Niki and Jimmy: disability, love, laughter, happiness

Niki carrying her disabled son Jimmy on her back

My goal in life is to share my story and life with Jimmy in the hope that what people see or read will help them through whatever may be going on in their world, and to love and trust that anything is possible!

Meet Niki
I was born in Perth, Western Australia but grew up in Bundaberg, a town in Queensland, Australia. When I was 13, we moved to the Sunshine Coast, Queensland, Australia, with my mum and two brothers. High school wasn’t my thing, and I left at the end of year 10. Not long after leaving school, I fell pregnant with Jimmy and the young age of 17 years old. Jimmy was born in Nambour hospital via c-section on the 11th of April 1995, and we had a hospital stay for about three weeks. Everything was good, but I was so young, so there were just some things I did not pick up on. His grandmother noticed that when you would hold a toy in front of his face, he would not reach for it, nor would his eyes focus on it. So I went and had Jimmy’s eyes tested. This was when he was around two months old, and not long after is when I found out, he could not see and would never be able to see. So I did what I needed to do, and that was to be Jimmy’s mother regardless of finding out about his disability. When Jimmy was around eight months old, he ended up in the hospital, and we found out he would be diagnosed with epilepsy. Again I just did what I needed to do. Life goes on. When he was three, I decided to try to ween him of the epilepsy medications because he hadn’t had one in a couple of years, and everything worked out; he never had an epileptic seizure again. On he went to a special school. Then at the age of 17, he would be diagnosed with diabetes insipidus and panhypopituitarism.

I worked full time during his school years, but once he finished, I no longer had the support or care, so I dropped back working to only three days per week. During this time, Jimmy would have a few more seizures, and I worked out what was causing these and fixed the problem without medication.

Jimmy is now 26 years young, and I am 43; we both have learnt a lot and are always changing to better both ourselves. I now have more time at home with him, teaching him everyday skills and learning new skills myself. Our life has come with struggles, but we have overcome each one with our love and perseverance and determination to grow.

I have a blog that goes into more detail about where it all started the day Jimmy was born its an insight into our life; you can find it here. www.nikiandjimmy.com

Social Isolation
I still feel like this at times. I have even said to my friends who have children it’s not that I don’t want to go to kids parties or gatherings with lots of kids, but over the years, I have watched children all play together, and Jimmy is always left out. He can’t run/walk/play like the other children, so he has to sit with me the whole time. Though it doesn’t bother him, I was once a child and I had those feelings of being left out, and I know he can hear them all playing and laughing together. This isn’t anyones fault; it just makes me feel sad sometimes. I see their kids growing up doing the things that Jimmy never did or might never do.

Being mum, I think in itself you feel isolated from your friends at times. They are all out having fun, and there are times when you just can’t be out with them. Being 17 and a mum was hard; I really didn’t have other mums who were on the same level as me. So I didn’t have people I could talk to about anything, and if I did, I would cry and have those friends say, “you always cry”. I have been around women who talk about their children going to high school, then getting their licenses, jobs and then leaving home. I never know what to say; I just sit there because that won’t happen to me. It’s awkward for me when they do this. However, I would never take that away from them by saying how different my life is. So I just don’t say much at all.

Sometimes I see blogs for parents who have “normal” children, and I see their struggles as we all have them, and sometimes it gets a bit much because some of those things that are being complained about I have never had to experience and never will. But I have noticed in recent times these feelings and thoughts have slowly disappeared, and I am not being triggered because I am working through my traumas which is helping me understand why these blogs/comments/ would make me upset. It has taken me a long time to get where I am today without feeling left out or secluded because I have a son with a disability and I have had a lot of different friend circles. I think once you find your tribe, you no longer will feel that way because they will love you unconditionally and make you always feel welcome. This doesn’t happen overnight, but I promise you this if you can sit with yourself and understand that everything you feel is valid and the way people treat you has nothing to do with you or your family, and everything to do with the way they feel you will come to find that you will be much happier with life and everyone around you.

Fun things we enjoy doing together
Most mornings, we both are up early during the warmer months, and we head down the beach, I piggyback Jimmy, and he copies the birds chirping, he knows where we are once we get to the sand, and while I go for a sunrise swim, Jimmy sits on the beach. He is always so happy listening to the sound of the ocean. We also love going for bike rides where he sits in his trailer and listens to all the sounds around him, giggling away as we ride around. He also has his own three-wheeled bike that I push and steer for him, while his little legs go around like a “normal” bike, but I am doing all the work. My favourite part is when we ride past people, and he is laughing, and others notice, look up at me, then back at Jimmy, and the smiles on their faces bring me so much joy. Jimmy also loves showers, and swimming much like me and loves anything to do with water. But with the ocean, he can be a bit unsure as it is unpredictable, and unless it’s calm, he can be quite nervous if I take him in the waves. He goes surfing for the disabled a couple of times a year, he takes a few times to get used to it, but once he knows he is safe, he will sign “more” to have another go with lots of “yays” and giggles. I used to piggyback Jimmy up a lot of mountains which he would really enjoy as well, but now he is a little heavier. I am finding it a bit harder, so we stick to easier things. Jimmy loves show rides, and even though he can’t see what is going on when I’m with him, and he feels safe, he will laugh and laugh with anything that’s fast or exciting. We fill our days with songs and lots of encouragement, and it’s what makes everything fun.

