There are many wonderful things about being a parent, but I am under no illusion - it is one of the hardest jobs any of us parents will ever undertake. Add into that parenting mix, a child with a disability and your parenting gets catapulted to a whole new level!
As a young Mum to three little boys, I was very excited when my girl was finally born. Firstly it meant I was not going to do the pregnancy thing again, and secondly it meant I got to be a 'girl-Mum' as well as a 'boy-Mum.' What a beautiful gift! I was beyond happy with my little family.
Being child number four, it soon became clear to me that something was not quite right with my little lady, and so began the journey into this new normal world of being Mum to three little boys and a disabled daughter.
It was an intense time, of doctors, early intervention, hospitals, medications, watching her every move, celebrating every tiny achievement that made me hope things would be 'normal' and soon my whole world was consumed with trying to work out what her diagnosis was, how did this happen? How do I help this little person live safely, be healthy, be loved and cared for in the way she needed? All at the same time as being Mum to three little boys and meeting their needs. I kept going like a freight train! Kept doing what needed done for my family, continually thinking about the future and how that would pan out for us all.
Hindsight is always 20/20 and I would say that right there the first big crack was appearing unbeknown to me. In fact, it was so far off my radar there was no way I could have seen it, as my sole focus was what needed to be done for my family, my boys and especially my girl - because she was the one who had the highest care needs and I wanted to protect her.
I paid absolutely no attention to my own health, mental health and emotional needs. I avoided looking at the grief I needed to process around having a disabled child and it being my only daughter and my absolute dread of what the future held. It was so easy to keep busy with four children aged 7, 6, 3 and 2 and working a part-time job, to push my needs aside - after all that's what 'a good mother does!'
Time marched on, life happened, my marriage disintegrated, I relocated back to Australia with my youngest two, my older boys had moved out, their Dad worked overseas, I got full-time work and in all of this chaos called life, I was caring for and supporting my daughter alone, navigating her changing behaviours and her disability, getting her into new schools/service providers/new home, selling and buying houses at the same time as trying to keep fit, find a job that I loved enough to make into a career and, God forbid, have a social life!!
I suffered anxiety and panic attacks all the time but kept it hidden, I actually used to drive to work in the morning, shaking and crying to one of my jobs; after getting my girl up, fed, dressed and out the door. I could feel my energy draining and my mental health failing, but I just kept going while those cracks kept spreading.
It got to a point where I knew I needed help, but the only family I had in town was my boys and I was continually asking for their support. Their Dad was still working overseas and he would say, "the boys will help you" or "get the boys to do that" etc. It's normal to do that I know, but when they are young men who need to be living their own lives, that pressure to support me was immense and was the final crack that caused the earthquake that nearly ruined the family dynamic that I held so dear to my heart.
In 2013 I had a heart incident and was rushed to hospital in the middle of the night while my angel was sound asleep in bed. I had to call my oldest son to come down to my place - luckily he answered his phone immediately, which was odd as it was 1.30 a.m. on a week night. The ambulance was in the driveway with me strapped in, with all monitors on me and we could go nowhere because there was nobody in the house to look after my daughter. For me this was an almighty wake-up call. I could have died. My girl could have been in the house on her own and there was no way she was able to contact anyone to help her. Something had to change. The sad thing is that at this point in time our family dynamic was extremely strained. My boys didn't like me, they felt all I did was ask them for help - which was true! The cracks were massive.
This was a pivotal moment in our family's life and so I called a meeting a few months after I was out of hospital to discuss what, for me, was an extremely heart breaking situation. Everything that I had given all my life for was crumbling round about me and I did not want to lose my family. My boys did not know how much I loved them, they thought because all I ever did was talk about my daughter and her need for help and support, that I was not interested or cared about them and their lives. Of course that was the furthest thing from the truth, as I was just single handedly doing what needed to be done for their sister, but I had to step back and look at things from their point of view and I could see why they would think that.
Being completely honest it was one of the saddest moments in my life to think that my boys didn't know that I loved them as much as I loved their sister. This is a crack that you need to pre-empt. This is what I didn't do well in my parenting journey. I don't give myself a hard time about it as I know I was only doing my best, but it is a crack that can be avoided if you recognise it early enough. However, in trying to fix this crack I did go to the other extreme in trying not to put pressure on my boys in any way shape or form and backed off from calling them, or asking them to be in touch with me for fear of making them feel any pressure. It is
The old saying that prevention is better than cure is so true in this circumstance. If you as a parent can recognise the cracks as they start to appear it might mean that you won't have to go down the road I did.
Look out for exhaustion, agitation, anxiety, crankiness, impatience, resentment, declining health, fragile mental health, feeling overwhelmed, unsupported, feeling alone, recognising you never get a break just for you without having to organise everyone round about you to look after your disabled family member, fractured family relationships and the list goes on.
Make sure you push the stop button. Call a crisis family meeting with a mediator there. Reach out to someone like me who has lived experience of this hardest of times and who will never judge you or what you are going through. You are doing the best you can. Know that carers need to be cared for or those cracks will become cavernous and swallow families up in a maelstrom of brokenness that ultimately leaves the person with disability in an entirely vulnerable space that nobody wants.
My family and I have come out the other side of all that messiness. I am not sure if we have come out of it totally unscathed, but it is now 100 percent better than it was and I have managed to put things in place around my daughter and her living circumstance that allows our family dynamic to be somewhat normalised and where we live in relative peace -even knowing her care will be never-ending.
As for today when cracks appear ?? I don't shut up and hide! I reach out and gratefully receive offers of help to smooth over those cracks so I can get back to living my life for me.
My email is karen.140@gmail.com and if you need to reach out, please don't hesitate to contact me.
