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.

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...)

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:

-Nurse
-Pump
-Rush to work (late)
-Pump
-Work
-Pump
-Work
-Rush home (late)
-Nurse
-Play
-Nurse
-Pump
-Sleep
-Nurse

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.

For Jacqui

Jacqui of Terrible Palsy is taking a break from blogging. I can't blame her. I've been there recently, and will be again, I'm sure. Life is not the Internet, and the Internet is not Life. If you ever begin to doubt that, it's time to pull the plug. (On the computer, that is.)

Her reason for taking a break touches on feelings I've had as well. If you haven't read her latest post, please do. I started to write a comment there, but it quickly rambled on out of control. (Me? Ramble? NEVER.) Instead, I thought I'd post it here on my own spot. It's a topic that parents of special needs children - and most parents in general - can probably relate to.

***
There are many dark sides to parenting a special needs child, and not all are related to the medical world. A subtle judgemental undertow flows through conversations, stories and comments. There are always those who think they have the Answer to your Problem. They have some magic cure that a friend of a cousin of a neighbor's daughter used, and "Now she's just fine!"

These comments are annoying, but I've gotten used to them. When they come from a non-parent, or a parent with neurotypical children, I can smile and nod and ignore it a little. I know it's pure ignorance, not having walked a mile in my shoes (down a hospital corridor). They just don't know any better. But when the comments come from other parents of special needs kids, their words cut deeper. These are my peers. I am one of them. When they judge my actions, it hurts much more.

The hurt comes not from the source of the comments, but from within. They are touching on my darkest fears: that I am not doing enough for Ethan.

I will always wonder - if I had the courage, as some do, to research and travel and spend hours upon hours conducting ABR with Ethan, would his life become better? Or - if I'd only tried hippotherapy. Acupuncture. Chiropractics. Aquatherapy. Aromatherapy. Super strength vitamins. Any of a hundred new and amazing alternative treatments that someone out there swears by. There is so much out there we just never tried.

And all the "what if"s... If only we'd done his hip surgery sooner, maybe he wouldn't need to have it done again next year. If only we'd skipped his hip surgery altogether, maybe over time he would have improved with other therapies. If we hadn't had any other children, maybe we could have devoted more time to exploring therapies and fighting for his rights. If only we'd fought the school longer and harder to get him more therapy during the school day. If only we'd fought longer and harder to get the insurance to pay for outside private therapies. If only we'd sent him to an expensive private school that would have been better than our crappy public schools. If only we'd moved to another city or state where they have better public schools. If only I'd gotten one more second opinion with that special doctor a few hours away, or in the next state over, or across the country... maybe then, things would have been different.

My logical side knows that Ethan's CP is so severe that these decisions would change little in his long-term outcome. The differences, if any, would probably be imperceptible. But still, I'll never know that for sure. More imporantly, if Judy in Toledo and Gary in Detroit and Susan across the ocean spend 50 hours a week on special therapies and on plain old PT and OT and ST, and spend hours writing letters and making phone calls and calling specialists until they get the answers they were looking for, shouldn't I?

And if I don't, doesn't that mean that they must love their children more than I love mine?

And if I don't, doesn't that mean they are better parents than I am?

I feel badly when I hear comments from others about my parenting skills. But the truth is that Judy and Gary and Susan don't have to speak a word to me to make me feel like a terrible mother. I do it to myself every day. I guess deep down I know that I don't deserve it - that it's really, really hard to have a child with special needs - but still, it's no comfort. I want to have the foresight to know which therapies are going to work and which aren't worth the trouble; whether phone call number 17 will solve our problems, or if I should just stop at phone call number 9; whether to take the left fork in the road, or the right.

I'll never know what these therapies might have done for him, and whether they would have been worth the time and efforts. But I'm doing the best job I can. I know he's happy, most of the time. I know he's loved. I may second guess myself, and others may try, but I know the only judge that matters is Ethan.

Luckily, he's more forgiving than I am.

