Saturday, May 16, 2009

Bear with me as I try to be educational for once...

Happy Saturday morning! We're all sitting around the living room watching the Monster Hits Fuzzy Awards video.... The best video EVER. The cause for my very manly husband to endlessly sing "C is for Cookie" and "Furry and blue... And ORANGE!" over and over all day (and, okay, me too.) I'm about to dig in to some paperwork but wanted to do a little post first...

Dax is doing great! We went to order his glasses yesterday and we'll have two pairs in 7-10 business days. I cannot wait to see how he responds once he's able to see... I'm not too concerned about him keeping them on since he's always had something on his face, so what's one more thing? I AM concerned about him pulling them into his mouth and teething on them, but we'll cross that bridge when we get there.

After we picked out the glasses we stopped by Centennial to say hi to some of our old friends. I don't notice how much Dax has grown until I see a itty bitty one get rolled by... Wow. He really is such a big boy now!!!

And, since my last report, he has decided that pulling up is easy. He did it once, and now you can't stop him (not that we want to.) He's doing so amazingly well.

And, of course, Big Mama and Baby Ty are doing fine. I'll be 28 weeks on Monday... That's a huge milestone! Still planning on keeping this bun baking at least 12 more weeks, though... There can't be that much difference in birthing a 1-lb baby and a 11-lb baby, right??? :)

So, I actually have a reason for posting today other than just updates... It's something I think about a lot, but something came up the other day with another mother and it's just on my mind now, so you guys must suffer the consequences :)

Let me preface this by talking about what it's like to be the mother of a kid who's not "perfect." I'd be willing to bet most of you parents feel your children aren't "perfect," so I think you'll understand. You know the feeling you get when your kid throws a tantrum in public, or says something embarrassing to someone, or gets hooked on drugs, or fails a class, or is born with a disability... It's really all the same. Very, very different, but still the same. Guilt and fear and pride and love are born in you the second you have a child, and from all reports those feelings never go away. Now, imagine how you feel when your child does something that is not "perfect." You worry that people will talk, you wonder what people think. You wonder if you've failed as a parent, if there was something you could have done differently, if only you had tried harder and taught your child better or set a better example... Dealing with "not perfect" children is trying for anyone, and every parent has to deal with it.

Now, imagine every time you take your child into public people are able to see he is not "perfect." They stare at him or whisper, and children ask their parents questions and their parents "shhh" them. The occasional person will approach and ask you what's wrong with your child, and some will even make "helpful" comments about things to try to help your child.

And this is not an infrequent occurrence; it's an everyday one.

I'm a very lucky mother. I've worked in disabilities my entire adult life, and I understand that people's curiosity is built in fear, and compassion, and lack of knowledge, and I'm used to the stares and whispers. I'm also very blessed to have a son who is doing so exceptionally well against all odds. I admit, there's a small (okay, sometimes not too small) part of me that will always blame myself for everything that has happened. (Again, it's the mother in me.) Along with that, I know there are people out there who judge mothers of sick children, because it must be our fault, right? If we had eaten better, eaten more, eaten less, prayed harder, exercised more, exercised less, had a cleaner past, or taken our vitamins we would have had healthy children, right? And, you know what, when your baby is in a bed right next to a baby born addicted to drugs... There's really not much that separates them at all.

But I digress.

My point is, most people don't understand how their reactions can effect a parent of a child with a disability, because, quite honestly, most people don't know how to react. Children are supposed to be born healthy and whole and "perfect" and those who aren't pull at heart-strings like nothing else can, but they're different, and different so often = frightening and deserving of pity. Even if the children are not able to notice, the parents are, and it can sting sometimes.

(I should add here that I think it's funny when people pity us. I think we are extremely lucky to be Dax's parents, but that's a whole other post entirely...)

So, on to the purpose of my post... To educate you on what to do and say when you encounter someone with a disability and you wonder what to do... The correct answer is to...

Okay, so there is no correct answer. Every mother and father and child are different. Speaking for myself, I would much rather someone ask me about Daxton than stare. Kids are awesome :) They look at him and say "Why does he have that thing on his face?" and I give a simple explanation, and they smile and say "okay" and all is well. Adults are often sneakier, but I would much rather an adult say "Oh, what an adorable baby. I've never seen a child so small on oxygen," and then allow me to elaborate if I so choose, than have an adult pretend to ignore him then stare when they think I'm not paying attention.

