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Letting Go of My Imagined Ideal for My Son With Down Syndrome

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We didn’t learn our son, River, has Down syndrome until he was 6 months old, and although he was slightly delayed in typical milestones, he was pretty much keeping up with his peers. He smiled, rolled over, lifted his head up, laughed and sat up at near typical times; although he was late, there were no huge delays.

It was easy to convince myself it would always be this way and believe his extra chromosome wouldn’t significantly hinder his life. I clung to the fact that it may hold him back slightly but he’d keep on developing right alongside his peers.

And then he didn’t.

River smiling at camera holding a drinking glass

As River has gotten older, his delays have become more apparent and it’s clear he has an intellectual disability, which is common with Down syndrome. The delays become more obvious with age as the gap between him and his peers widens. Don’t get me wrong, he is thriving and doing fantastic, but alongside other children his age you can see the developmental differences. He may have started crawling an climbing everything at 12 months, but he didn’t take his first step until he was 2.5. He may have said his first words before his 1st birthday, but now at nearly 3 he only has about 20 words. Fantastic, yes, but realistically he is underdeveloped for his age.

It’s not something that particularly worries me. It doesn’t make me feel sad — for him or for myself. I can’t explain why, but I guess I believe he’ll be whoever he is meant to be and do whatever he is meant to do. I understand when it hurts other parents to see their children not doing the same things as others kids their age, it brings it home that they are different and that their lives will be different due to Down syndrome. That’s hard to take for any parent, and one of the biggest challenges of having a child with a disability. I’m just personally OK with it. My closest friend has twins a few weeks older than River and I’ve never felt a pang of jealousy, and I’ve never looked at how brilliantly they’re doing and feel sad for River. They are beautiful, smart and wonderful children, but so is River. He’s just different, and that’s OK.

When River was a baby, I convinced myself that Down syndrome wasn’t really going to affect him too much at all. I mean, we’d done six months without even knowing, so it couldn’t be that different, right? The fact that he didn’t have any health complications at all and we’d never had to face any medical interventions also helped me cling to this idea. River was going be this big example of somebody with Down syndrome living a “normal” life. He was going to be independent and achieve so much that he would shock the world. He was going to defy experts and prove the world wrong about the abilities of people with Down syndrome. I was going to work as hard as I possibly could to mold him into some kind of superhero, squashing the odds stacked against him. He was going to be the smartest, most able person with Down syndrome ever to have lived.

And then he wasn’t.

Do you know what though? It really doesn’t matter. River’s delays may have become more obvious, but it’s also become more obvious that he is an extraordinary child. River is not defined by his achievements, he doesn’t become better than any other child with Down syndrome just because he can do more. That’s a whole load of pressure to place on any child and also on ourselves as parents. Our children do not have to be the best and it’s unfair on everyone to expect or even want that. River isn’t here to prove the world wrong about the abilities of those with Down syndrome. He isn’t here to prove himself worthy of society’s respect because he can live alone or pass exams. He isn’t here to prove that communities should accept him because he can hold down a job or get married. River’s only duty to the world is to be himself and show the world that our abilities, success, appearance and wealth do not define us as people, our actions do. How we treat others and what we bring to society is what we should be praised for.

Our family is only a short distance into our life with Down syndrome, but I’ve already learned so much along the way. My biggest lesson by far is that River is going to be exactly who he is meant to be, and whatever he does or doesn’t achieve in his life does not make him any less of a person. Whether he is able to have any kind of independence does not make him any more worthy than somebody who doesn’t, and his academic ability will not make him a better or worse person than any other student. I will guide him, nurture him, teach him, advise him and adore him, and I will do my very best to help River be the very best person that he can possibly be. For himself. Not to prove people wrong, but for himself.

What I won’t do is rate any of my children as more or less due to intelligence, careers, wealth, possessions and skills. I’ll be saving that for their passion, their kindness, their bravery, their hard work, their determination and their ability to love and make people smile. Those are the things the world needs more of and those are the things that will make me proud. Always.

I have no way of knowing what River’s life will be like as he grows up. I have no way of looking into the future and seeing the man he will become. I desperately wish I could because I’m so excited! What I do believe is that he will be exceptional. Whatever happens, whatever path his life takes, whatever he achieves and whatever he chooses, I believe he will be brilliant.

Follow this journey at I Am River.

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Originally published: February 14, 2018
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