As a young single mum of a special needs child
Hi, my name’s Niki and I’m a 36 year old single mum of a wonderful 19 year old son who has physical and mental disabilities. I want to share my story so that any new Mums out there who may be in a similar position can know that yes, It’s a scary thing to be told your child will be dependent on you for the rest of their life but it doesn’t mean you have to miss out on having an amazing and fun life.
I had my son Jimmy at the very young age of only 17 years old via a c-section and instantly, as so many mums do, 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 checkup. 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 as always I thought its ok, we can do this and went about life learning to accept Jimmy’s condition
Little did I know that 9 months down the track my world would be rocked again and this time change our lives forever. 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 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 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 but 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 my mother was yelling at me to come into the lounge room for the operator to guide us and I just kept going until the ambulance arrived who then took over control.
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. Then someone 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.
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. I went just along doing my 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.
My beautiful boy Jimmy is now 19 years old with 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’m still having to get out of bed to check on him every night and 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 I have to shower him, dress and feed him, he can walk slightly with his cane but as long distance walking is too much for jimmy we do need to use his wheelchair buggy if going far. Sometimes I’ll even piggy back him which he loves and as he is very small is size for his age it’s not too difficult for me.
I must admit I do get sad sometimes because I want more for him but I don’t know how to make it happen. I’ve always wanted to be able to take Jimmy for a skate, bike ride, surf or even moto cross riding but wouldn’t even know how I could make this happen. He has now finished school and while I used to try and take care of him and work a full time job when he was at school, I now only work 3 days a week. It’s made life so much better as I can spend my days off with my son and get him out and about trying to keep him happy as possible. It’s also very important to keep myself happy too as I’m a big believer that in order to be a good parent you first have to look after yourself cause If you’re happy then your children will see that and feel the same way, like it’s a reflection from yourself onto them.
I’m at a point in my life where I need a change and I would love to do a bit of traveling but then I think how am I to do this, I can’t leave Jimmy behind and who would take care of him. I get to go out with friends and have weekends away but I’ve never actually travelled anywhere, I do love my life and all the people in it who have helped me with jimmy and I am forever grateful for it.
The next chapter of mine and Jimmy’s life is only just beginning and more changes are happening. He recently started testosterone injections and I’m noticing 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 is still is very much my little boy though and I’m scared as I don’t want to feel this way but I do. I wonder if I will always be doing this alone?
Being a parent can be hard at times whether your child is a new born 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 19 year old 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 actually with my 19 year old since I dont 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!
I don’t think I could live the life I do which makes my Jimmy smile each day without my family, friends, carers and work colleagues. The support they give me with Jimmy is amazing and THANK YOU to every one of them. If you haven’t had the chance to meet Jimmy then you are truly missing out, he will change the way you look at life and you won’t see it but you will most definitely feel it. I am very lucky to have to have raised this beautiful boy I call my son.