MY UNIQUE SON JACK
From a little girl I loved playing babies with my dolls and it all seemed so simple and easy in my childlike mind. I thought that the way it would be but by the time my first child Jack was born I soon realized life was never going to be that easy. Although Jack had delicate features like a doll thats where the similarity ended. When Jack became a toddler, it became more than apparent to me and my husband Paul that Jack wasn't taking the same path as we saw our friend's children take. I didn't hear them crying out in torture when you knocked over their toys, but Jack would take hours to calm down if I just knocked one of his perfectly lined color coded cars out of place. Just to leave the house became the ultimate challenge as he would frantically look for trinkets to stuff in his pockets. I lost count how many appointment it made us late for. Every daily event created its' own personal battles to complete, days out, education even just to get to school was full of rituals and routines such as shutting people's gates. I cursed those forgetful people under my breath for having to constantly pull him away before he set car alarms off out of desperation to touch their badges. Not such an easy task when you're pregnant carrying twins.
ALONG CAME THE TWINS
Eventually answers came in the form of a High Functioning Autism diagnosis and so did my twin girls, Shannon and Stacey. One sibling would of been enough for my lad to get used to but two sisters was a total adjustment. It certainly put any routine established out of sync completely. The diagnosis was a blessing even if some would class it as a label, it certainly helped me get more support and recognition that my lad wasn't an out of control brat, but a child struggling to make sense of the world around him. We looked at this as a small part of Jack but not all of him was so much more unique and perfect in his own way. Like any parents dealing with a child with additional needs, it felt like sailing a ship on stormy seas some waves came and you cling on and hope to stay afloat while others totally brought you crashing down. It certainly felt like that when the oldest twin (by seven minutes) Shannon, ended up with two diagnosis at such a young age because she was crushed in the womb. It was discovered that she had Mild Spastic Diplegia Cerebral Palsy in her feet, but special shoes certainly helped her deal with that. After six months, she started to deteriorate drastically in her first year of primary school. Many symptoms like flu, exhaustion, severe sickness, headaches, fevers- you name it, seemed to develop to our horror. Our lives were filled with hospital visits, countless tests & MRI's as we searched for desperate answers. Those answers didn't come for years. I felt like I was just banging my head on a wall trying to get listened to and prove how sick she was when the test revealed nothing. The idea of the perfect mum had worn off so much through my journey with my children although I felt a lot of guilt. What did I do wrong? Why my children? Have I failed them? It all circled my mind to taunt me. Finally Shannon was diagnosed with M.E. Myalgic Encephalomyelitis. I thought we could get all the help needed now, but after being told apart from pacing this illness is so mysterious with no known cause and cure . We were literally on our own knowing that any energy used in her body would drain quickly and result in her having all those symptoms back again, which resulted in a relapse. Daily life was a battle and education was becoming impossible. With her twin sister, Stacey, terrified what was happening to her twin and Jack struggling with the world around him. Family life felt very bleak indeed as the light at the end of the tunnel seemed in the distant.
We battled with two children with two totally different diagnosis and one child who felt like she was the odd one out because she didn't have any special needs. Our situation presented so many issues in our daily life. One child needed peace and serenity to stay well while the other was also needing to be active and loud because his brain couldn't slow down. I needed to find my own sanity among all this so I could turn something positive of all the negativity we have been through. I created a group on social media called "Campaign For Disability Awareness." It was a site where I could raise awareness and help others who may be on a similar journey to me. The site grew in many ways and resulted in me attending events and running workshops to educate people on disability awareness, especially relying on my own personal experiences with my children. I wanted to raise awareness in a unique way to help people create memories and have fun while learning the best way to achieve this. In the workshops people would take part in cognitive and physical challenges while using a variety of disability aids, visual impairment glasses, hand & arm adaptions, neck braces, etc. All this helped give insight into disabilities. The activities were child like games & sports. Adults as well as children enjoyed the experience but felt empathy too. It was a winning formula and I had been lucky to work with so many incredible organizations along the way.
NOT PLAIN SAILING
I think I've finally reached a place where I'm fully aware that nothing is going to go smoothly no matter how much I wish for an easy life that is not the path my family is on. It's more important to concentrate on the good days or the days we will think of special memories to help us get through the bad days. Enjoy the moment because no matter how small it may seem it's the little things in life that counts more then the times sitting indoors watching my daughter weakening everyday feeling so helpless and alone . None of the big things matters. All that matters was being able to sit outside in the sun and take her to school. All the things others can take for granted were becoming fading dreams to us. Looking back at bringing up the children, could I have tried harder to be the perfect mum, whoever she is? Should I have pushed more for perfection? I believe no. It would of just made my life unbearable striving for something that was out of reach while valuable time and memories would have been lost. Memories of pretending to stomp along the street to stop my son feeling anxious, silly dances and voices to take my daughter's mind off her pain. To me I achieved my level of perfect mum because it got us through our journey.