“When I was younger I wish I’d known that what often seemed to be the ‘end of the world’ often turned out to be a positive and transformative experience!” A quote from Annie Lennox that I read two years ago and sums up how I feel about a lot of things!
I haven’t written for a while. The primary reason being that I have committed to only writing when I have something to say. The funny thing is that a few years ago when I was sure Down Syndrome was the end of my world, I thought I would have lots to say. Down Syndrome would be my constant companion, a topic I would think about and therefore talk about every day forever.
Of course there are plenty of highs and lows that I can share, milestones to overcome, achievements to celebrate , fears to dash, moments of love and affection but there is also lots and lots of normality. Many of our weeks and months are the same as everybody else’s. School runs, sibling rivalry, swimming lessons, homework, tantrums, laughter, holidays, shopping trips, fights over the iPad or the remote control, we have it all!
So this week is my birthday and as with all forty-somethings (whether they admit it or not!), we can’t help but reflect. That strange middle ground where we think we’re still young and cool, our kids think we are old and we’re secretly saving our cash in the hope that we can retire early and live at the beach in Spain!
I like to celebrate birthdays. I am not one of those humble people who like it to pass by quietly. I like to drink wine, meet friends and laugh about the fact that we got here without any serious injuries! I like to think about how far we have come, how lucky I am to have a happy family, a good life, great friends and plenty to celebrate.
Of course when I think about life so far, I can also identify many of it’s disappointments. Life knocks you down along the way, it disappoints and people will let you down. Life is full of disappointments and these disappointments shape who we are now.
But another thing I wish I knew 5 years ago is that I do not put my son’s Down Syndrome in this category.
Noah has never let me down. He has never disappointed me.
Whilst I can look back at his diagnosis of Down Syndrome with an element of sadness and fear, I cannot consider the fact that my youngest child has Down Syndrome as one of those life disappointments. Sure, there are days I wish I could pull out that extra chromosome or at least quieten it down a bit. There are days where everything seems harder, we have to slow down, we have to consider each step, prepare and have lots and lots of patience.
Every day I wish he could speak to me clearly, tell me what is on his mind. I get a pang of sadness when the kids around him are excitedly chatting about their day and he is quietly taking it all in. But like with everything else, Noah substitutes his lack of words with an incredible gift in communication. He has more charm and cheekiness in one finger then many of us have in our whole bodies! And of course when he does utter a new word, the sense of joy and achievement almost makes it worth the wait.
The fact is that if I knew 5 years ago what the journey ahead of me would look like, I would have saved so many of my tears. The days of achievement, laughter, love and success begin to far outnumber the days of sadness or fear. Having Noah has turned out to be that positive and transformative experience I could never have expected.
But I will also admit, the journey is not a consistent rollercoaster of ups and downs, of learnings and adventures. Lots of days are normal. Wonderfully disappointing, non eventful and normal.
Thats what we all want right? To be the same as everybody else, fit in with the crowd and be so disappointingly “normal”.