Once upon a time we were drifting through our happy, ‘typical’ lives, all spread out across the country, never for our paths to become intertwined.
Then, along came Mother Nature with a pregnancy, and into that pregnancy she kindly dished out an extra pair of chromosomes. Our babies were born, and therein began our journey into our special world of friendship and discovery.
The next few months would include some very dark, sad, and overwhelming moments. Times of frustration, deep sadness and desperation. The feeling that we were alone, watching the others, that used to include us, going about their seemingly easy and relaxed lives, with their neuro-typical children.
Then, one-by-one, in our own time, we decided to look for help by way of social media. We joined Facebook groups: Tetrasomy 18p created by an aunty in New Zealand, and the official Chromosome 18 Registry & Research Society group. The fog started to lift, as the existence of other families, just like us, was unveiled.
I trudged through these groups, desperately seeking out any members that were also in the UK, and it became apparent that there were a handful of families. While doing this, a message popped up from my now dear friend Jessica, welcoming me to the group, and offering some beautifully heartfelt words. The exact words that I really needed to hear right there and then. Since then, I would like to think that I have paid that gesture forward to several other families, who at a later time were going through the exact same anguish, and who now, are also very good friends.
It was apparent to me that Jess, myself and the other parents that I had connected with, could really benefit from a UK-based Facebook group. So that’s what I undertook to create.
My primary reason for starting the group was for practical purposes; so that UK families had a place to discuss topics that were specific to the UK. For example, how to navigate our NHS for therapies and equipment, discussions around childcare and education, and the social care and benefits systems.
However, I did not anticipate just how quickly this group would grow and flourish. Before long, we were sharing our anxieties, celebrating our triumphs, confiding in each other with our concerns, posting pictures and videos and bouncing around ideas.
Friendships were born and were growing at an exponential rate. Even the dads and grandparents were getting involved!
At this point, only a handful of us had met up, through the previous European conferences, but in the main, we existed as ‘virtual friends’. It was evident to me that we needed to arrange to get everyone together.
Six months later in the height of summer 2015, my husband and I hosted our inaugural ‘Tetra Get-Together’ at our home in Christchurch, Dorset. Seven families came from all across the UK.
We had an absolutely wonderful weekend of fun, barbeques, beach, surfing and sunshine. You can read the blog I wrote after this event, here: https://tetraspecial.com/2015/08/05/we-are-family/
This was the advent of our new-found friendships, from virtual friends into the world of real-life.
Skipping forward two years, I have lost count of the number of times we have met up with our dear friends. Holidays to Devon, six-hour road trips between Harrogate and Bournemouth, Christmas concerts at the theatre, weekends in Bristol, trips to visit new-born brothers and sisters, a charity half-marathon in aid of Chromosome 18, and of course most recently, an amazing group get-together in Croydon which hosted in excess of 80 people!
I have been asked by the Chromosome 18 registry to blog about the ‘blueprint’ that has made our group so successful. I really cannot put my finger on why, or how, our Facebook group became so much more than a Facebook group.
One thing is for sure, we put our children at the heart of everything we do, and we celebrate each other like family. We cherish achievements and lament the losses, we confide like the closest of friends and we harbour no envy, judgement or prejudice.
When we meet up, I find myself feeling so relaxed and at ease, relinquishing those usual concerns about the pressures and judgements we are exposed to in our regular lives. We are the centre of our own universe; we are the typical ones. We need show no embarrassment or shame, where real life would impose it on us.
Is it luck or coincidence, or something more metaphysical, that resulted in us all being so like-minded, and such kindred spirits? And that goes for the dads too; their interests, senses of humour, and characters are uncannily compatible.
We have regular FaceTime calls so that the children can laugh, chat and show each other new skills. We have WhatsApp groups for regular contact, we send birthday gifts in the post and even ‘thinking of you’ gifts at sad times. We always have a meet-up in the planning; right now we are hatching our plans for a long-weekend in London for the Singing Hands Christmas concert. Last month we had our wonderful friends from Harrogate visit us in Christchurch for a week, and we shared some wonderful days out and made life-long memories.
Life before Tetrasomy 18p is a distant memory, and if I ever find myself answering the theoretical concept of ‘if I could take away Jenson’s t18p’ my initial and overriding reaction is one of horror, that I would lose these friends, and Jenson would lose his best buddies.
Where some of our old friends have dwindled and deserted, our friendships have grown and galvanised. We have taken residence deep in each other’s hearts.
I would class the friends I have made through Jenson’s rare genetic disorder among some of the very best friends I have ever had. It’s a bizarre thing really, the way that fate determined a group of people’s paths to cross, who would otherwise never have met.