We were encouraged to wear odd socks yesterday, in support of World Downs Syndrome Day. The socks were celebrating difference, the same but different and I loved the displays of quirkiness that I saw on social media. I especially loved a t-shirt that I saw worn which said ” Calm down – its only an extra chromosome” which made me smile too, especially given the beam that the model was also wearing.
It is the only disability that I am aware of that is routinely screened for during pregnancy and I know that the test itself carries with it a high risk of miscarriage. I do not recall now whether or not I was offered the Amiocentesis test but I probably was as a 34 year old mum-to-be. But it begs the important, but hypothetical, question as to if I had been found to be carrying a baby who had a high likelihood that he would have Downs Syndrome, what action would I have taken. Indeed, if I had know that Joshua would have been born with cerebral palsy and epilepsy, would we have allowed the pregnancy to continue?
It is an emotional question as clearly Joshua is here now, he is a big part of our family and it is almost impossible to imagine my life without him in it. The difficulty would have been that the Doctors would have found it impossible to have known for sure the extent of his disability from any test, as they could not tell us that even once he had arrived and had had his MRI scan. We were warned that he may not see, hear, walk or talk but were advised to “take him home and treat him like a normal baby and wait and see”, which is what we did and he defied all of those odds to varying degrees. Might it have helped to have known during pregnancy that he was coming with complications?… I don’t think so. I am aware of mothers who know that their babies will need corrective surgery as soon as they are born, which is a big burden to be carrying for so many months of pregnancy. While you might be able to prepare yourself for the shock, you would certainly be deprived of a carefree pregnancy, which I enjoyed.
We have had a difficult journey but now Joshua is in a place where I would say that he loves life, that he is happy and he spreads joy around him. Of course he has frustrations but show me a teenager who does not. There are many ways that Joshua is unable to achieve independence – he will never drive, live alone or go out with his peers unescorted – but to be honest, Joshua has never known anything different. He has always been cared for and so I do not think that he has aspirations towards independence in the main. Joshua shares his simple joy with those who are around him: he is amused by simple things, he gives hugs freely and he gains so much from the people who surround him, even strangers. He does not worry about the future – he leaves his parents to do that on his behalf – and he does not need to worry about money or working for a living, and so, in many ways, he leads a charmed life.
I do not know what the 34 year old mother to be might have done with the news that her son to be was going to have disabilities, but there is no doubt that this 52 year old mother is delighted to have Joshua in her life; the challenges that he brings are more than outweighed by the joy that he provides on a daily basis. So let’s celebrate and encourage difference in our population. It is not always an easy path to walk, having a child with a disability, but it is always a rewarding one and my eyes have been opened to so much by having Joshua in our life.