Ireland is not used to extreme weather fronts. The last number of days as we embraced the wrath of the biggest snowstorm since 1982 we all found ourselves stranded and well out of our comfort zone! People could not leave their homes, store shelves were empty, cars were stranded, water pipes frozen and the news was filled with stories of kindness, bravery and craziness. There were farmers in tractors retrieving ambulances, neighbours in 4x4s delivering brides to weddings and neighbours to hospitals, an unprecedented demand for white bread, locals skiing down their main street and countrywide competitions for the tallest and most impressive snowmen!
I found it a difficult few days. Roland was stranded in Munich, unable to get home and as the local kids screamed with delight sliding down snowy hills, building snowmen and making snow angels, Noah sat alone at home making Play-doh pasta and playing with his train set. I watched Anna scream with delight kitted out in her super cute snow gear and I could hear the kids laughter outside. I was so thrilled for her and all her friends, the rare excitement of snow covered and traffic free streets was pure joy. At the same time, I had a knot in my stomach as I watched Noah playing alone inside. I felt lonely for both myself and him. I wished he was outside with the others, his belly laugh as he too slides down hills and making footprints in the snow. I wished he was with the other kids, fitting in and being part of the group. We made many attempts to go outside but as I tried to force him into his woolly hat and out the door, he was getting upset and wanted nothing to do with it.
Of course, I want to think that the knot in my tummy was for him. But I also realise that this now familiar knot is often more for myself then it is for him.
Noah makes no apologies for who he is or for what he likes. He is not sad that all the other kids are out enjoying the snow while he is inside. He doesn’t want to be cold and wet and surrounded by screaming kids. He doesn’t want to try and trudge through the deep snow using every muscle he has in his body. He is very happy to be inside, cosy and warm in his favourite zone, getting a few days off school, helping mum in the kitchen and playing with Woody and our two dogs.
I have to learn to accept that I should not try to mould Noah so much. It is my role to support him and help him to achieve those milestones that benefit him in his life. Not to try to make him the same as everybody else.
Noah works hard every day to fit into so called “mainstream” life and with huge respect to him, he plays his part like a pro. He conforms in his own time to the milestones we set for him and delights when we reward him for achieving it. But surely he is entitled to feel this delight and sense of achievement for being himself too. If Anna shows any sign of individuality, we applaud her and congratulate her on her self confidence, her creativity while Noah is getting rewarded for proving he is the same as everybody else.
But he is not the same as everybody else. I regularly have to pull myself back and remember that this is not only OK, it is something to be celebrated. Maybe he is the one who has it all figured out. He genuinely does not care if you approve of his quirks or in fact what you think of him at all. He is confident, loving, a great friend and happy to be himself. He will never ask you to conform to what he wants to do, he would love to have you with him but he is also happy to do it himself. He is not afraid of his own company.
Of course this is not only about a little boy staying inside from the snow. It is an example of Noah choosing a route that may not be the same as the other kids choose and doing things his own way and in his own time. It may look lonely at times but he is choosing to be an individual, he is confident to be himself and he is not afraid to stand out from the crowd.
Raising a child with Down Syndrome is a daily learning curve. I write so much about the love story I have with my little boy but it is also very hard at times. There is never ending patience, acceptance and love required and I fall down at times. I get tired. I live with the guilt that I might not be doing enough, that if I don’t get it right I might break something. That if I miss a therapy session or opportunity to learn a new word, life may never be the same. That I might not be a good enough teacher. I feel guilty that I would prefer to have a glass of wine and watch Friends then to sit down and play another educational board game. I have that knot in my stomach when we are in a situation where he might stand out, let himself down or not receive the respect he deserves. I have an impressive ability to be overdramatic and while I seem to have it all together, the inside of my head is sometimes exhausted!
But the biggest learning on this incredible parenting journey is acceptance. Love comes easily but we are not naturally good at accepting people for who they really are. I don’t know why we all obsess so much about what is normal, we love conformity and heaven forbid we might stand out. Normal is quite frankly boring and un-inspiring. I think we all have something to learn from this confident and inspiring little boy. He is unapologetically himself and as his adoring biggest fan, I will demand it from myself to not only respect him for who he wants to be but to applaud him for it.