I have talked with four people… oh wait I almost forgot the obligatory Laelia pictures.
My two teeth!
I dropped my toy! :’(
No seriously Mom, don’t get up, sheesh. 
I love Megan’s bed! Zzzzzzzzzzzz.
Better? Okay, where was I? Oh yes. I have talked with four people (all strangers) this last month while out and about who saw my daughter, guessed incorrectly at why she was wearing shoes with a bar and then said, “Oh my cousin/niece/son/friend had that bar and now he/she does gymnastics/baseball/soccer/dance.” Of course I’m not going to explain in a brief encounter that my daughter actually was born with little to no muscle and multiple joint contractures. I just say, “Oh wow that’s great,” and keep walking/shopping/eating. I guess lots of kids have DB bars on their feet for different reasons. Good to know. Usually I don’t go into Laelie’s disability unless people seem really interested. It’s not that I don’t want to talk about it, I do! It’s sometimes like the elephant in the room, and I want to talk about it (not all moms do, but I do), but it makes people SO uncomfortable to hear about arthrogryposis and amyoplasia. First I hear about how they’ve never heard of those conditions. *sigh* Yes, I realize they are rare. No, there is no cure. Yes, they do exist. No, it’s not like your niece/daughter/cousin/friend… bleh. Thankful I’ve recently met great people who have not turned our conversation into a tragedy. They seemed interested and were curious, but didn’t gasp audibly or change the subject quickly.
The best thing to do is to listen. Asking questions like, “How does that work?” or “How does she react to that?” Instead of, “What’s wrong with her?” or “Why does she look like that?” makes all the difference. It’s a subtle difference, but one way of talking separates the child from the disability. That’s what I want to hear.
Actually I have spoken to a couple other moms who feel lost in what to say when someone asks about their kid’s splints or whatnot. We want to be treated like normal, but it’s not normal. We don’t want people to say they’re sorry, but sometimes we want them to feel sorry. We want them to act like nothing is wrong, but not blow off the disability either. We don’t want to hear about some person they knew who had some little tiny thing wrong with them that required some dumb little surgery and now they are 100% better, but we want them to be able to talk to us about their kids. It’s a weird balance. And the question remains, Is it better to say something than nothing at all? Usually. It depends. If the only thing you can think to say is, “God planned for this to happen,” or “You should be happier, at least it’s not fill-in-the-blank,” then maybe it’s best to just stand there looking uncomfortable. Hehe. Okay no I’m joking.
I found a little something online about how to talk to parents of disabled kids. But once again I found a list of don’ts. Don’t ask the following:
What’s wrong with her then?
Didn’t you have the blood tests when you were pregnant?
Did you consider having an abortion?
How long do you expect her to live?
I’m sure you’re glad your other child is normal?
Is it hereditary then?
What will you do when she’s too big to manage?
When she grows up will she be normal then?
Can she walk, talk, crawl, speak etc.?
I have heard that this type of diet can help children with this handicap
Yes well you may say, “That’s obvious! I would never say that!” But let me tell you now, Laelia is only ten months old and I have been asked in very similar language every one of those questions, except for the “aren’t you glad your other child is normal” one. Instead I was tentatively asked, “Do you have.. any.. other children?”
So I searched some more online and found another website from another mom with a daughter with the same kind of arthrogryposis Laelia has. Actually I’m getting a good picture of what Laelia will look like in the future. And while I want to make a disclaimer and say I don’t agree with everything on this website, I found one link very helpful. It was called Be Smart! It is just an honest mom talking about how she wants her daughter to be treated, and–surprise! surprise!–it’s how any mom would want their kids treated. One thing was how it’s not good to talk about/ask about the child right in front of that child! These kids are smart and sensitive! Other stories were about living in the culture of the deep south and I find California much more enlightened comparatively. But I’m totally biased.
But my favorite site was Abby’s. Here is where I found the most complete information about what I was about to face when Laelie was first diagnosed. It was very helpful for me, although Laelie’s case seems to be a bit worse than Abby’s. But then again there are cases much worse than Laelia’s out there.
But back to our original topic of what to say to someone who finds themselves a parent of a disabled child. It seems there are dos and don’ts that change with the circumstances. At the very beginning of grieving, a lot of things can be taken the wrong way. When a mom is feeling a little better, they usually only see your love and kindness even if you say the “wrong” thing.
Charley says that some of his friends just listened and that was most helpful. Also it’s easy to screw up giving advice, even good advice. Usually it was better to avoid advice-giving. Charley also liked hearing, “Well you’ll be a good father,” or “Well we know you’ll do everything you can for her.” That type of thing that implied, without evoking pity or a lot of wincing expressions, that he cared about his daughter. Asking about the child is always good. Even when you hear answers and you don’t know if that’s a good or bad thing, it’s okay to ask, “So how do you feel about that?” Like someone would ask how Laelie is doing and we would say, “She moved her arm for the first time.” And they wouldn’t know if we were celebrating or grieving! Sometimes it was both! It was bitter-sweet. Yes, she hasn’t been able to move her arm a lot, but oh my dear lord, she finally moved her arm!
Actually it was always okay for people to say to me, “I don’t know how to ask this, but is okay to ask you about this?” As long as an effort was made to show sensitivity it was okay. But be careful because rarely is a parent going to say, “No, you can’t ask me!” Just follow their subtle cues. Like if they respond to your question with some round-about answer then stop asking. They are probably trying to avoid the question.
It is always appreciated to look into a child’s eyes and compliment the first thing you love about them. Of course I did hear a woman at Children’s Hospital once going on and on about how she didn’t think a child was good-looking so she just said, “Oh look at you!” If you have to say that, don’t announce later the reason for it. Sheesh.
What helped me the most were the people who told me they were thinking and praying for me and my baby. They weren’t afraid to hold her. They weren’t afraid to be by my side as I grieved. Who avoided giving advice and only asked hard questions after Google failed to answer them first. I loved to hear hopeful, positive things like, “She will do so many great things!” And I heard those things until I believed them.
She will do so many great things.
Her life has so much purpose!
She will touch so many hearts!
She will bring so much joy!
And she did.
