Last weekend I had an exceptionally rare two days of respite where I was without either of my sons. I drove up to Carlingford, checked into a lovely little airbnb cottage, and took the opportunity to contemplate life. As a result of a few hard come by realisations – or maybe they were actually well timed reminders? – I came away having made some important decisions.
The time to refocus.
One of the most pivotal realisations was, of course, about my precious Brendan Bjorn. He is now over 3 weeks bedridden, again, due to a pressure sore re-opening. He has been in school ONE day since this school year started. Last month, he had a frightening episode of unconsciousness for the first time in his 13 years, which the best educated guess from the neurology team is that he was in nonconvulsive status epilepticus. To say it is a worrisome development is an understatement. He has yet another urinary tract infection. And, he will be undergoing a spinal fusion in the hopefully near future, which for him will require many weeks of recovery time. So as I sat in this homely cottage listening to the soothing sounds of the rain falling on the rooftop, I realised…and even more painful, I accepted…that school is no longer a priority for him. It probably never will be again. Yes, he will be enrolled in school, and if he is well enough to attend even 3 partial days per week, I will find that a tremendous achievement. What matters most now is his health, his comfort, his safety and his happiness in having the best quality of life possible.
Declan, my little boy who is growing up far too fast with life’s numerous challenges, needs a forever home, a place to call his hometown, and with that, the security which will see him grow into a confident, stable young man. He needs the opportunity to thrive, and he deserves nothing less.
Then there is me. As I did during the few days when I went on my own to Norway in 2015, this past weekend away I remembered Tracy – the creative, active, outdoor-loving and spiritually centred woman who is more than solely a mother and a full time carer to her severely disabled son. I was reminded of what I need in order to be at my best, and being at my best is vital if I am to provide everything that my two beautiful boys deserve and require for their individual life paths.
The time for change.
I have decided the boys and I will not be returning to Kilkenny. We will return to County Louth, where I first lived when I moved to Ireland more than two decades ago. My dearest friends, including Declan’s Godmother, are there. We will be closer to Dublin for all of Brendan’s medical services. Declan will be closer to those he considers family. There are many reasons for this decision, a number of which are too esoteric to explain.
As I walked along the 8km greenway between Carlingford and Omeath, the water to one side and the mountains to the other, I felt that holistic sense of peace that comes when I am in such an environment. Simply put, it’s where I need to again return, but this time, it will be for good.
I had the time to refocus.
Now it is the time for change.