Another hour, another day, another night of lockdown completed. We have measured our time this way since Jack first started displaying odd and sometimes quite frightening behaviour from about six weeks old and we were told to expect to say goodbye soon. It means that you can live in that moment and enjoy the here and now when the future is not what you were expecting.
Actually, living in ‘uncertain times’ has been part our normal for the past 5 years, as Jack has a condition so rare that it took an army of doctors, scientists and some space age gene technology over 4 years to diagnose that he has Aicardi-Goutières Syndrome.
I know what you are thinking “I’ve never heard of that one”, and unnervingly not many doctors have either. Until you understand that this disease only affects about 1 in 100,000, and there are more than 7,000 different rare diseases that have been identified – plus an unknown number of unidentified, or syndromes without a name. Although an individual disease may be rare (affecting less than 1 in 2,000 people) around 3.5 million people in the UK are living with a rare disease which can be chronic, life threatening and isolating. About a third of children living with a rare disease are not expected to live past their 5th birthday, so you can understand why so many families live in short time frames and try not think too far ahead into the future.
Living in isolation or being restricted in where we can go is part of our normal life too. We are lucky to have a big van that is modified to transport Jack in his wheelchair but that comes with its own additional extras that need to be considered before we venture out. Anywhere we go needs to be researched to find out if there are height restrictions for parking, big parking bays (parking sensors only help so much), are there any steps from the van to the front door and inside wherever we go, what are the changing facilities like? It’s a reason why we are thrilled to be supported by Reuben’s Retreat and why I’m quite giddy about the new wing opening up because I know that I won’t have to worry about any of those things.
I also know that there is a group of fabulous people that I have met through Reuben’s Retreat that know and understand our trials but they also (and much more importantly) understand how we celebrate and enjoy our kids, their quirks and quips. Reuben’s Retreat has been instrumental in keeping us all in touch through online coffee mornings, quizzes and even a story and singalong with Alice in Wonderland! They have also been checking in on each of us to make sure we have everything we need, from a bag of flour or helping us get a regular delivery slots to giving us exercises that help maintain our mental health too.
What I think I’m trying to say is that we may be living in uncertain times, but some are more uncertain than others so try not to think too far ahead at what may or may not come to pass. Have a go at living, experiencing, and enjoying what you have right here, right now.
Jack, mum Tina and their family are supported by Reuben’s Retreat in Derbyshire, a charity that was born in memory of Reuben Michael Graham who tragically passed away in August 2012, aged just 23 months.