It’s hard because you are different. There’s still so much you can’t do that we have to help you with.
It’s easy because you’re unique. We have no formula to follow, or a list of known symptoms to worry about. We can make it up as we go along and adapt to what you need.
It’s hard because we worry about the future, of what might be and what you might need as you get older.
It’s easy because of your smile, your hugs, your laughter. It’s easy because you live each day at a time, without a care or a worry, and so remind us to do the same.
It’s hard because every form the government produces, every bit of paperwork and documentation they require, means hours of work, and focussing on what you don’t do well and what you can’t yet achieve, when we know you are so much more than what we are forced to write in black and white.
It’s easy because our wonderful friends and family accept you as you are without hesitation, and play with you and make you laugh.
It’s hard because sometimes I feel like the only one.
It’s easy because the NHS provides experts who check and advise and support – all for free.
It’s hard because sometimes we just want to be left alone, without the tick charts or the milestones.
It’s easy because you have just the right Daddy, to be patient and calm and accepting. And just the right Mummy to take it all on and fight for everything you need. And just the right parents, who love you above everything else in the world.
It’s hard because sometimes I can’t help but compare. And wonder what might have been if…
It’s easy because every day we go out and have fun – and you chatter and you laugh and you go to bed happy.
It’s easy because the people around me care, ask questions and listen. And tell me what a wonderful little boy you are.
Because you are. My beautiful little boy. Unique, funny, healthy, happy – and perfect. Despite what your chromosomes say.