How Much to Say

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.


  1. Erin on June 3, 2014 at 1:18 am

    Beautifully written, I have no answers or insight…just wanted to say you truly are a gifted writer. And I love the picture of G, too cute!

  2. Down On The Farm on June 3, 2014 at 1:37 pm

    I don't think there is a right or a wrong. I have two normal children. And my sister-in-law has two special needs boys. And I always felt awkward talking about my kids because I was afraid she thought I was bragging. I wasn't at all. And, like you, I didn't want to make her uncomfortable, but I wanted to talk about my kids. That's what mom's do. I think you do what you said, you talk about Grayson, and then they can ask if they want to know more, or not. THERE IS NO RIGHT OR WRONG. I love reading about Grayson on your blog. And I prayed for him again this morning. I pray for him, and for you, every day :). You are blessed to be Grayson's mom. I know you wish it were different, and that is completely O.K. We all want what is best for our children. Your children are precious, each in their own unique way. Have a very blessed day!!!!!

  3. Esperanza on June 4, 2014 at 4:58 am

    Thank you for writing about this. I read J's post and I so appreciated hearing her views on this, and now I very much appreciate reading your own.

    I think I generally trend toward the side of honesty, even when it makes someone uncomfortable, but I've never had to wield the kind of information that you have, and I know that kind of information makes people a great deal more uncomfortable than any truth I might spew without invitation. I imagine it must be very difficult to say your truth and then elaborate on it without feeling like you are either invalidating it (by rose-coloring it in some way) or making it seem worse than it is. Because the truth is that your situation is complicated and mess and IMPOSSIBLE to explain in a short time to someone who doesn't know you well (or at all). How can you truly communicate how it is both amazing to be Grayson's mom and devastating to know he is held hostage by this horrible disease? How can you properly articulate that parenting him is both an unspeakable blessing and an impossible task? Even now I struggle to find the right words, because nothing seems to fit just right. There just is not short, easy way to convey it, at least not accurately, and so what can you say?

    I don't envy you this complicated task. I'm sure you handle it with more grace than you give yourself credit for. You certainly do here.

    Maybe you should just give them all the URL for this blog? If they really want to know, they can read it all here. 😉

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