Rewind 365 days and where were we?
We were confined to a hospital cubicle with a 10 and a half week old, medically fragile tiny human who had already stared death in the face more times that I’d care to imagine.
We’d spent all but nine days of those 10 and a half weeks in hospital.
I was miserable, I was mentally suffering with the effects of what happened to Jaxon at birth, I was struggling to bond with this beautiful boy I’d helped to create.
I was tired. I was scared.
I looked at Jaxon and I felt nothing but overwhelming sadness, guilt and pain.
I had no idea how I’d ever be able to adjust to a world with a child who had a life limiting prognosis when I’d spent so long simply preparing myself for the difficulties of dealing with sleep deprivation and breast feeding.
Little did I know the grand scale of adjusting that I’d have to do.
I wasn’t sure I’d survive. In all honesty I’ve had more meltdowns than I’ve had hot dinners this past year and that’s not an exaggeration.
I’ve been close to throwing in the towel on numerous occasions because I felt like I wasn’t good enough or that Jaxon would be better with a family more equipped and more prepared to deal with his complex needs.
A family who chose to take on this painful yet rewarding challenge perhaps could give Jaxon everything that he needs and so much more.
Despite these intrusive and painful thoughts, with the love and support of those closest to me I persevered.
It’s been a turbulent year of hospital stays, new diagnoses, surgery, chest infections, missed milestones, heartache and emotional torment.
But amongst the lows, I’ve learned such fierce love on a scale that at times it frightens me. I’ve accepted that what I planned for may never be and I’ve learned to appreciate and more importantly, love the child I have because he is the true definition of a miracle.
Especially given that on paper, he shouldn’t be here, not with everything he’s faced since his arrival 14 months ago.
I’ve become so passionate about raising awareness of children like Jaxon.
I advocate for Jaxon like no other, shouting and screaming until I’m blue in the face trying to access services that he needs to give him the best quality of life possible.
It’s tough going at times and I’ve hit many a brick wall along the way, but for the boy that never gave up on life, I must continue no matter how difficult it all seems.
So as we step into a new year and a new decade how do I feel?
I feel fear.
Not the crippling fear that I felt a year ago.
That was a combination of new mum fear with the added medical challenges that we face that were still all so new and so very raw.
I’m more in control of that now, I’m slowly but surely becoming an expert in all of Jaxon’s medical needs.
I don’t feel intimidated when we have to go to hospital, I believe instead the nurses and doctors trust my instincts first and foremost, after all, nobody knows Jaxon like I do.
But I fear that Jaxon has so many uphill battles yet to climb.
I fear that he’ll suffer so much through his life and I fear that his life could be cut short because of his medical complexity. Jaxon is living with uncontrolled epilepsy, Infantile Spasms.
That on its own comes with a whole bucket of fear.
So as 2020 begins, I’ll try to deal with the fear as best I can.
I’ll try to enjoy the happy times more. I’ll try to put the fear away in a box and live each day to the fullest that I possibly can.
If not for me, for Jaxon.
Happy New Year