Time Heals All. Or Doesn't. Whatever.

Ten years. Ten yeaaaarrrrrs.

You'd think I'd be over it after 10 years. But I'm not. I'm so not.

I just spent a good hour re-reading a bunch of my content, and you know what? I'm a pretty damn good writer. It doesn't matter, though, cause A) that's my own opinion, and B) I'm too damn lazy to make anything come of it. Yes, my lawyers called me "prolific" and I'm a miraculously fast typist, but still. It's been years since I sat down and wrote a blog entry for good reason. I'm busy. I'm tired. I'm depressed. And I just got sick of talking about it all.

Seriously. SICK. OF. IT. Tired of examining my own life, my son's life, the "Why's" and the "What if's"... Tired. Tired of feeling like this. Tired of trying to be part of this community that I've been thrown into. Tired of being SPECIAL in a way that DOESN'T mean important, wonderful, or glamorous. Tired of being DIFFERENT.

My life was thrown into a tailspin 10 years ago, and it's never come back down. I say I'm over it, but I'm not. I say I'm okay with it, but I'm not. I'm NOT. I'm NOT okay.

I hate this time of year. Despise it. December to March are the worst months for me. It takes all summer for me to recover from those months, only to have a month or two of semi-reprieve before it starts all over again. I'm in full-fledged panic attack mode lately, with sleepless nights and uneasy days. I gave in, I'm taking the damn pills they pushed on me all those years, but they don't help. In fact, I think they made things worse from a panic perspective. But they take the edge off during the day. They make me slightly less of a moody bitch, so I swallow them down and pray for the best. Because after years of therapy and no cure in sight, what choice do I have?

This month, this year, things are so much harder for me... My sister-in-law found out she was pregnant, due almost 10 years to the date after Ethan's due-date. She was diagnosed with pre-eclampsia this week (CHECK), hospitalized for four days on bed rest (CHECK), and finally had a c-section to deliver the baby (CHECK).

Can anyone say Post-Traumatic-Stress-Disorder? Flashbacks and all around sadness, and I just want to go sit in a corner and cry by myself... Ten years. Ten years, and some days it's like it just happened.

Will I ever feel good again? I don't mean to sound negative; I have a lot of happiness in my life. My children are amazing, I love Ethan more than you can imagine, and I really do think he's happy most of the time. I have THE most amazing husband anyone could ever ask for, and I have to pinch myself most days to believe he's still here - with ME - by choice. But I don't feel GOOD. I feel like my brain has been permanently damaged along with my son's and I can't fix it. Will it ever be fixed?

I don't know the point of this post... It's been 3 ... 4... a bunch of years since I posted here previously, but something has been pulling me back. I guess it's this time of year, this milestone of double digits pressing on me, wearing me out, rehashing the past. It may be another 10 years before I post again, but still. I did it. I'm still here.

I'm still alive. Ten years stronger.

Live and Learn

It's 5:30 in the morning on a Saturday, and I've been up for three hours. I've got the stench of stale puke somewhere in my bedroom, but I can't quite pinpoint what it's coming from. In six hours, I'll be attending a birthday party at Suck-E-Cheese with 200 screaming children. I'd try to go back to sleep, but I've got to run to the grocery store before the party to pick up (more!) Pedialyte, some chicken soup, and an impersonal "I care but honestly don't have time to shop" gift card.

And you thought Sunday was Mother's day.

When Miss Em threw up at 2:30, I - first - cleaned her up and - second - apologized profusely. Totally Mommy's fault! With every child it's the same - I lose my head when it comes to a stomach bug. I always get fooled by a happy baby who hasn't been sick in over 24 hours. She's so hungry! She wants real food! She's held down the juice and crackers and rice and bananas and she's FINE now! Really!

Only not.

Note to self: NO MILK until vomiting has been gone for at least 48 hours. EVER.

You'd think I'd have the hang of this parenting thing the third time around. That I'd have learned something from the first two; that I'd have the shiny badge of Experience pinned to my shirt. But I don't. I'm the same bumbling fool that I was six years ago when I thought Ethan was All Better after a stomach bug, but (oops) he wasn't. The only difference is, now, there are more witnesses.

I've got another birthday this month, and I find I'm no wiser than I was at my last one. Isn't that supposed to happen? Aren't you supposed to magically mature over time? It happens at work. I've been in my position almost seven years. Over time, I've honed my skills, learned from my mistakes, and found the best way to do things. I'm comfortable in my job, I'm not too proud to say I'm pretty good at it. Most days, I feel competent.

I'm still trying to figure out when that feeling will translate to the rest of my life. Maybe by my next birthday?

I suppose I sell myself short. I am making progress in some areas, and I'm working to improve in small ways. I'm working on my emotional health, and I'm (still) in therapy, working on my anxiety issues. Over the past few months, I've had some small breakthroughs that I'm proud of. Physical health is still high on my list, and while I've got room for improvement, I'm healthier now than I've been in a decade. Now that the weather is nice, I'm exercising again, and I've really been trying to focus on healthier eating. Cutting out the obvious enemies - bad fats, high fructose anything - and adding in more REAL foods. I always feel healthier (and less guilty) when I make better food choices.

