This weekend, I attended two social events where I didn’t know the majority of the people who were there. One was a Bunco night fundraiser for a friend’s son’s baseball team and one was actually an essential oils class that I was teaching. At both events, there was a large amount of time to chat socially, and I participated in several great conversations and met some fun people. As most do, the conversations turned to children. How many do you have? What are their ages? Etc, etc. Lately I’ve found when I mention that I have a 3 1/2 year old son, the topics that come up most frequently are how busy I must be chasing after him, that he must be talking up a storm and questioning everything, and oh, how’s potty training going? No, no, and umm…never going to happen.

I find it awkward responding to these statements and questions. I never take offense to any of it- it does make me sad and wistful for what would have been without G’s disease- but I appreciate people taking an interest in both of my children. I just don’t really know how to respond. Right now, I tend to say, “he has special needs and isn’t developmentally where most children are at his age” or some variant of that, and then if they ask, I will tell them more. And I do want them to ask. Because I do want to talk about Grayson. He’s my son, and his life is my life. He’s a person with a story.

Yes, Grayson is most definitely a person apart from his disease and disabilities. Of course he is. He has a personality and a soul. But it’s very difficult (impossible?) to separate Grayson the Person with Grayson the Person With Leigh Syndrome. Leigh Syndrome makes him who he is. When we describe Grayson, apart from his medical symptoms, we say he loves music and loves to swing. But here’s the thing- he loves music and swinging because there isn’t much else that he can love. And whatever is going on in his brain only allows him to love certain music, 95% of which is Veggie Tales. Sure, toddlers and preschoolers all go through phases where they want the same thing over and over, but Grayson has been obsessed with Veggie Tales for over 2 1/2 years. That’s the disease. And he loves to swing because it’s an activity that allows him to experience movement even though his body can’t move in any real, purposeful way. That’s the disease.

So when I talk about Grayson, I have to talk about his disease. Otherwise, it’s like he doesn’t exist. And that probably makes some people uncomfortable. Feeding tubes, wheelchairs, a terminal diagnosis, not having a wait at the ER (lucky us?)- all normal around here. So when I talk about these things- I’m just talking about my life. I’m not looking for sympathy, pity, or to be told how amazing I am. I don’t want to hide my son’s existence, or say he’s doing great when he’s not, but at the same time I don’t want to be a person who makes others feel uncomfortable, or put in a position where they just don’t know what to say. I don’t even know what to say half the time.

I don’t know what the answer is, but I hope that as time goes on, I’m able to find a balance in conversation between honoring my son’s life and his personhood with caring for the feelings and comfort of strangers who have no idea what we are going through. And actually, my bloggy friend J, whose daughters have autism, wrote this post with her perspective on talking to strangers about her situation- I think she has some really good advice and guidelines to follow.

Special needs parents are not professionals- I didn’t train for years for this job before I started raising this precious little person. Just like moms of typical children, I am figuring things out as I go, without an instruction manual. And this includes how to talk to other people about my kid. Just know that I want to talk about my kid as much as you want to talk about yours. I look at him and sometimes can hardly believe how lucky I am that I am the one who gets to be his mom. No one else on earth has that job. It’s hard, yes. I wish it were different, yes. But it’s still an incredible honor.

First time in his wheelchair, at church yesterday. He was SO serious.