“I’m sorry about him.” My wife and I heard this mother say numerous times. We were waiting in line at the shop. The lady’s son had started talking to us and asking us questions. We noticed this made the mother uncomfortable which lead to her making excuses for him, telling him several times to stop interrupting us. The young man was clearly interested in what my wife was purchasing. He turned to me and asked me several questions about what I was holding too. Again, his mother continued to apologise while telling him to stop.
Upon reflection, we have concluded that this year has been the most tumultuous and difficult for our princess and as such for us. We had high hopes for her first year of high school, a timetabled and predictable space, others in her class with similar struggles and specialists that could walk alongside her.
Our dreams of independence, a life away from mum and dad, a career, family and life long friends seem unattainable, and that's gut-wrenching, painful. A scary future that each day I try and push away refusing to accept and I continue to help her dream, push her farther and again try a new strategy to get through a somewhat typical predictable day.
Pre-diagnosis a few year's ago we needed to make a decision. Do we go on waiting lists, accept the initial diagnosis and carry on, or do we go "private"
Next became a bigger problem... the constant in Jenna's life the past 6 years has been a school. School, for the most part, has been predictable, structured and problem free. In what seemed overnight we went from going to school daily, to non-attendance
To say "Its been a tough holiday period for the princess" would be an understatement.The normality of school, bedtime, packed lunches and her gymnastic lessons create a rhythmic stability for her
It's easy to teach, discipline and model the correct and expected behavior for our own family. Although we have been really taken a hit this past few weeks from others (mostly complete strangers.)
Getting it wrong for the past 5 years I asked myself these questions:
Did that lesson my abilities as a Dad?
I missed the signs for Jen, what else have I missed?
What did I do wrong?
Why did I miss all the signals?
I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers.