Thursday, October 25, 2007

To Whom it May Concern...

Do not make me a martyr for parenting my son. Believe me, I'm no martyr.

Do ask intelligent, compassionate questions if you want to. I'm happy to explain about his different disorders, if only to educate that they are nothing to be afraid of.

Do not ask me questions driven by your curiosity of the strange and different. My son is not here for your entertainment. This is no freak show.

Do not try to imitate how someone else you knew with special needs used to speak, and ask me if my son sounds like that. It sounds like you're mocking my son, even if you're not trying to.

Do not ask me what I know about disorders he doesn't even have. He has special needs - not every disability under the sun. Go read Wikipedia if you want to learn.

Do not shake your head in astonishment when you hear about another of his doctor's appointments. All children go to the doctor. He just goes a bit more often.

Do not pat me on the back and give me an "attaboy". I don't need to be patronized.

Do not act like I'm some kind of extraordinary parent because I have him for a son. Some Many Most days parenting my other children is more difficult than parenting him.

Do not tell me how wonderful we are for taking on this challenge, or for raising him, or suggest we might not have kept him in the first place. This implies that he somehow didn't deserve to be kept or taken care of, which makes me very angry.

Stop glamorizing our life and telling me I'll be remembered in heaven for being his mother. He is just our son. Look beyond the wheelchair and you'll see just another little boy who has needs, just like our other children. It's not the TV-movie-of-the-week, Oprah-special-feature you're looking for. Move along if that's what you need.

Thank you.

Friday, October 12, 2007

It's Also National Pizza Month

I'm really lucky (knock on wood) that Ethan hasn't been sent home with fundraisers for school yet. I remember with disdain my own school days, begging people to buy something from me so I could win that new! bike! Every year, they'd hype us up with fancy talk and shiny prize photos. Even though I only ever sold to my mom and grandmother, I was sure this time, I'd win something great instead of another pencil.

I've got a million pencils.

I can't blame folks for turning away when they see yet another school fundraiser come by. Who needs another magazine? Frozen pies? Ten dollar trinkets? Cookie dough? And yet, I still remember how much it meant to me when someone would contribute to my school fundraiser. So I always make it a point to buy something, even if it's the cheapest thing in the catalog.

Similarly, I always get suckered into giving at the grocery store checkout. I feel bad that the teenager has asked the 45 people before to buy a paper shoe for a dollar, and was probably told by 43 of them "I gave last week." And really, what's a buck? The same holds for people I know going on charitable walks. I can't always give a lot, but I always try to give something.

And yet, I signed up for the local Easter Seals walk without much optimism for raising money. I know how hard it can be, and I know money is tight for a lot of people. What I didn't consider, however, was how tight the competition for charity dollars would be. Because, unfortunately, I was stuck asking for donations during October.

You all know what October is, right? It's Breast Cancer Awareness month.

Everywhere you look, there are pink ribbons and posters. Reminders that this is an important month. My office has signs up reminding us that 1 in 8 women will eventually get breast cancer. In honor of the month, there are several local breast cancer walks this month as well.

And this is important work. Breast cancer is a terrible disease. It affects thousands of women, and devastates families. I fully support the search for a cause, and I've given to many friends and coworkers doing breast cancer fundraisers over the years. And I'll continue to give as long as they continue asking me. I'll also give to their fundraisers for heart disease, and muscular dystrophy, and Big Brothers, Big Sisters. Because those are worthy causes as well.

But a lot of people seem to think they need to pick Their Charity. They have to decide which cause they're behind, and stick with that one. And breast cancer seems to be the charity of choice for a lot of people.

The big response when you ask for donations to a fundraiser is silence. I respect that, and I'm not going to harrass anyone. But this time around, I've gotten an explanation from several folks that they can't give to me, because they're already giving to so-and-so's walk for breast cancer. Because it's Breast Cancer Awareness month.

It doesn't bother me that they don't want to give. And it doesn't bother me that it's Breast Cancer Awareness month. What bugs me is that I wonder if they know what else October represents.

