A long time ago, before kids, I had a conversation about the state of the world with a good friend. I told her I wasn’t even sure it was a good idea to bring children into such a mess! She said “Yeah, but there’s love and marriage and children and family” – the wonderful things that make life worth living.
After Frankie was born, I was starting to come to terms with her diagnosis when this memory came back to me. I suddenly was depressed all over again thinking she’d never have any of these things; things that supposedly make it all worthwhile. But another wise friend, Melissa, said to me “She will find the things that make her life worthwhile.”
Women with Down syndrome have had children, but it’s very rare. If they do achieve pregnancy, their child has a 50% chance of being born with DS. Men with DS are largely thought to be infertile, but it is a difficult statistic to measure. Throw in the fact that historically adults with DS have not been encouraged to date, marry or have sex and you can see why there is little information available.
We struggle with this a lot. In fact, the only time Seb has shed a tear about her diagnosis is when we talked about how she probably could not have a family of her own. It is heartbreaking to think that such a momentous choice in life has been taken away from your child right off the bat. I used to think that I would do anything in my power to help her have a baby. But now as I learn more and as she grows, I’m not sure. The few people with Down syndrome who have had children have required a trememdous amount of support. We have to be realistic.
BUT, that is such a long way away. We don’t know how she will develop, we don’t know the advances that will be made in the lives of people with DS, we don’t know if she’ll even WANT children of her own. This is exactly how and why I have learned a huge lesson in being present and living in the moment since Frankie was born – we just can’t know what the future holds so there’s no point in worrying about it.
In the meantime, I hold my friend Melissa’s words in my heart. I have to trust that Frankie will pave her own path to happiness.