Annoyed and Bulleted

• It is officially Sunday, which means I have less than 24 hours until my date of return to work. How can I leave this teeny-tiny baby already? It just reminds me how inadequate maternity leave allowances are in this country. I'm fortunate to work for a generous company that actually pays for six ("natural" delivery) to eight (c-section - "unnatural"?) weeks of maternity leave. I got eight for my scheduled c-section, and then extended my time two more weeks with the vacation and comp time I've saved up. It sounds like a lot, but now that it's over, it hardly seems like enough.
• As short as this leave seems, I'm reminded that my last job paid zilch, zero, NOTHING for maternity leave. All they did was allow you up to 12 weeks of unpaid family medical leave without firing you (although they encouraged you not to take more than six). That's the bare minimum required by law in Massachusetts. And the government thinks that's generous. How many women do you know that can give up their full-time job for 12 weeks without pay?
• At the same time, I'm bombarded with messages of guilt from that same government. They're insistent that I need to breastfeed for at least 6 months, preferably a year, to reduce the country's health care costs and prevent my child from becoming a part of the so called "obesity epidemic". Well, how exactly do they expect me to do that while I'm away from my daughter over 9 hours a day? Why, pump, of course! Tear myself away from my job every 3 hours to hook myself up to a machine and milk myself. The process itself takes up to 20 minutes, not to mention washing all of the pump parts each time so it can be ready for the next session. I can hardly wait to look for the time in between the numerous meetings that have already been scheduled for me - including a four hour meeting next week.
• Ethan starts school on Monday, and I had the pleasure of getting a phone call from the school telling me all of his medical forms are expired. I guess I was supposed to know this by osmosis, since no one mentioned this before Friday afternoon. Then again, maybe this was a common sense issue that I should have questioned myself, but I've been a bit distracted what with the round the clock nursing and sleep deprivation the past few months, and they knew this. So now I have to scramble around first thing Monday morning, faxing forms to doctors offices and begging them to fill them out and fax them back to the school ASAP so that he can continue to get his medications. I'm sure they won't mind at all, considering they normally require two weeks to complete forms like these. And doctors' offices are nothing if not flexible.
• In other news the school forgot to share with us - my father-in-law, a teacher in Ethan's school system, ran into Ethan's teacher last week. Teaching. At another school. This was news to us. We had been told at his IEP meeting and in every conversation that she was going to be his teacher for two more years, and we made every effort to foster a relationship with her so that we could all work on the same page. From his first day at school, we went in to meet her, made time to call her periodically to check in on his progress, and kept her posted about his changing appointments and treatments. Now we're going to have to break a new teacher in and do what feels like starting all over again.
• The best part? No one bothered to tell us. We found out by accident. His teacher from last year always gave us the impression that she would continue working with him, even through the end of his summer session in August, when she wrote "See you in September!" in his notebook. (I guess she forgot to write "NOT" at the end.) Ethan would have started school on Monday without us ever knowing he had a new teacher. We don't even know her name. Maybe it's no big deal for most kids to start Kindergarten with a stranger for a teacher, but things are a little different for Ethan. We would have liked the opportunity to meet with or speak to her personally, rather than just sticking him on the bus and hoping for the best.
• I just checked my credit card statement and I'm afraid someone has stolen my number. There's a charge on there for over $100 - from some shop in Great Britain. I'm making a permanent dent in my couch and haven't showered in nearly a week; needless to say, the only England I've been to recently is New England. To add insult to injury, there's a tidy little fee for my "Foreign Transaction" on the bill.
• I'd call to dispute this charge if it weren't for one little technicality - all of the customer service numbers are available only Monday through Friday. Apparantly emergencies can only happen during regular business hours. Very helpful. More personal business for me to handle on my first day back at work.
• My mind is still not back to it's former sharpness, and I really miss it. I can't imagine being able to work very efficiently at this point with all of the holes in my thinking. To make matters worse, I've taken up that terrible parent technique of calling my kids by the wrong names. During a conversation with CG today, I called him "Ethan" by accident. It just pointed out how exhausted I am, because in five years I have never had a two-way conversation with Ethan, especially about weed-wackers.
• I'm especially tired of thinking in fractioned bullet points. You'd think this was a lazy writing technique, but really it's not. Everything inside my mind is in the form of choppy shopping lists. I can't handle anything complex yet. I look forward to the day I can think in paragraph form again. Oh, my good friend the topic sentence. How I miss you so.

So Many Questions. So Little Time.

How can nearly three months have passed since my last post?

How is it September already?

How do I have only one week - correction, 6 days - left to my maternity leave?

How can Ethan be starting big-boy-all-grown-up Kindergarten in only one week - correction, 6 days?