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.
Jimmy is a beautiful soul. He goes to bed laughing, and he wakes a laughing. Some days if I am not feeling the best, I’ll look at him, and he will be sitting there singing away or laughing. We laugh a lot in our home, which brings so much happiness. To be honest, sometimes I ask myself how can I be sad when I see Jimmy, my son who has never seen colours, clouds or rainbows and he is just sitting with a smile all the time. He gets excited when he hears my friends or his carers voices and gets up to give them big hugs. He has changed my life and made me realise that you don’t need everything in this world to be happy because when you are laughing, smiling or giggling, all you need is love. We are all unique, and that is what makes us beautiful and that is enough.

I am now truly happy with my life I wake up every day knowing I am who I am and that is my best possible version of myself.”I say this because I was 17 when I had Jimmy, and the day I found out about him being blind was the day I felt my heart break. The first few years of his life, I was trying my best but also, I was a bit of a mess. I was drinking out with friends a lot, and every time I would cry. I would say stuff like, why me, what did I do wrong. Though I loved Jimmy, I never wanted to feel that way, but I did and as hard as it is to admit that, I know now that was the truth. I was hurting, and it took a long time to overcome those feelings.

We all have traumas that we need to sit with and try to overcome; mine stem from a very young age right through to when Jimmy was born and being a young mum. It hasn’t been easy, and I’ve been a terrible person at different times in my life, but I have always managed to push through everything and ask myself why have I have done that or been like this.

I have forgiven myself for feeling like I wasn’t good enough and that I wasn’t doing my best even though I was at that time. I wake up knowing that Jimmy is happy, so I must have done something right.

Today and every day I choose me, I choose a life that I want to live and give Jimmy because we both deserve everything. I go to work knowing I have a job that I love. Jimmy goes to care with carers who love him like family. I have friends that support us. I can be alone without feeling lonely. All of these feelings come from love; when anything bad happens, I don’t focus on the bad I ask myself what can this teach me, what today’s lesson is, how can I change so this doesn’t happen again. Life is perfect exactly as it is, the good, the bad and even the ugly because that’s what will help you grow. It is when we grow we start to heal.

Society’s misconceptions about children with special needs:

I think people put disabled children/adults in a box and assume that they don’t know what is going on. Even though I use the word disability, I don’t like it. Because I believe we all have an ability in one way or another. Jimmy is who he is, and from a young age, doctors have said “he needs to be this or that” because he doesn’t fit in this category of height/weight/size/mental ability. But what I say who decided this who says your child has to be this or that. Why can’t they just be, be who they are without being put in a box and labelled? In saying this, I also believe there needs to be more support out there for all families because no one child is the same; we all have different abilities/disabilities. Look at each child as a whole and what specific needs each one need to have. There is no one box that you can tick for everyone.

What has having Jimmy taught me
When I was 19, I had a friends father say to me; your life will get harder. I was always worried about this, and there was a point a few years back where I thought it was harder. When your child is young, you don’t see the differences between others, but as they get older, you start to notice. I don’t like to say what Jimmy can’t do but rather focus on what he can do. I guess for me; I would say it’s not hard in the way people think it would be.

Even though he is still in nappies, I have to feed him and shower him and basically help him with everyday living skills. He is my little shining bright star the smiles I get and the laughter I hear makes everything worthwhile. He loves learning new skills, and though it might take a long time, our persistence pays off. Jimmy is always so proud of himself, and I’m always there cheering him on. We have our bad days, but they don’t outweigh our good ones.

From what I’ve shared, I hope parents will take away the following:

Understand that you are going to have so many feelings come and go some days are good other days are just terrible, but you get through this. It doesn’t happen overnight, and to be honest, it wasn’t until Jimmy was in his 20s when I really started to changes in myself and how I would deal with having an adult/child with a disability.
Take time for yourself, because if you are looking after yourself, you will be happier and that will reflect on to your family.

I had a doctor say to me when Jimmy was in the hospital at a very young age that I should take care of myself because he has seen too many families put their lives on hold and end up giving up after a while because they never looked after themselves. You mustn’t think that by putting yourself first that you aren’t a good parent; what you are really doing is not losing who you are and being a better parent for it. It’s harder to do this, than say, but don’t feel guilty taking time for you—don’t feel guilty for feeling any of your feelings. Life is a roller coaster, and we are meant to ride all those waves, the good ones and the bad ones, and each time you overcome one, you will get stronger, and it will get easier.

Just be unapologetically you, let your children be themselves. Find what you love and bring it into your family. Any obstacle you face, look at it from a different point of view. Not everything will be easy, but there is always a way you just have to trust yourself and step out of your comfort zone. Everything I have ever done with Jimmy, I always had to take that first step into the unknown, and every time, I have never looked back. We have travelled many places with friends and alone, and I have needed to put in the extra work to be able to do this, and all that work paid off. Trust yourself that you got this far and to be open to everything that comes your way, places, people, and life always works out if you allow it to flow, no resistance and always understand that what you do today has already shaped your tomorrow.