A weekend of celebrating our children – and making wonderful friends
Jenson has a rare genetic condition called tetrasomy 18p, of which there are only a few hundred cases recorded in the world. He has extra genetic material on his 18th chromosome, and Matt and I believe this makes him extra special, or ‘tetra special’ as we like to fondly say.
It has been a lonely, tiresome and testing two and a half years. Where doctors and therapists look at us blankly, and search Google as we sit in front of them, we explain, instruct and lead Jenson’s care pathway.
How are we able to do this? Through our amazing ‘tetra’ family. We have built up a wonderful network of families with whom we share, advise, celebrate and cry. By lending support and sharing experiences we are all able to guide our children’s lives so that they have the health care, education and support that they deserve. We are united in providing each other with a platform for sharing emotionally, clinically and practically what we simply cannot get from clinicians, professionals, and quite frankly, sometimes even our own friends and family.
Rewind one year: Last July, Matt, Jenson and I attended the Chromosome 18 European conference in Manchester. It was an emotional and defining time for us, Jenson being only 19 months old and his diagnosis only coming six months prior. We had been very worried about thrusting ourselves into the realities and truths of a gaggle of little faces that would basically represent Jenson’s future. Their behaviour, their physical afflictions, their abilities, or lack of. Up until then, having never met a real family with a real child with this really rare condition, we were still living in a world of theory and abstract. And dare I say, to some extent in a world of denial. All our worries were dispelled immediately. Everyone was amazing; we made some wonderful friends and met some inspirational children.
At the time we were very sad that we would not see our new tetra family for another two years, this being a biennial event. So Matt and I decided to host our own event this summer, which took place this past weekend. We had 25 adults and 17 children visit our hometown in the south of England, with families travelling as far as 300 miles, and six hours on the train.
There were some families who were in the same shoes as us 12 months’ ago; they had never met another child with this condition. It was wonderful to watch them experiencing the same raw emotions that we had 12 months ago, which I remember describing at the time as like being reunited with long lost family that you’ve known all your life but never met. Where trepidation turns to elation and doubt turns to hope.
We all have wonderful support networks in our everyday lives: families, friends, consultants, therapists, school teachers, caregivers. But it is impossible to describe the unique and deep-routed support given to each other throughout our tetra family. We listened, we reassured, we counselled, in the things that no doctor or clinician could even begin to understand.
And goodness me did we laugh!
I can honestly say that I have never met a group of such contented, unassuming and beautiful children. For every little tear that was shed there were a hundred smiles, giggles and cuddles. The sharing of toys, hugs and laughter was touching and inspiring.
As for the children’s siblings, the silent, selfless sufferers of our children’s condition, they played together like best friends and understood perfectly the magnitude of the event. Not a tantrum in sight, the parents of these children should be immensely proud of these well-adjusted and self-sacrificing little soldiers.
For 48 hours we were transported to a place where we were the normal ones, looking out on the rest of the world. We were insulated from reality, with no judgements, no expectations, and no societal standards. It was the most refreshing feeling.
Our children will always be paramount in our lives; indeed that is why we arranged this weekend and why so many families chose to come along. But what came as a lovely surprise was the solidarity and cohesion between the parents and grandparents. We were all there for our children but what we all soon realised was how much value we could add by all being there for one another.
I remember from the conference last year feeling so much strength and conviction from my new family; impossible to translate into words, but like our togetherness had given us a new lease of life. This weekend galvanised those feelings and I have grown even closer to my tetra family and have come away with an even greater level of inspiration and hope for the future.
Before this weekend some of us felt as if we were pursuing an unrelenting uphill journey against the elements. Well, for a few days we had a reprieve on flat terrain, a vacation into a utopian place of understanding, laughter and love.
We parted with smiles on our faces, tears in our eyes and promises to stay close, forever.