Monday, 29 October 2012

If I Had a Magic Wand

If you had a magic wand, and you could go back and take out your child's extra chromosome, would you?

I have seen this question a few times since Phoenix was born. Surprisingly, many parents say they would not. These parents think that their children are prefect the way they are. That they have come to love and appreciate their child exactly the way they were designed and they wouldn't change a thing.

For me, I'm not so sure. Maybe a clearer answer will emerge as Phoenix gets older and I get a better sense of how she is going to contribute to the world. For now, my answer is yes, I would take the extra chromosome out. My answer would be the same for any other significant disability or challenge. Why would I want my child to struggle more than she has to? More than everybody else?

However, sometimes I think this is a bigger question. If  we all could go back and skip the times when we struggled, when we felt pain, when we made really, really poor life-altering decisions, our lives would certainly be easier. You could argue that we might even be happier. But would our lives be better? I don't know.

And if we don't face adversity, then how do we grow as people? How do we make better decisions in the future? How do we adapt our responses and learn from our mistakes? How do we develop wisdom? Perspective? How do we grow?

How can I separate my growth into parts? How much is due to the long path of acceptance of Down syndrome, and how much is simply due to becoming a parent? To becoming responsible for keeping another human being alive?

In some ways we become more clearly ourselves when we struggle. Whatever doesn't kill us, makes us stronger. This is one of the few cliched lines that doesn't rub me the wrong way, because in my life it has been true. I am stronger. I feel more insightful. I have more perspective. I have grown.

But this isn't just about me. It's about Phoenix too. Although everyone faces adversity in their lives I worry she will face more of it. That she'll be more likely than other people with 'hidden' disabilities to be prejudged. That even if she happens to be the most capable and talented person with DS ever born, that society's notions and perceptions of DS and other disabilities will push her into a corner that she cannot turn out from. That she will be stuck between two worlds and will fit into neither of them.

I guess I just worry.

I should clarify that these aren't worries that keep me up at night. I don't obsess on this. It's not like worrying if the bank is going to foreclose on my house or that my parent is going to drink themselves to death, or worrying for my physical safety. These are very serious concerns that would keep me up at night if they were happening to me. It's just a thought that comes through from time to time.

But it is concerns such as this that make me want to take away the extra chromosome. At least for now.

And as a final share for the day: Phoenix wearing her raincoat around the house. Just 'cause.


  1. Just my opinion but I think it is through our struggles that we become better people. Can you imagine if everyone's life was perfect always. I believe in allowing my typical kids to struggle too. I see parents that make their kids lives easy, never say no and keep them from feeling pain. Those kids usually don't turn out very well or productive. I wouldn't take Macy's chromosome away. I would lose part of her at the expense of her learning quicker.

  2. I may be a little emotional right now but this post makes me teary. My daughter with DS is going to be 20 at the end of the year and over the years I have heard this question many, many times. All parents hate to see their children in pain or struggling. Would I take her extra chromosome away? No but for purely selfish reasons. I wouldn't be who I have grown to be without being witness to her growth/struggles and prejudices society places on her. My other children wouldn't be as aware of other people and their stuggles or prejudices. Our family wouldn't be as strong. Is this something that keeps me up at night? No, but I do think of this as our society becomes more aware of prenatal testing. Instead of asking ourselves if we would remove the extra chromosome in our children, we should be asking them if they would like it removed. Does my daughter wish she didn't have the extra chromosome? Definitely not! She likes who she is and is happy with what she has and will accomplish.

  3. I think this is one of the most fundamental issues of existence. This question is about Phoenix, of course, but it is also about everyone she meets. She may contribute to the personal growth of a lot of people in a way that a "normal" child might not. She might cause more smiles, more love, more empathy. She might leave the world a better place, without ever having really formed the intention to do so. I am not saying this WILL happen - though I think it very well might - I am only saying that there is a bigger picture to this than just the effect it would have on Phoenix. The world might be a poorer place if she were not exactly as she is.