy you will see his scar. This is where I learned to really listen to doctors and ask lots of questions before agreeing to anything.

The first few years Jimmy’s physical and mental disabilities weren’t an issue. Jimmy was so young and little that nobody could really tell there was anything wrong with him, not that I was afraid to tell people the truth cause I was always open and honest about Jimmy’s condition. We just went along doing our own thing although I did get judged because I was such a young mother but I didn’t care. I remember one of my friend’s father telling me that it’s only going to get harder but I laughed it off and thought as if, but when I look back now he was right. The reality of it all is it IS harder now than it was back then.

Schooling was a huge part in our lives and Jimmy absolutely loved it, catching the bus every morning he would have a huge smile on his face even when he came home I knew his days were awesome because he was so happy. While I used have after school care and sometimes my brothers would help care for him, I would work a full time job, I now can only work 3 days a week as jimmy has graduated, that day back in 2013 lots of tears were flowing.

My beautiful boy Jimmy is now 21 years old he is an old soul. He gives the best cuddles, has the biggest smiles, always happy and loved by everyone he meets and that’s because I’ve never made him feel any different from anyone else and to me this is “normal” but to another parent with a child the same age I can see I have a very different life. I do get sad sometimes because I want more for him, I’ve always wanted Jimmy to be able to skate, bike ride, surf or even a ride on a motor bike but this will not happen the way a "normal" person would do it.

I’m still having to get out of bed to check on him every night and maybe change his nappy, sleep for me has always been interrupted and if I get a good night’s sleep where I don’t wake up at least once then it’s a miracle! Every Morning when Jimmy wakes up he has either done a Bowel Movement which has leaked or is on his fingers, Peed or dribbled on his bed, so washing sheets is an every day thing, If this doesn’t happen we are so happy, lots of YAY’s. Then I have to shower him, dress and feed him, he can walk slightly with his cane but long distance walking is too much for jimmy we do need to use his wheelchair buggy if going far. Sometimes I’ll even piggyback him, which he loves and as he is very small is size for his age it’s not too difficult for me.

I try to do the best I can to make jimmy happy by taking him out and about and doing lots of activities with him.

I’m also a big believer that in order to be a good parent you first have to look after yourself because if you’re happy then your children will see that and feel the same way, like it’s a reflection from yourself onto them.

The next chapter of mine and Jimmy’s life is only just beginning and more changes are happening, back in 2014 he started testosterone injections and I noticed a few changes in him with puberty to be honest I shit myself its scary this little kid is growing up but still physically looks like a child. He stopped the injection for a year and now is back on a tablet form which seems to be a whole lot better for him. In recent months he started having seizures again but I think I have got to the problem that might be causing it, Jimmy is Adrenaline insufficient and stress and other factors could be the reason but I’ll keep monitoring him because like always mum knows best. He is still is very much my little boy and I’m scared, I don’t want to always feel this way but I do.

Being a parent can be hard at times whether your child is a newborn or an adult, we worry about the smallest things only because we want the best for them. Every one of us has different ways we parent our children and that’s what makes us all unique. Some of us struggle more than others, we all get sad sometimes and we all have doubts are we doing our best. I might do things a little differently to another parent who has a child the same age but each morning if I wake up sad, I see my boy smiling at me and I know that whatever I am doing must be right because he’s always happy which makes me happy. Maybe I have the better deal with my Jimmy since I don’t have to worry about his rebellion stage, getting into fights, drinking too much, driving like a hoon or getting a girl pregnant, always a bright side right!

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