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.

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.

Driftwood

You know how things are with old classmates, or former co-workers?

At one time you were close, forced together in a daily routine that kept your orbits circling round each other. You knew what they ate for lunch on Tuesdays, what their favorite kind of music was, and how they always got annoyed by calls from their mother. If they changed up their routine with a new haircut or sweater, you knew the moment it happened. They didn't need to notify you of the small changes, never mind the major ones, because you were always there, sharing the experience with them, watching from the sidelines.

But things changed. You graduated, got a new job, moved to Kansas, and your relationship had to change. You swore you'd stay in touch. You'd call. You'd write. And you did... for a while. Then it took a few weeks longer to return that email or phone call. Next time, a few months. "We'll get together in the spring," you promised, until summer passed without a single contact. You got busy. You got distracted by your own joys, your own sorrows, and forgot to reach out. Seasons went by. Years. You drifted apart.

From time to time, you think of them, and want to reach out. But now, there is a gulf between you. Not only time, but life has passed. So many things have happened in the months and years since you last spoke. You're overwhelmed by how much you'd have to explain. Is it worth that amount of effort, to rekindle a once comfortable relationship? Where would you begin?

And then you think - Maybe it isn't worth it at all. Maybe we don't have anything in common anymore. Maybe I'm not the same person I was when I knew them anyway. Maybe it's time to just let the relationship go, to accept that it's over.

***
I was reading through old emails last weekend, trying to clean things up and clear out virtual clutter. I saw emails from old co-workers and friends I haven't spoken to in years. Some, almost a decade. Most don't even know I got married, never mind the fact that Ethan exists. They don't know all I've been through in the past few years. Frankly, I don't feel like bringing them up-to-date. I would need a week to bring them up to speed on the past year, never mind the past five.

Lately, I've felt similarly about my blog. It's been six weeks since I last wrote, and it seems like an eternity. I have no energy to read or write or do anything lately. When I can spare a few minutes, do I really want to write a quick story without explaining the context? There is so much I want to say, but as more time passes, there are more gaps to fill in. It overwhelms me, so I give up and go to sleep instead.

Yes, things are fine. There are no major catastrophes or "miracles" to share. Just little things. The daily happenings from a house of chaos.

Thanks to CG's daycare, we've all been sick for about two months straight, including Ethan. Still, he started school and seems to like it. His seizure and GI meds have all been changing. He had a sleep study done. I think his hips are getting worse. Again.

CG graduated from Early Intervention and no longer gets speech therapy. He's sleeping in a big boy bed every night now, but the pacifier is a whole other problem. With all the change in the house, he's become aggressive with his friends at daycare.

We had our 19 week ultrasound, and things went okay this time. We found out the gender of the baby. A week later, I had a bad experience with a different doctor and lost what little confidence I'd mustered up. I'm still being watched like a hawk, which makes me feel better and worse all at the same time.

I've been up, but mostly I've been down. I've gone back into therapy again. I'm trying to climb up from this hole I've fallen into. I'm trying not to let the past drag me down. I'm trying to focus on the little joys, and not get tangled up in the big worries. I'm doing all I can to hold onto hope when the echo of experience tells me not to believe in happy endings.

I miss hope. I miss being able to breathe through my nose. I miss having energy and passion. I miss reading and commenting on blogs. I miss writing. I miss using my blog to get things out of my head, to talk through ideas and share feelings and find out I'm not so alone.

But I know that I needed this break from writing. As I told Bad Experience Doctor, I know my limits. I work full-time. I have a severely disabled child. Ethan has had almost a dozen doctor's appointments and lab visits since January. I've been going to prenatal appointments every other week, plus other appointments that have nothing to do with pregnancy. Plus, I have a husband and a toddler who need their own time and attention. I'm doing the best that I can. And I have no regrets.

Except... maybe, staying up until 11:30 and rambling for a few dozen paragraphs probably wasn't the best decision.

But other than that. Definitely, no regrets.

More to come. At a more reasonable hour, of course.

More Gray. And Maybe a Few Other Colors.

Even gray comes in different colors.

I haven't been able to get Ashley's story out of my head since I first heard about it last week. I keep mulling it over, thinking and rethinking it, wondering what I would have done in the same situation. Because of course, even though my son is similar to Ashley, I'm not in the same situation. No one is. Just as no other parent is facing exactly what we are facing with Ethan.

I'm fascinated by the hundreds of comments I've read on message boards and blogs. There's no denying that Ashley's story has resonated with people. Which, no matter how you feel about the story itself, is a good thing. People are discussing the care of disabled as a major headline. For a few minutes, parents of severely disabled children are the experts. They are being sought out for their opinions and experiences. To share their child's stories. People are acknowledging how lacking our nation's support system is, and demanding changes so no other parents have to turn to such drastic measures again.

And frankly, I think it's about damn time.

For the most part, the only people who think about the disabled are their parents and families. I'll be honest - until Ethan was born, I never once thought about how people manage to care for a disabled child. I honestly assumed that anyone who was disabled, especially children, automatically qualified for money from the government. That you got Social Security benefits, assistance for in-home nursing care, and free health insurance.

Yes. I was that ignorant.

The truth is, disabled children do not exist in the government's eyes until their 18th birthdays. Until that point, they are considered the parents' full responsibility. There are no additional benefits or support available unless their parents are extremely poor or until the child turns 18. And even then, there isn't much worth calling "support". Extremely limited funds. Few available daycares so parents can work full-time. Limited public facilities that make true mainstreaming possible. I don't think the average person realizes this until it hits them personally. But maybe, through some of these conversations, they're starting to learn now.