How can CG have outgrown all of his "T" clothes (2T, 3T, 4T) so quickly and moved on to sizes with no letters?

How can Jete's transitional leave from his job before its permanant termination be over already?

How can this person, this being that did not exist in even microscopic levels only one year ago, feel like an old soul that has always been a part of our family?

How can she have gone from this:
to this:
to this:


in only two months?

How can she be "only" two months old, when it seems we've known her forever?

He can she already be two months old?

How do I slow it all down?

***
I can't say enough how touched I am at your well wishes. I'm amazed so many of you have bothered to check back here when it seems I've had few words to share for nearly a year now. What a long, strange year it has been.

There is much to say. Discuss. Examine. I've been unable to do much more than read your blogs these past few months. (I can scroll with one free arm while nursing, but can't seem to get anywhere with one-handed typing.) In spare moments, I've started and abandoned half a dozen posts. Something always seems to come up and interupt me. Someone always seems to need me. I'm still getting used to this juggling act. And I know that time will become even more scarce when I return to work next week.

But I also know that I need this. I love this. I thrive on a connection, on finding others on a similar journey and not feeling so damn alone. I crave a creative outlet; something just for me. I can't wait to spend some time sprucing this place up a bit. Making things fresh and clean again. I deserve something special for myself amongst the constant neediness I seem to encounter every minute of every day.

It may not be often, but I will continue, when I can. Be sure of that.

You haven't seen the last of me yet.

:)

Term

Hello out there.

I'm still alive. You might have noticed it during my sporadic commenting on your sites now and then. Occasionally I've been moved enough to comment on someone else's thoughts - but I just haven't mustered up the energy to compile my own thoughts in any coherent matter.

This pregnancy has been rough, in more emotional ways than physical I suppose. I never believed or experienced so called "Pregnancy Brain" in my previous pregnancies, but this time it hit me hard. I can't think, I can't speak (is that a song? no clue.) and I even rear-ended someone a month ago while in a complete haze. A friend suggested it's probably the children I already have that are contributing to my absentmindedness, but I have to believe it's all of the people in my crazy life - including the one still cooking.

Depending on whose chart you use, I'm 37 weeks exactly today. Officially full-term, by most accounts. At my last ultrasound, the baby was measuring in the 80th percentile or so - already 6 pounds 11 ounces. Compared to the boys' birth weights (3 lb 14 oz, and 6 lb 3 oz) that sounds amazingly large to me.

On one side of my brain, I'm reassured by these numbers, but only to a point. I still feel a twinge when I tell coworkers that I'll be going on maternity leave soon. I feel like I should leave out the "maternity" part, because - what if? What if something else goes wrong? Even though I'm well past the point that my problems happened with Ethan and #3, and everyone is being super cautious, and I'm being followed with testing twice a week... there's just no "out of the woods" in my world.

I'm off soon for BPP # 3 (or 4, who can keep track) and feel my same combination of calm and nervousness. I can feel the baby moving now, but what if she doesn't cooperate during the test? What if something else shows up that hasn't to this point? What if my BP is up now?

Yes, for those of you paying attention, I said "she". As far as they've been telling us, this baby is a girl. We were very happy to hear that, but honestly no happier than we would have been if they said it was a boy. I could write sixty posts on the ridiculous comments I've received - both positive and negative - regarding baby gender. Yes, I'm excited to have the chance to see the "other" side of parenting now, but I would have been just as excited to have the chance to have three boys. Seriously.

NO. I'M NOT JUST SAYING THAT.

NO. I WASN'T SECRETLY HOPING FOR A GIRL.

Anyway, I need to start motivating myself and CG to get out the door. This post is all over the place, as is my brain lately, but I make no apologies for that. I also don't apologize for not posting in months. I am not ready to throw this blog away, but I'm also not ready to feel that my life or free time are less important than writing something.

I do miss writing though, which is very cathartic for me. I especially miss the community I've forced myself into, of other parents of children with special needs. No person I've met in "real life" has been able to completely express what I've felt like Billie, or Rob, or the dozens of others I've come to know and love through their brutal honesty. I will continue to stalk them through their blogs as long as they feel like sharing.

And eventually, I will get around to expressing my own feelings again. As much as this pregnancy is a joy, I can't wait to have my brain back again. In 10 or 20 years.