A blogging momma posted a collection of statements today from parents of children with Down syndrome. I’ve been thinking about her question for a while now – she asked what we want the world to know about raising a child with Down syndrome. I wasn’t really sure what to say at first. I think it had to do with my aforementioned funk. Now that I’m feeling a little more clear-headed the answer is a bit more apparent to me. So, what do I want you to know about my life?
To steal a phrase from yet another blogging momma, I don’t love Rowenna despite Down syndrome…I just love Rowenna.
I’m not stronger than you or more special. You can absolutely do what I’m doing if given the opportunity to raise a child with Down syndrome. We all take what we’re given and run with it – and you never know what you’re capable of until you’re in that situation. Believe me – if you would have asked me while pregnant if I could raise a child with Down syndrome, I would have looked at you like you had grown a third eye and said something along the lines of “Oh, heck no.” But yet here I am, raising my beautiful girl. Are there hard days? Sure. But all I’m doing is taking my life and living it – just like you would do in my shoes.
Having a child with Down syndrome teaches you quite a bit about humanity – the good and the bad. We have made some amazing new friends, people we would have never met if not for this extra chromosome. We have been the recipients of incredible generosity. The vast majority of our friendships have only grown stronger since Rowenna came into our lives. We have examined our own stereotypes and fears about disability and about parenting in general and are slowly emerging (hopefully!) stronger and more compassionate.
But yeah, there are some lows. The things we have read and been told about our child are downright sickening. There are people who think she is a drain on the system, people who think programs shouldn’t exist to help her. There are people who think she just shouldn’t leave the house, and people who think we should be ashamed of her. Yes, there are even people who think she shouldn’t be alive. There are moments when these things get me down but generally, this is just fear and ignorance talking and it is getting easier and easier to brush off. These attitudes are there, though, and they’re part of our world.
In the end, if I could leave you with just one thing, it’s that Rowenna is just a baby. Yes, she has Down syndrome. She also has blue eyes, 10 fingers and 10 toes, an infectious smile…the list goes on. I change diapers, I dress her in ridiculously cute outfits, I sing songs to her and read her books, just like any mom.
So that’s how I feel today, on my first Mother’s Day. I still have no idea what the heck I’m doing, but I do know that I love Rowenna very much.