However, while I'm hopeful Ashley's story may effect awareness, I got a bit discouraged when I realized the only blogs I saw discussing this story were medical blogs and parents of special needs children. It has not spread much farther than that. (Granted, I do not read every blog that exists. And I did find this one entry at Wonderland - Finslippy's second home - but it seems to be in the minority.)

My family members heard of the story, but hadn't listened closely and weren't really sure what it was about. Coworkers never talked about it at all. When I brought it up in conversation one day, none of them had even heard of Ashley. They had however, heard and chatted about Howard Stern's recent raise, the blizzards in Denver, and the new plans for Iraq. This just reinforced my belief that Ashley will be a passing interest, taken over in a week or two by a new "headline grabber". Only time will tell.

In the meantime, I encourage all of you to read about this story. To think about it, and more importantly, talk about it. Even if you think you've made up your mind, you might want to seek out an opposing opinion, just to get another point of view. There are many good thoughts out there that I think are worth reading - even those I may disagree with. If you're looking for more insight, check these out:

• Carrie passed along this entry from Disability Studies, Temple U in the comments.
• Dream Mom has tackled this topic twice so far; Part I and Part II.
• Ben and Bennie added their two cents in a few different entries as well.
• The Gimp Parade has several great posts, plus many links to other discussions about Ashley.

As Dream Mom says: "You Could Be Next". What many people don't consider is that we all have the chance of becoming disabled one day, or having someone close to us become disabled. This topic does not just affect "those kids" or people who care for them. It affects every human being. We are all equally fragile.

***

I wanted to respond directly to some of the questions that were posed in my last entry:

becca asked: Mete - can you not get some bathtime-related assistive tech. for Ethan?

Simple answer: "Yes". Real answer: "Yes. With lots of money."

Our bathroom is the size of a small closet. There is no way we could comfortably get a lift in there to use. Besides, the door is so narrow that we couldn't wheel him in or out of the room anyway, so he'd have to be manually moved from the lift back to his chair in the other room. We'd have to purchase the lift itself (relatively expensive) and do major renovations to make our tiny bathroom work. And none of this would be covered by insurance, because of course bathing is NOT a medical necessity. At least in the eyes of insurance companies.

Right now, our current system works, using the bath seat we purchased (out of pocket) last year. We know there will come a day when this won't work anymore, and we have a plan in place to deal with that. Frankly, we are outgrowing our current home in more ways than this, and we hope to move in the next few years. Even if we don't, we would plan to build a new bedroom/bathroom area to support Ethan and his needs down the road. At that date, we'd look into the lift vs. roll-in shower solutions.

But honestly, my point in Gray was not to focus on how difficult it is for us to bathe Ethan. Rather, it was to say that Ethan is losing more and more of things he enjoys as he gets larger. His mind is that of an infant, and as all infants do, he loves to be held, to be carried, and to splash freely in the bathtub. But as he grows and gets bigger, I watch him losing out on those things that he enjoys so much.

Yes, we can find alternate solutions. There are ways to adapt, and we employ some of them today. But it still makes me sad that he is losing these few pleasures he has. I honestly believe he was more able to enjoy life at the size he was two or three years ago than he is now. And it will only get harder. Our holding, carrying, (and Jete's rough-housing with him) has grown very limited as his size increased. One of the only ways we can communicate with him is through touch. While I can sit beside him, and hug him, and hold his hand, I still feel he is becoming more and more isolated from us.

I just wanted those who quickly called these parents selfish and evil to think about that for a moment. Think about your child as a baby, and think of never being able to hold them or dance with them or bounce them on your knee. Think about being forced to move them only from their bed to their stroller (or wheelchair) and back again. Think about how that makes your child feel to not have that additional contact. When I thought about my own situation, I could relate to some of their motivation, even if their actions were less relatable.

***

Liza asked - Are you considering seeking a similar course of treatment for Ethan?

No. We aren't.

Obviously, my situation is very different. First and foremost, Ethan is a boy. We will face different challenges as he goes through puberty than if he were a girl. If he were, I still don't think we would take such drastic measures. He's been through so many surgeries and medications, I can't imagine adding more to them right now.

That said, if he were a girl I would probably make decisions as issues came up. If "she" had problems or discomfort with menstruation, I would have no issues with using medications to handle or stop that. If "she" developed a large chest, I'd have to see how comfortable that was with the stroller and stander and look into possible reduction (which several adult women in my family have opted for). I would not be opposed to making my child more comfortable, in the least invasive methods possible.

I don't believe the surgeries Ashley had were that extreme. But if it was something posed for my child, I might have issues with the permanancy of them, and the fact that they were pursued with no real proof that they would help. Yet, there are many who believe these surgeries were not only wrong, they were "barbaric". Some of them would oppose even the lesser measures I might take. They don't believe you should intefere with a healthy body's "natural" processes. Personally, I believe that borders on an argument against any medical intervention.

Of course, I come from a different place. We put our three year old son through a 10 hour surgery, cutting and reforming his bones, slicing into the tendons in his groin and legs, trapping him in a full body cast for three months. All for something that might happen. His hips were displacing, and he might get arthritis in those joints someday. Then again, he might not. We knew that from the beginning. Someone - a purist, perhaps - might say that surgery was unnecessary. Barbaric, even. It's all a matter of perspective.

***

In a week of thinking, reading and analyzing this story, I'm still not sure exactly how I feel. Many things the parents did and said bothered me. The term "pillow angel" strikes an uncomfortable chord. I don't like the fact that the photos on their blog give privacy to everyone in the family except Ashley. And I find the arguments that they did this in part to prevent sexual assault weak, especially considering how many pedophiles are out there.

However, I do believe they love Ashley. I do believe they had her best interests at heart. And I do believe they had the full backing of medical and ethical experts. I do not believe they "mutilated" her as some are claiming, nor do I believe they are abusers or criminals as others say. And so, I find myself defending them.

But really, I feel as though I'm defending myself. I'm defending the right of a parent who knows and loves their child to be able to act in their best interests. After all, we are Ethan's voice. We are the only ones who know him at his core - his needs, what makes him happy, what causes him distress. It frightens me that someday, because a stranger disagrees with us, we may lose the right to decide what is best for him. Ethan's voice would be silenced.

***

Today is Ethan's birthday. He turned five. In five years, he has been through so much, and I'm sure the future holds much more. Sometimes I think we're up to the challenges, but other days I'm not so sure. I worry about the future. Will he stay healthy? Will we stay healthy? Will we continue to be able to care for him? Will our insurance woes get worse? Will he need more surgeries? Will he be in pain? Will he be happy?

We can't answer those questions. We can only do our best to make today the best it could be for Ethan. I think of Ashley's parents, and I can't help but believe they are trying to do the same for their daughter.

I wish there were more easy answers. I wish no one had to make decisions like this for their children. I wish things weren't so damn complicated. I wish the colors on the horizon always held more blue, and less gray.

Gray

I don't know how I feel about this. (More info here.) I really don't.

You'd think there would be a simple response. "It's wrong!" "It's right!" But it is not that simple. Nothing about this kind of life is simple.

There are those that say it's ethically questionable. I can totally see that. Putting a child through unnecessary surgery? Messing with a body's right to grow up? Forcing them to be a "child" forever, even into adulthood? It's unnatural. In fact, it's immoral.

Maybe.

Ethan is already 50 pounds at practically-five-years-old. A SOLID, dead weight, 50 pounds. I can barely lift him now, and Jete has to do all major maneuvering. I can't give him a bath because I can't safely get him in and out of the tub.

Soon, he won't be able to have baths anymore. He loves baths. He loves being submerged in the warm water. Nothing relaxes his tight muscles like a warm bath. But a 75 pound (wet) child can not be safely transported in and out of a tub. He'll need to move to sponge baths. To roll-in showers where he is cleaned but not bathed. Showers that do not give him the feeling of floating; of being free.

And I'm pretty sure that, in a few months, I won't be able to hold him anymore.

Ethan is my baby. He is practically-five-years-old, but developmentally, he is a baby. He will never be more than six months old. He loves to be held. I love holding him. And I know I won't be able to do that ever again. I can sit beside him, or lay with him on his bed, but never again hold him in my lap and just cuddle him. He'll be so difficult to move that he'll mainly spend all of his time in his wheelchair or on his bed, physically separate from the rest of us.

Now. Tell me again what's moral and what's not. I dare you to.


Updated to add: This was featured last night on Nancy Grace. I'm normally irritated by this show in general, but I could barely sleep after watching it, I was so angry. No impartial information here; we all know what we're SUPPOSED to think after watching this show. It must be nice to be so perfect and self-righteous.

We Wish You a Scary Christmas*

Updated to add: I'm starting to feel a bit guilty. So, lest anyone accuse me of worrying them needlessly, or worse, using scare tactics simply for the ratings (ha ha), let me say now: Fear not. Everything turns out okay by the end of this post. Unfortunately, Life doesn't give the benefit of a "skip to the end of the story" to see whether or not it has a happy ending. Hence, the scary week I detail below.

-Mete

***

Our Christmas weekend started out with the traditional gift of vomit. CG brought yet another illness home from daycare and christened our living room rug just before bedtime. We thought (hoped) he had just eaten too many holiday goodies at the daycare party. But this repeated two hours later, and then again an hour after that. and again. and again...

Saturday, the vomiting finally stopped. Jete and I had gotten almost no sleep the night before, trying to prevent cleaning every rug and blanket we owned. Finally, late in the afternoon, I got motivated to start prepping for the Christmas Eve party we host for Jete's family. I was up late into the evening, baking cookies and preparing as much ahead of time as I could.

Sunday morning, Christmas Eve, I woke up eager to get an early start. I slipped into the bathroom before tackling the rest of the baking and cooking I had on my list. I glanced down at the toilet paper for my usual half-hearted inspection and my heart stopped. Spotting.

The spotting was pink, but naturally, I was still concerned. I called my OB and left a message for the doctor on call. As I sat on the couch waiting for the return call, I twirled my hair and stared into space, thinking. Would they do an ultrasound to confirm the inevitable? What about the 15 people coming to my house in a few hours? Was this some kind of sick joke? Did I really need to find out I'm having another miscarriage on Christmas Eve?

Dr. I. called me back. I explained what I saw, and he asked if we had heard the heartbeat in the office yet. Yes, I told him, we had seen it on ultrasound twice. "Well, then. You're usually safe once you've seen the heartbeat." I laughed on the inside, a bitter laugh. Yeah, "usually" safe, except for that whole last time when we saw the heartbeat twice and it DIED ANYWAY.

He was understanding about my concerns. "Really, it's probably nothing. And unfortunately, there's nothing we can do about it even if there is an issue. I don't see any reason for you to spend the holiday at the hospital. Call if it gets any worse, or come in first thing Tuesday when the office opens, if it makes you feel better."

After checking, AGAIN, about a hundred times, I decided it might not be as bad as I originally thought. He was probably right; it was probably nothing. Women spot all the time. No point in getting all worked up yet. I'd just go on about my Christmas business. Nothing takes your mind off an impending miscarriage like assembling seven cookie platters.

A few hours into my effort, my father called. "Did Sete go to the hospital?"

My sister Sete, a Type 1 diabetic, had been having some blood sugar issues. Her readings were really high and no matter how much insulin she took, they weren't going down. Her doctor finally recommended she go to the local emergency room to be treated. My mother had gone there with her.

Everyone insisted I finish my work for the party. Most likely, they'd get things under control in a few hours and send her home. There was no reason for me to sit there with them when I had other things to do. Throughout the afternoon, I got periodic updates from my mother. In the meantime, I was a nervous wreck. I distracted myself by baking, helping Jete clean the house, watching the boys - and trying not to go to the bathroom. AGAIN.

Evening came, and the party prep was basically finish. Just five minutes after the first guests arrived, my mom called me again. They were admitting Sete to stay overnight. She was doing okay, but the treatments they had tried weren't working like they'd hoped. They didn't want to send her home until everything was completely stable.

I felt terribly guilty for not going to see her at the hospital. But she called once she got to her room and told me to stay home. She was exhausted and was just going to rest anyway. I went on with the job of hostessing, but once things got rolling, I kept taking opportunities to escape to my bedroom. Laying on my bed, I'd watch Miracle on 34th Street, and zone out for a few minutes. I was having a really hard time being "on" with the guests. I just didn't care.

Finally, around midnight, after all the guests had gone home, Jete and I slunk into bed. Less than an hour later, CG woke up, coughing and crying for me. As soon as I stood up, I knew the spotting had changed. I went to his room to comfort him, then quickly went into the bathroom and turned the light on. When I checked, the light pink spotting from earlier in the day had changed to heavier, bright red, blood.

I got back into bed with a thud, and Jete asked me how CG was. "Fine," I told him. "But... the spotting's worse." He rolled in my direction and sighed. "But there's nothing we can do right now, right? Whatever's gonna happen will happen?" I nodded. Within a minute, he was snoring again. I stared at the ceiling.

Finally, I fell back asleep again. This time, we were both woken with a start around 3 AM. Ethan was crying. We both rushed to his room to find him completely congested. His nose was blocked with mucus. More frightening, he sounded incredibly wheezy. He seemed to be gasping to catch his breath.

Like a newborn, you can't explain to a severely disabled child how to cough or blow their nose. We tried a few different positions to make him more comfortable - holding him, rocking him the recliner - but nothing worked. Finally, we decided to take him into the bathroom and give him a steam treatment. (Thank you, 45 viewings of Terms of Endearment, for the idea.) I sat on the bathroom floor next to Ethan until the hot water ran out. He was breathing easier. Jete set him in an upright position on the recliner and set up his own sleeping quarters on the couch to be near him.

When morning finally came, I was beyond exhausted. The Christmas gifts remained unwrapped in my closet. As time was short, I had planned to wrap them first thing Christmas morning before CG got up. But now, my heart wasn't in it. He had gotten so many gifts the night before, I felt only a little guilty. But my idea of a nice Christmas morning - just the four of us, opening gifts - was out the window.

My parents came over in the early afternoon to watch the kids so we could go visit Sete at the hospital. She was doing much better by the time we got there. They had given her with antibiotics for an infection that most likely caused the issues. Her blood sugars were finally under control after being on an insulin IV overnight. Assuming everything stayed stable once she was back on her pump, there was no reason she couldn't go home that day. She eventually got discharged around 10 PM Christmas night.

When we got back home from visiting, I asked my parents to take CG to the Christmas meal at my grandparents' house. We had planned to take Ethan, but his illness obviously changed things. I was too tired and distracted to socialize, even with my own family. But I wanted CG to enjoy Christmas as much as he could, opening his gifts with his cousins. They left with him, and I took a much needed nap. It certainly didn't feel like Christmas.

By Tuesday morning, I was an emotional wreck. I called the OB office at 8:30 exactly, as soon as they opened. I needed to be seen, ASAP. I was bleeding ("spotting" didn't seem strong enough), and I needed to be checked. They told me I could come in immediately.

When I got to the office, there were already a few other women in the waiting room. I gave my name at the desk and sat as far away from everyone else as possible. Two visibly pregnant women started a conversation across the room. I was stuck directly in their path.

"When are you due?"

"February."

"I'm due in the middle of January. But hopefully they'll take this baby sooner, 'cause I can't be pregnant no more!"

"Tell me about it! I'm so sick of being pregnant."

"Do you know what you're having?"

"A girl."

"Me too! I think it's the girl pregnancies that make you more miserable. Even after they're born. They're so CLINGY. Which baby is this for you?"

"My sixth."

"SIXTH? Wow!"

"Yup. After this, I'm done."

"Me too! This is my second, but I'm all done after this. I'm not havin' no more babies. I want my body back! I want to be able to wear cute clothes again!"

I glanced at the two of them. As tears sprang to my eyes, I looked away. I hated them. Two women who were due at nearly the same time that I should have been. I couldn't help but think... in nine months most women have a single baby. And here I was, most likely losing two in the same gestation time.

The doctor finally called me in. She asked me about my symptoms ("Spotting, then BLEEDING.") and what the status was at that moment ("Well, it's turning brown again. But did I mention the BLEEDING? The RED bleeding?") She got out the doppler thing and started looking for the heartbeat. And looked. And looked. I stared at the dots on the drop ceiling, waiting for her to give up already. We all knew where this was going.

After about a minute of searching, I heard it. The galloping horses. She turned off the doppler. "Well. Heartbeat sounds fine. 152." I looked at her, disbelieving. "Are you sure that wasn't mine?" She laughed. "No. Yours was around 90." She moved on to check my cervix. Long and closed. Everything looked okay.

As I sat up, she gave the usual explaination. Many women bleed, and many times we don't know why. But everything seemed good so far. I should have an ultrasound and go from there. Since I was already scheduled to come in the next day for the nuchal check, I could just keep that appointment.

For the next 24 hours, I was more than skeptical. I would not be lulled into a false sense of security. Just because it had a heartbeat on Tuesday didn't mean it would still have one on Wednesday. Wait and see. Wait and see.

Wednesday, I had my ultrasound. Amazingly enough, it went fine. There was an appropriately sized (13 weeks, 2 days) creature. There was a heartbeat. There was no visible sign of why I had been bleeding. She was unable to get the nuchal thickness because it was moving around too much. Which didn't bother me, since we decided to skip any additional genetic testing. I want the answer to only one question: "Will it die?" If the testing can't tell us that with 100% certainty, it won't change anything.

The bleeding has basically stopped now, although I still get the occasional pink or brown smudge just to keep me on my toes. The nausea is consistent, my boobs hurt, and I'm enjoying round ligament pain whenever I do too much. I guess those should all be good signs. Still. I'm not holding my breath. Two more weeks until my next appointment. Who knows what can happen by then?

But I'm not going to worry about that now. Not until next year.


Happy New Year, everyone. I sincerely hope 2007 is a better year than 2006 was, for me and for all of you. I'm thinking there's a chance it will be. I mean, there's a seven in the number. That's gotta be good, don't you think?

(* Let's just hope the next post isn't titled, "...And a Crappy New Year".)

Coming Out Of the Dark

I lifted my head off the ultrasound table and turned to Jete.

"Well. It isn't dead yet. That's something."

He smirked. "You optimist, you." We both laughed.

Dr. I. came back into the room with the tissues he'd been searching for. "Hey. No laughing in here."

"Sorry," I said, as I wiped the goo from my stomach. "I'm telling bad jokes."

Jete stood up with my coat. "Dark humor."

I mentioned the joke again that night at a friend's house. No laughter then, just sympathetic winces.

Guess you had to be there.

***

Things are progressing so far, I suppose. I'm around 11 weeks now and I've had two quick ultrasounds just to make sure there's still a heartbeat. No science involved with these; they're basically for my own peace of mind.

After Christmas, we go in for the nuchal screening and some added bloodwork to look for genetic defects. Since we've got nothing else to go on, they're working with the assumption that the miscarriage was caused by a genetic problem. They want to be able to tell me as early as possible if there's a chance things might be heading down a similar path.

Although, honestly, I don't think we would change our course of action if there was a "possible" genetic problem. Most of the positives are false results. And even if it was a true issue, what would we do? If something was 100% fatal, with 100% certainty, we'd probably take action. But the gray areas?

Every situation is different, and I can totally understand why someone else would feel the need to take action if their child had a genetic problem and they knew early enough on. But for us... how can have a problem with a disabled or handicapped child? Especially when we already have Ethan? What does that say about him?

Of course, this is all getting way ahead of myself. Let's just wait and see if it will still be alive at the next scan. Then we'll take the step after that. No point in counting my embryos before they hatch.

***

Your comments on my last post made me cry. Seriously. Granted, it doesn't take all that much to make me cry on a normal day, never mind when I'm newly pregnant, but still. I was touched.

I've been watching people lately, online and in real life. I've started to face that the hard edge human beings have, the one that ultimately causes war and strife, runs deep. As a child, I was an idealist, using each birthday candle to wish for World Peace. I hoped that, over time, wars would end around the world. Girls would start being nice to each other on the playground. People would stop being so damn MEAN all the time. After ten years or so, I realized my wishes were never going to come true, so I started using them on more selfish things, like a nice boyfriend to come along.

As I've grown up, I've realized it's never going to stop. As long as someone in the media is mocking Britney Spears or someone at work is gossiping about so-and-so, there will be others to join in. The mobs will gather, the rocks will be thrown. The mud keeps slinging, and it's getting deeper every day. We're all drowning in it.

It makes me really sad how cruel people can be. I try hard to make a conscious efffort not to participate in it, but it gets me sometimes anyway. It makes me wonder if it's not better to just go back into your home and lock the door, and hide from everyone. Leave all the ugliness Out There.

But I've also come to understand that it's not that simple. If you shut yourself off from people completely, you miss out on the goodness they can offer: the kindness, support and good will people can display when they want to. Like your comments on my last post, or the love the world poured out to the Kim family this month. There's got to be a little hope for the world if we can display that much goodness.

***

I'm sure this post seems disjointed, but inside my head it makes perfect sense. Maybe I'm a sentimental pregnant woman, or maybe all that Christmas music is making me sappy. But for the first time in a long time, I'm starting to decide that things don't have to look all that bleak. I'm allowing myself the hope that this new year could be a slightly better one than the last, both for the world at large and my own little corner of it.

I sincerely wish you all a tall glass of Hope this Christmas as well. It's hard to find, but it's delicious.

Things Left Unsaid

First: Ethan is fine. That boy is a wonder. He sails through surgeries and medical procedures and keeps on smiling. He frequently inspires me to stop being so damn whiny and mopey. But he isn't ready for his canonization yet as far as I can tell, because he's nowhere close to completing that miracle.

But, yes. He's doing well. Thank you for asking.

Oddly enough, the worst part of the whole surgery ordeal was our hotel. It's a long, rambling story - especially the way I tell it - so I'll leave it at this for now: I never lodge formal complaints about bad service, never-ever-ever, and yet I've written a three-page letter to the manager. I'm sure I'll bore you with all the gory details eventually. But for now, I'm tired.

I feel like I've been tired for more than half of this past year. And for much of this time, I've been hiding it. I'm tired of being tired. And I'm tired of hiding it. I'm tired of pretending I'm fine all the time so I don't have to explain the things left unsaid.

When I wrote this post, after much debating, I took something out of my first draft. The original last line of that entry was: "Wednesday morning, I got my period." I took it out because, eww, gross, telling random strangers about your period? Why would they want to hear that?

But yet I hated taking it out. I felt it was important to the story. For four weeks, I was on a hormonal rollercoaster. Exactly four weeks after the D&E, I suddenly felt human again, and four weeks and one day after, I started my period. In my opinion, that sentence was key to everything else. It explains why I found solid ground, seemingly out of nowhere.

When I wrote this post, I was leaving something out. I didn't mention that, not only was it eight weeks after my D&E, it was nearly four weeks since my period. More importantly, my cycles are normally shorter than four weeks. If my cycles were back to their usual length and routine already, I was already a day late for my period.

But I ignored it. I focused on the miscarriage and my recovery from it, and pretended I wasn't wondering at all about the symptoms I had been having. Even though they were constantly on my mind.

And when I wrote this post, I talked about Ethan's surgery and my recent busy-ness. I mentioned my recent fatigue, but didn't explain it. Just left it out there as an excuse for my sudden drop off the face of the earth.

Until now.

I'm tired because I'm pregnant again.

No, we didn't plan for this to happen so soon. My doctor recommended three months after the D&E before we tried again. But we weren't "trying". I wasn't sure how long it would be before I'd be ready - emotionally, mentally, physically - to try again. "Trying" was the last thing on my mind. This pregnancy, like my first two, was a surprise.

I know with that statement I have just moved into the category of Annoying Girl Who Has Multiple OOPS Pregnancies And Brags About It, even though bragging is the last thing I'm trying to do. I'm almost ashamed by our freakish fertility. I have followed stories of women struggling with infertility, online and in real life. I know how painful it can be to watch others try and get pregnant easily, never mind being caught by a surprise pregnancy. Never mind being caught by a surprise pregnancy, THREE TIMES.

(I don't say "pregnant by accident", because none of my children were accidents. We wanted them, and welcomed them, even if they caught us off guard.)

But yes, I'm pregnant. I'm not holding my breath that anything will come of it, but there it is. It's something that has been going on in my life that I've left unsaid, even though it's affecting everything else. I have no focus at work. I'm exhausted. I have no energy to do anything at all. I barely muster up enough energy to read other blogs, never mind write in my own. This post alone took three days to finish.

I have a lot of feelings about this pregnancy, good and bad, and I'd like to get them all out of my head eventually. I'm about 9 weeks now, and hope to get out of the first trimester exhaustion soon. Between the last pregnancy, the in-between hormone shifts and this new one, I feel like I've been in the first trimester for six months now. It's getting old.

There has been very little joy surrounding this pregnancy so far. The reaction of most of our family and friends was something like: "OH." I can't blame them, since it was pretty close to our own reaction. No one wants to get too attached just yet. I think our family is afraid to get our hopes up by showing any excitement.

I had an early ultrasound, at only five weeks. There was a properly sized sak and - as expected - no heartbeat yet. But even seeing a heartbeat would have been no consolation to me. I've seen one before and it didn't mean a damn thing.

My symptoms so far have been a constant mild nausea, supreme bitchiness, and fatigue. Also, a mild depression that won't seem to lift. It's been a rough few weeks. There has been more than one moment when I thought, "If it doesn't work this time, I give up. I don't think I can go through this again."

But I'm trying not to think about that too heavily right now. I'm just trying to get through today. Then tomorrow. We'll see what happens after that.

This morning, I have my first official prenatal appointment. I'm sure it will be very similar to the LAST first official prenatal appointment I had - talk about the treatment plan, maybe schedule some additional ultrasounds. Poke and grope and measure. All the usual fun stuff.

And then, tomorrow, we go back to Boston for Ethan's post-surgery follow-up. We're registering him for school the day after that. CG starts daycare next Monday. And on, and on, and on.

I hope you all had a wonderful Thanksgiving. It's been a hard year, and was a stressful Thanksgiving, but deep down, I knew I had a lot to be thankful for. Even if I left most of it unsaid.

News Flash

This may come as a bit of a surprise. But... did any of you know - it's the MIDDLE OF NOVEMBER?

I'm not joking. I sweartogod.

The past two weeks have gone by in a blur of business and busy-ness. I started a long and rambling Halloween post (shocking, I know) but when I actually had the time to sit and write, Blogger was giving me heaps of trouble. By the time it seemed fixed, I was back in busy mode. Besides, at this point, Halloween is so last month.

I've been busy to the point that I'm barely keeping up on my reading. This is the first night in weeks that I've been up past ten, and you should know by now that 10:00 PM is the threshold for Mommy time in this house. CG goes to bed at 8:30 or 9:00 and Ethan and Jete retire around 10. As soon as that happens, the computer and the TV both go on, and I enjoy the familiar humming of technology.

Lately I've been too tired to even turn on the PC many nights. When I do muster up some energy, it's just a quick check on a random handful of blogs. MAYBE I'll muster up a lame comment or two, but no way do I have the energy to write a real entry on my own.

I'm forcing myself to put clear sentences together now because I'm sure I'll be offline for even a little while longer. Our main focus right now is Ethan's upcoming surgery. I call it Number Two. (Get it? Ha. ha. HA.) Partly because it's his second surgery this year, Number One being back in August. And partly because it's Part II of the hip-work he had done last March.

Compared to the ghosts of surgeries pasts, this is supposed to be a small one. Jete, Ethan and I head to Boston on Tuesday, and if all goes well, we should be home by Thursday. The surgery itself should only take about two hours. No casting. We're keeping our fingers crossed that it will be a nonevent.

It's funny how your first born child - a mere four years old - can be having surgery and yet, it isn't that big a deal. Naturally we're concerned, and we'll be worried sick for those two hours, but we're relatively calm compared to the last time around. We went for our pre-op appointment last week (an entry in itself) and despite the torrential downpours, five hours spent waiting to see doctors, and five hours spent on the highway, it was almost ... relaxing.

(I said almost. We're kooky, Jete and I, but not crazy.)

We'll be working of course, right up until the last possible minute, since we've got zero vacation time left for this luxurious visit to our state's capital. Somewhere in there I'll have to pack. And get referrals. And notes to the hotel to prove it's not a pleasure trip, so please give us the piddly 5% discount, okay? And spend time with CG, who's staying at home and will most likely punish us for weeks to come for abandoning him.

Please. Try to contain your jealousy. You can't all live a glamorous life like me. I'm just lucky, I guess.

8 Weeks (Or 28 Weeks. Whatever.)

Today marks a milestone. I've been holding my breath for eight weeks now, waiting for today to come.

Since I left the hospital eight weeks ago today, I had this date in the back of my mind. As I gathered my things to go, I asked the nurse what to expect next. "They're sending the material away for a genetic workup. It should take 6-8 weeks for the results to to come in. If you haven't heard anything by eight weeks, give the office a call."

Eight weeks and no word, so I finally gave myself permission to make the call. The nurse in the office put me on hold while she went to fetch my chart. I listened to soothing music until she picked up again.

"Mete? They got the results back from the genetics lab. Unfortunately, they were unable to obtain a useable cell culture. They couldn't tell anything from the testing."

"Okay..."

"Alrighty. Have a nice..."

"Well, wait. So that's it, right? There's nothing else, right? No other tests?"

"Yes, that's it."

I pretty much knew that was going to be the answer. I mean, it had died at least a week before the D&E, definitely longer. They warned me from the beginning that there was not much chance of getting a valid sample.

I'm not really sure how I feel about this. I'm disappointed. It would have been nice to have answers, a place to point the finger, or something to rule out.

But I'm also relieved. One of my biggest concerns was finding out the gender. It would change things tremendously for me to have that knowledge. With this door shut, it can stay an It. Not a boy or a girl; not a son or daughter. Just a lost possibility that never developed into anything more than a bunch of bad cells.

(Think what you will, but denial's working for me right now. Okay?)

So really, getting no answers is a good thing. In fact, I may have overlooked other positive things that came out of this. I think it's time I start looking on the bright side. Why don't we examine:

The Top 10 Reasons Having A Miscarriage Ain't So Bad

1. You actually fit into - and get to wear, this season - those new pants you bought just before you found out you were pregnant.
2. You get to use up all those dang 'pads cluttering up the bathroom cabinet.
3. Fear and worry + no more baby + ensuing depression = 10 pound weight loss.
4. You don't have to deal with the combination of your major insurance changes coinciding with giving birth and enrolling an infant.
5. You're saving tons on gas money by not having to drive to the OB-GYN as often.
6. You can start drinking alcohol, if you so desire. (So what if you don't want to? You know you could.)
7. Maybe now, the two pregnancy tests you have left from that three-pack won't go to waste.
8. You get a few extra months out of those expensive family photos. And, a few bonus months of only cramming two children into your tiny house and tiny car.
9. The food apathy is finally gone, and you get to experience cravings after all. (PMS cravings, of course: "Salt. Chocolate. SALT! CHOCOLATE!")
10. No more A lot less Slightly fewer mood swings.

See? It's all good. Sheesh. I don't know WHAT I was complaining about before...

A Very Long Post about A Very Boring Topic. Get It?

Growing up, I didn't like autumn. What good is it to a child? Autumn signifies the end of summer. The end of freedom. The end of warm days playing outside until dark. The beginning of school. The beginning of homework. The beginning of responsibility.

Did I say "I didn't like autumn"? Correction: I hated it.

I finally grew up, got out of school and learned to appreciate the fall. Autumn in New England signifies the end of heat waves. The end of oppressive humidity. The beginning of cool nights that welcome sleep. The beginning of amazing displays of color and the true beauty of nature. We chose to get married in the autumn. I realized that it was actually becoming my favorite season. I loved it.

And then, things changed again.

Autumn still stands for all those things I learned to appreciate as an adult. But it also signifies the time of year I hate the most: health insurance enrollment period.

I've whined about health insurance more than once. More than twice. More, I suppose, than any sane person would whine. See, a sane person would GET IT. A sane person would understand that whining and complaining is nothing but a waste of time.

I guess I like wasting time.

I can't help it. Health insurance pushes my buttons. It's one of those things that keep me up at night. We all have them. For Jete, it's where to locate the ceiling fan on our newly refinished porch. That idea will drive him crazy until it's finally installed. Me, not so much. Instead, I'm concerned that we have medical coverage for our toddler and handicapped son for the next twelve months.

(Feel free to debate which of us is the deeper person.)

This time of year, I'm a woman obsessed. I scour websites, benefits fairs and any scrap of paperwork I can to determine which plan I should go with. I don't take this process lightly. This decision will stick with us for the next year. There's no backing out or changing things, short of getting fired, divorced, or having another baby.

Ha ha ha ha ha. HA.

Ahem.

For many people, deciding which insurance to enroll in is as easy as deciding which value meal to order at the local fast food joint. "This one costs $60 a week, but this one costs $50 a week. So I'll get the $50 one." They eagerly sign up for their company's High Deductible Health Plan (HDHP) because, wow, the premiums are so darn cheap. And yes, for people who never get sick, don't have sick children, and don't have to use their health insurance very often, that's fine.

But for the rest of us, it just doesn't work that way.

I'm a little different to begin with. I'm the kind of girl that would rather pay 9 dollars for a quality hamburger than to get one off the 99 cent menu at McDonalds. Yes, you're saving money, but at what cost? What are you really gaining in the long run? Most of the time, you end up with a cold, scrawny, tasteless meal that leaves you hungering for more anyway.

High deductible plans are good in theory. They want us to believe that we'll make "cost-conscious choices" by enrolling in plans like these. Patients will suddenly choose to get the generic drug instead of the costly brand name. They'll pick the cheapest doctor instead of the pricey specialist.

But really, who does this help? The people who suffer under these plans aren't the upper middle class who insist on the brand name purple pills they saw on TV. It's the families, who can't afford the pricey deductibles to bring their children to the best available doctors. It's the sick, who have to take so many medications and have so many tests that they buckle under the weight of deductibles, copays, and coinsurance.

So far, I've been lucky to avoid the HDHP's because we've had choices. But every year, I see more and more of my options being removed. At my employer this year, I have the choice of one high deductible plan ($9000 maximum out-of-pocket per family), one middle of the road deductible plan ($5000 max out-of-pocket per family) and four HMO's.

(Did I mention I hate HMO's too? But I think I'll save that for another post.)

But really, I know I'm luckier than most when it comes to the number of options that I have. Many people have a single take-it-or-leave-it insurance plan, or worse, no insurance at all. Sadly, I'm fortunate to have the six crappy plans to choose from.

Beyond bad choices, the thing I hate the most about health insurance season is all the lying. The distrust I put on every year like hipwaders. "Yeah, yeah, yeah. I'll hardly have to pay a cent throughout the year. I won't even notice the small bills coming in. I'll get great customer service if I have questions or issues."

"Oh, and no one in Washington ever lies."

In the past two weeks, I had to deal with two untruths slapping me in the face, reminding me yet again why I hate this time of year.

The first was when my company dropped my current health plan. I had a sinking feeling last year when they changed things majorly on our prescription plan. I spoke directly to a benefits representative, expressing my concerns that the changes were a first step towards dropping it completely. He told me that they had no intention of doing that. It was one of their most popular plans, and the employees that used it were very happy with it. They would most definitely have that option for years to come.

And then they dropped it anyway.

Lie #2 came from Jete's employer. They shifted his role a few months ago under a different umbrella. They forced his coworkers to sign a waiver about moving into these roles with the promise that everything would stay the same. They would have the same insurance, the same benefits, blah blah blah. NO changes. No sirree.

While the rest of his company was getting paperwork for their annual benefit enrollment, we still hadn't received ours. We got the flyers from the insurers - shiny brochures covered in smiling faces screaming "Health insurance that will make you happy!" - but none of the meat, the premium and copay pricing.

The other night, I went to one of their open enrollment meetings to find out why we hadn't gotten our paperwork yet. The woman very curtly explained it was because he was not covered under the insurance as of the first of the year.

I sat in stunned silence, thinking to myself (but they promised...they said nothing would change) while she explained loopholes and contracts. The bottom line is that, yes, he will have insurance, but no, they don't know what yet. "You'll definitely have something by January 1st." she said, as if that was supposed to be of some comfort to me.

The thing this woman didn't understand is that "something" just isn't good enough. "Something" may not pay for Ethan's surgeries, braces, therapies, multitudes of specialists. "Something" may not pay for his five different prescriptions each month. I need to know what this "something" is, and soon. I need to be able to plan, to compare, to crunch the numbers and figure out just how much this "something" is going to cost us.

But I guess that's just me being crazy.

In the midst of lie upon lie and crappy choice upon crappy choice, I broke down. I started crying in the middle of the benefits fair. I snuck off to the corner to call Jete about it. He listened to me rant and rave for 5 minutes, and finally said, "Okay." Nothing more.

"You're off the insurance, they lied to us, they won't tell me anything, and we have no way to know when they'll make a decision!"

"Okay." And then he proceeded to talk to me about the porch ceiling fan for 17 minutes.

As I hung up the phone, I decided I needed to blog about this. I needed to reach out to the world at large and, somehow, not feel so alone. My family is great, my friends are great, my husband is great. But sometimes, none of them GET IT. They can sympathize, they can say they understand, but they still don't get why I go so crazy. After all, we'll still have insurance. What is there to get so upset about?

Somewhere out there, someone else must GET IT, right? Someone else must know the frustration of dealing with this insurance CRAP month after month, year after year, with no hope in sight? Someone else must know what it feels like to be so tired, so fed up with the lies and bullshit, that they break down in tears in the middle of a convention center? Right?

Or maybe I just need to GET IT, and stop wasting my time whining. At least until next autumn.