Other parents have different preferences, and I can't speak for them. What I CAN do is give a short list of universal "What not to do's." Here goes:

  • Stare
  • Touch the child without the parent's permission. Sick kids + new germs can be disastrous. Don't be offended if the mother says no, and don't be offended if the mother says okay, but then squirts you with sanitizer first.
  • Ask "What is wrong with your child?" It's just a bad question.
  • Compare apples to oranges (i.e. your child is just like my friend's son who has autism/CP/Downs/etc...) Disclaimer: It IS okay to say something along the lines of "I don't know much about your child's diagnosis, but I do have a friend with a child with ______ and I know some of the struggles she's faced..."
  • Say you know what the family is going through if you don't (i.e. I know all about prematurity; my daughter was 2 weeks early.)
  • Be anything other than optimistic. Now is not the time to comment on that article you just read about short life expectancies, the cost of long-term care, or drug side effects. Stick to comments about how beautiful the child is, what a fighter he is, how cool his wheelchair/glasses/walker/etc... is, and what amazing parents they must be. And feel free to ask if it's okay to add the child to a prayer list.
  • Treat the family with pity. Many families are in need of support, and if you see an area where you can help and feel the pull to do so, please do. The family does NOT need your pity.
  • Minimize what the family is going through (i.e. "You're lucky. If he's in a wheelchair you'll always know where he is."
  • Forget to count your own blessings. (i.e. "Oh, be glad your child can't crawl... Mine's all over the place and I'm so tired of him getting into things.")

So, admittedly, it's a short list, but hopefully it will help. Even as a mother of a less than "perfect" child (even though I think he's pretty darn close to PERFECT :), I find myself curious about other people's children and their diagnoses and issues, so it's a reminder for me, too.

So, thanks everyone for listening! Hope you have a great weekend!


The Snyder's said...

WOW... You wrote this so well...

Laura (speaking for everyone!) said...

Awesome blog and so well put. I know that all those comments eat at a parent... To me- all these babies ARE perfect- I guess when you see it and understand, these precious babies aren't so scary... Loved your blog!

4 on the go said...

I have to give you credit for writing this post the way you did.
I felt like i was reading my very own post When caden came home and honestly i did not put it as good as you did here.
I think Dax is an amazing little boy who has the most adorable face i've ever seen.
Love the post

Anonymous said...

You go girl! Awesome post.I agree with Laura--all babies are perfect! I reckon you have to experience the NICU to know what goes on and how perfect these babies really are and what fighters they are! Loved the post!

Rhonda said...

Beautifully said and right on the mark!

Ryans Mama said...

Thank you for that post... maybe you should do a PSA on TV to educate more!!! Anyone that has pity for the disabled is at a loss, they will never feel the joy that a real accomplishment can bring! If I may add one to the what not to do's: Never ask the parent, "Are you going to keep him? Wouldn't it be easier to give him away?"

Jennifer said...

Awesome post and very well said....and so honest! You are a wonderful momma and Dax is super lucky to have you as his personal assistant. He's about the cutest darn thing I have ever seen! I pretty much fell in love with him when your husband showed me the picture of him fishing. I hope you don't mind that he has a new secret admirer. I hope that we can get together sometime, I'd love to meet you both! And I would love to learn more about the preemie mom group your husband was telling me about. Please feel free to email me at Jennifer

Jennifer said...

You did a great job, Mollie, on writing this post. I love your sense of humor! You need to pass some of it on to me! I bet it has never gotten you into trouble before, huh? Nope, not one bit!! =)

Thanks again for all your support with my previous, innocuous post. Glad that week is over! I'm mooooving on!

Daxton's Personal Assistant said...

Thanks all! And Andrea, OMG are you kidding me??? No one has ever asked me that. What did you say???

Kelly said...

Thanks for the list. It is hard to know what to say but now i know what NOT to say

Tiff-E said...

I really liked this blog Mollie. I'm glad you wrote it.