Jete and I are trying to actively parent in healthier ways as well. I signed us up for a parenting class after going to a short presentation, and it's been ... educational. The focus is on the child's feelings and motivation behind the misbehavior, and figuring out *why* they do what they do, rather than how to effectively punish. At the core, it's an earthy-crunchy, give your kid power, attachment parenting kind of approach, so I was sure Jete would hate it. But he's actually taken to the lessons more than I thought, and he's using some of the techniques during the week with success. My hope is that we can raise our kids to be whole, happy, confident adults without allowing them to become disrespectful, selfish or spoiled. Only time will tell.

And still - as I sit here pondering deep thoughts - how to improve my inner self, how to raise good children in a dark and cold world - I also wonder this:

Why is it a 10-month-old farting in her sleep is so damn funny to me? (Yet, husband farting in his sleep? Not so much.)

So yeah. Maybe we'll try for that "maturing" thing tomorrow.

(Not So) Short and (Not So) Sweet

I'm going to try to keep this short.

No. Seriously. Stop laughing.

If I don't keep this short, it will never get posted. It will die a thousand deaths like the dozens of entries I've started and stopped over the past few months because I either 1) lost interest, or 2) fell asleep, or 3) I got... wait - What was that noise? Wait, let me just...

Okay, what was I saying again?

Right. Keeping it short.

There's probably no one out there reading this anyway, what with me dropping off the face of the earth and all. I mean really; out of sight out of mind isn't just for babies. And that's really fine. Because as I've repeated ad nauseum, this writing thing, it's for ME. If someone reads something I've written and it means something to them, well that's a bonus. But the reason I started this blog in the first place was for me to get things out of my head. There's been none of that for the last several months, (MONTHS!) and that's becoming an issue. Because what stays in my head, well... it STAYS in my HEAD. And inside my head? Let's just say it's dark in there.

So - back to keeping it short.

It seems the only way I can keep things short is with bullet points. If I think in paragraphs I start to go off in tangents that I then edit for hours to come. So I think for today bullet points are the way to go. First, a quick update on everyone else in the household, in no particular order:

Jete - Stay-at-home dad extraordinaire for nine months now. Things are going well, but he could stand to get out of the house once in a while. Unfortunately, he hates everything I've suggested from poker nights to kung fu classes. Maybe there's a good bowling league around?

CG - 3-and-a-half-year-old, and good at it. This an interesting age. They kill you with WHY's? and NO!'s and I'M STUPID AT YOU, MOM!'s, and then kill you with sweet innoncence and kindness a moment later. No longer a baby; I can see "kid" right around the corner.

Em - 8 months old. EIGHT. Gummy grin has been replaced by five teeth already. You know those rumors about babies who have big doe "cartoon" blue eyes and fat Gerber-quality cheeks, who sleep though the night from six weeks old and are happy all the time? THEY'RE TRUE.

Ethan - Oh, Ethan, you're a dozen posts unto yourself. All in all, he's doing well, with a bit more drama over the past year than we'd have liked. Changes to his seizure treatments, pneumonia scares, new body jacket, AFO runarounds, insurance changes - AGAIN, and did I mention the sleep study? The biggest issue on the horizon is another hip surgery. Unfortunately, his right hip didn't set as well as the left during the major surgery he had three years ago, and it's displacing. We'd let it be for a while, except he's starting to be uncomfortable during range of motion, so it's something we'll have to address in the next six to nine months.

Me - Yeah, well, it's all about me, isn't it? In case you forgot, I'm both the special AND the needy around here.

I'm doing better now than I was a few months ago. Life, PPD or PTSD; I'm never really sure. What I'm trying to accept is that a big part of what's wrong with me today is tied to my experiences six years ago. I'd love to shrug it off, but I just can't separate from that. I have dreams reliving my emergency surgery. I get a whiff of that horrible medical latex and I'm back in the NICU, at his incubator, waiting for an update, trying to figure out what went wrong.

So much about this time of year brings me back; the cold, wet dreariness day in and day out. The lack of warmth, and sunlight, and hope. I was on bedrest in December, he was born in January, and came home in February. Every year since, the winter has been hard. Add in the post-partum/post-nursing hormone shifts, a few viruses and a lack of sleep, and it's downright ... well, depressing.

In my experience, I've found both depression and anxiety to be diseases of selfishness. When I'm most depressed, most ridden with anxiety, all I can think about is me. Woe is me. What's wrong with me? I hate me. Everyone else hates me... You get the picture. As a result, everyone suffers. I'm a rotten friend, a bad wife, and a mediocre mother. And I'm not too nice to myself either.

The good news is, spring is coming. I'm taking steps to make things better, to be selfish in a healthy way. Writing here is one of those steps. I'm going to try to write more often (maybe once a month?) for my own benefit. I have a feeling I'm going to need it over the next few months.

Until then - as CG insists every time he has a cup: Salud!

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.