When River was diagnosed with Down syndrome, I remember feeling like I needed to mourn the life I thought he was meant to have. Actually, as he wasn’t diagnosed until he was 6 months old, it was more like grieving for the life I thought he already had. I felt that I needed to say goodbye to everything that I’d envisioned in his future, that I needed to give up on everything that I’d imagined for him.
We all do it as parents don’t we? Picture our children’s lives and what the future holds for them. I assume that we probably all picture pretty similar things, and before our babies are even born we can visualize what paths their lives will take. We imagine our children’s days in school, friendships, university, a career, marriage and a family of their own. That’s pretty standard for how a life is meant to go right? And although it didn’t last for very long, there was a time that I grieved for all of those things. The very little knowledge I had on Down syndrome did not include any type of ‘normal’ existence, and the thought of River never being able to achieve and of these things hurt. It hurt a lot.
A friend visited not long after his diagnosis and she said one sentence that has really stuck with me. After I told her that I felt that I was saying goodbye to the life he was meant to have, she told me,
“No, you are mourning the life you THINK he was meant to have, the life you WANTED him to have. He is already living the life he was meant to have’.
She was so right, and it was exactly what I needed to hear at that time. I will never forget those words, and I hope they can help other parents in the same way they helped me come to terms with our new life. River is absolutely living the life he was intended to have and is on the right journey for him. In fact, he is taking his whole family on the journey they were meant to be on and I can’t imagine living any other way. This is absolutely the true path that my husband, my children and myself are meant to be following. River was meant to be ours, and he was meant to be exactly how he is. He is in no way a ‘mistake’. I will never think of his Down syndrome as a mistake, ever.
How many parents out there have children who don’t follow the path that they imagined for them, without disability playing any part at all?
There are so many other factors that can shape the way a person’s life spans out, to steer it away from what is deemed as ‘normal’. Society has shaped what is considered to be a conventional life, a worthy life, a successful life or even a happy life. Society has decided on what you have to achieve to be classed as acceptable, and if you happen to fall outside of that mould then you will always be viewed as inferior.
Who gives anybody else the right to decide whether a person can be happy or content being who they are, or living the life they have? It’s really sad that being ‘different’ has become so frowned upon, and that if you don’t live this planned out sequence of life then it’s not acceptable. What happens if you just don’t want to be ordinary?
There are many people who are led on a different journey and live an alternative lifestyle to what is considered mainstream. Many people live very different lives to what their parents had imagined before they were even born, be it through illness, sexual orientation, career choices or many, many other things. There are people who head into the darker side of things, like drug abuse or crime. Pretty sure no parents envision there child spending their life behind bars! Reality is that nobody has a crystal ball, unfortunately that important item was left out of the parenting bag.
My point is that having a disability is not a reason to think a person’s life isn’t what it was meant to be. Having a learning disability in no way means you can’t find happiness. There is no reason to think that your child can’t live a wonderful life, as hard as that might be to picture at first. River has taught us so much already and lives a wonderful life, he is happy and thriving.
It’s true that he may not be living the life I pictured whilst I was carrying him, but I hand on heart believe that he is living the life he was meant to have. I know he is living a life that will teach us and so many people so many things about love, acceptance and diversity. So he may never get a university degree, or get married or have an impressive career (notice how I say might…..), but in the grand scheme of things, does it really matter? Do those things really have to determine our worth as a person? We know it’s highly unlikely that he will have a family of his own, but who says that would have happened anyway? I know people who don’t have children purely through choice.
I have a huge belief in River and although I don’t know what they are, I know for certain he will achieve great things. And although he may face many obstacles in his life, I also know that he has many doors open for him. If he has doors closed on him, we will move along and find the next open one. 2017 is a great year for people who have Down syndrome, and for all the negatives regarding societies vision of our children, I still truly believe that things are changing for the better. I have to believe that. I just know in my heart that everything is going to be ok, that lives already are and will continue to be incredible!
So I am going to end on one of my favorite quotes. Cheesy? Absolutely. Do I care? Not even a tiny bit. This is what I want for my children, both of them. And whatever path they choose to take is totally fine with me. They are both exactly who they are meant to be. River is exactly who he is meant to be and Down syndrome does not alter his worth. He is my son and he is River.
‘When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.’ – John Lennon