It has been three years since Jago’s accident and I almost cannot believe that my baby is now four. Although we walk a rocky road Jago has been calmer and life has been slightly better for him and all of us. He now can access a special nursery every day and participate in his own way, in life.
The last year has had many challenges but the biggest one has been around the subject of “acceptance”. I always thought that when people spoke of this subject it would be something that I decided to do. But instead it’s something that just happens, in my case in a very emotional and terrifying way.
You see I’ve been living on the edge for all this time, fighting my way through all the challenges and being driven by grief and anger, the fight is what kept me strong. At the beginning of the year something changed and I found I was exhausted, so extraordinarily tired and sad that I just couldn’t do very much… but feel sad. The tears just flowed and didn’t know how to stop them.
I know now that this was my first step into accepting that my beautiful, perfect boy would not come back and that this lovely boy that I hold so tightly every day will be here to stay. The fight was over. It was time to move on and just manage each day as it came, to start looking in at my family and not out to find a solution…clinging to anything that might help. The inner me just said “STOP”.
So I did…
Although hard to accept, this change brought with it a relief and a new strength to start living as me again, having a life…and not just pretending to have one. Before my fears were locked inside but now I can verbalise them…not easily…but I can. My inner soul is no longer locked away and I feel strong enough to face the world and try to make changes for others.
So I began to focus on creating a new resource website for parents like me. An inspiring web-based lifestyle resource, designed to support and which will bring people and their ideas together. The idea is to offer a well-run, contemporary virtual place for those enduring the stress of dealing with the tragedy of a severe brain injury in the family. We believe this will encourage people that would normally shy from such resources to join forces and help others create a stronger voice and share vital information, perhaps sometimes otherwise well out of the reach of the average family.
There are no UK based websites currently out there that effectively bring together all the important issues that surround these types of injuries and present them in a positive, contemporary and powerful context whilst also offering expert and evidence-based support with real-world guidance on how to survive this world that any family can suddenly find themselves in.
The website will be the first of its kind to offer support & information on the broadest range of subjects such as medical issues, nutrition, therapies, disability & family rights, holiday advice, suggestions & offers, clothing, important funding advice, equipment etc. We aim to select the ‘best of the best’ and condense them, then present them in an inspiring and uplifting lifestyle website.
With a magazine feel and blog format it will bring constantly updated weekly Top Tips, inspiring stories, relevant current affairs and breaking science stories and allow parents to discuss these within a fully moderated forum.
It will also act as a pathway to all of those wonderful charities and support groups already well established but perhaps remain unknown to many parents, particularly those recently facing these new and alien challenges.
Thank you for your on-going support and look out for the launch of Brainstars!