Did you know it's also Disability Awareness month?

I don't think it's popular to raise money for disabled people. There are no cute ribbons or posters around celebrating Disability Awareness month. No one wants to talk about the disabled, or think about being disabled one day themselves.

Part of the problem is that disabilities vary widely from person to person. Breast cancer is a disease with a single goal of "cure". But there are no cures on the horizon that will help every disabled person. Solutions are usually found on an individual basis, with ramps and crutches and special therapies. So it remains a problem that affects "them", not "us."

But that isn't really true. We are "them." Yes, 1 in 8 women will eventually get breast cancer. But did you know 1 in 5 people (men, women and children) currently have some sort of disability? And that eventually, 1 in 2 people become disabled in their lifetime?

Maybe someday Disability Awareness will get it's own special ribbon, and it's own massive press. Until then, it will be up to us, the family and friends and people with disabilities to spread the word. After all, charity begins at home.

(And no, I wasn't kidding about the Pizza thing...)

Friday, October 05, 2007

Linky Business

Because you can't get enough - More scattered thoughts separated by breaks!

New! and! improved!


I started a real entry last week, but I never finished it. I actually fell asleep while writing it. That's just how things are right now. With a new baby, it's every (wo)man for herself, so sleep when you can. (Except now, of course. Genius that I am.)

Things have been hectic, but I'm holding my own so far. A typical day goes something like this:

-Rush to work (late)
-Rush home (late)

Well... you get the idea. I'm actually really proud I've made it through four whole weeks of this. Granted, Ive almost used up my freezer supply, but most days I'm keeping up with her.

Although next month we'll be hitting her four-month sleep regression and growth spurts, so who knows where this is going. But for now, I'm doing it. And (as I'll explain if I ever finish that post I started last week) with Jete out of work, I'm all about getting the milk for free and not buying the cow. So to speak.


If you're looking for a good read, I recommend Billie's latest entry. It's an important message that can stand to be repeated: know your audience. Don't complain about your kids to your infertile friend. Don't complain about your parents annoying you to your co-worker whose mom died last year. And please, oh, PLEASE do not complain about having to lose those "last five pounds" when you weigh half of my current body weight.

I admit it's hard, and it's definitely something I'm guilty of doing. I've said stupid things in the presence of others without even realizing it sometimes. My mouth often works faster than my brain. I suppose the best solution would be to learn not to complain so damn much.

Yeah. Like that's ever going to happen.


Our family will be doing a local walk for Easter Seals later this month. We haven't benefited from this program personally, but we know a few folks who have, and it has made a huge difference in their quality of life.

This has been an amazing year for us. I haven't discussed the details much here, but our friends and family threw a benefit for Ethan in the spring and helped us purchase a handicapped accessible van to make transporting him easier. It touched us to see how many people in our community came out to donate, even strangers who had never met Ethan. Ever since, we've been looking for chances to give back to others, and this seemed like a good place to start.

If you're interested in sponsoring our team, email me and I'll send you a link.


Guess what? Panic attacks raise women's risk of heart attack and stroke! Awesome! So now, when I'm in the midst of that rush of terror, with my heart pounding and a terrible overwhelming fear that I'm going to die? I'm increasing the chance that I may actually die. Whoo-hoo!

It's funny. You'd think this article would have made things worse for me, but actually, it didn't. I think it's the nursing hormones keeping me halfway sane, because when I read the part that said the risk increased from 2% to 4%, I thought, eh. I can live with that.

What also helped is the fact that I forwarded this along to a few of my friends, who - surprise surprise - all have panic attacks from time to time. As a matter of fact, the majority of my female acquaintances have or have had panic attacks. While this may mean I attract other crazy people (sorry guys!), I'd like to think it means that underneath it all, women in general are a crazy bunch. I really believe it's those damn hormones jerking us around.

For once, my craziness is coming in handy. It's making me feel so normal.