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...)

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.

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.

Taking The Next Step

First, thank you all for your thoughts on my "kids like these" post. I really appreciate the different perspectives.

Shortly after our appointment, I mentioned the experience to a friend. She has three kids and dozens of doctors in her mental rolodex. I thought she could recommend a local second opinion, or at least give me an idea about how to find a Boston one. She suggested I call Ethan's orthopedic surgeon to see if he could recommend someone.

But the next day, before I had a chance to call anyone, she called me at work. "Okay. Don't be mad. I did something."

Turns out, her cousin is a nurse at the local surgeons' group. She called her about the situation to get another opinion. The cousin/nurse reaffirmed that Surgeon #1 is an excellent doctor (which I never doubted). But if we weren't comfortable, there is another doctor in the group that we should meet before going to Boston. She knows him personally as well as professionally and he's "great".

Honestly, I don't want to bring Ethan all the way to Boston if it isn't necessary. So we're willing to give Surgeon #2 a chance first. I made another appointment with him next week. If things still don't feel right, then we'll try Boston.

The paranoid part of me has decided I'm probably the talk of the office now. Surgeon #1 probably feels hurt and insulted. They have staff meetings and talk about That Crazy Mother, the one who is so sensitive. From now on, they'll tiptoe around me trying not to hurt my feelings.

I shouldn't care, but the possible sensitive label has been bugging me. I'm sure there are people out there who think I should just get over it already. Looking at his exact words, he didn't say anything improper about Ethan or special needs children. So why did his words sting?

I'm not one to be bothered by semantics. In many ways, I prefer Rob's language - Ethan's brain is broken. I don't feel I'm demeaning him by saying that. I tend to use the phrase "special needs" as a catch-all because it's faster than rattling off a list of medical conditions. And when people talk about Ethan, I don't care if they say he's challenged or broken or disabled or handicapped or special - as long as they treat him with dignity and respect. He is Ethan before any of those other labels.

The reason kids like these bothered me had nothing to do with the choice of words. It was the attitude behind them. As a doctor who could potentially be operating on my son, I needed to feel that he was treating Ethan the individual. That he was looking at him as a whole person with unique needs, different than the next child that crossed his door with Down Syndrome or Autism. Instead, I sensed sweeping generalizations about children with special needs; a group that is as diverse as any other group of human beings.

No matter what, I'll hold my head high when I walk back into that office. I know that I'm doing the best I can for my children. If that means I have to bruise a few egos along the way, so be it. At the end of the day, their safety and well-being is the only thing that matters to me, and I have to trust they're in the right hands. Besides, plenty of other testicles will come along for Surgeon #1 to fix. He'll be fine.

And if I have anything to say about it, so will we.

Kids Like These

This week's episode in our Weekly Doctor Appointment series found us at our local pediatric surgeons' office. Part four of: "What To Do About Ethan's Missing Testicles".

At our first visit, the surgeon had confirmed they were nonpalpable. He sent us for an ultrasound where they had further difficulty locating them. By the end of the 2 hour, 2 tech and 1 Senior Radiologist event, they were pretty sure (not definitive) that they found both of them.

No matter what, they aren't where they're supposed to be.

Back at the office this week, the doctor told us that Ethan needs the surgery - orchiopexy - on both sides. As he explained it, the first, and primary reason, is to "retain sperm production". He talked at length about the biological reason for the scrotum and the delicate temperatures involved and blood vessels and details about sperm supply. The surgery is important to maintain his future fertility. Strike one.

The surgeon explained that the second reason to operate is that undescended testicles lead to an increased risk of testicular cancer. He brushed this off quickly. He explained that the risk for testicular cancer in men is extremely low anyway, and while Ethan's risk is increased, it's still very low. But the goal is to move them down out of the abdomen so if a tumor does grow, it's easier to detect.

(Interesting: The surgery doesn't change his chances for cancer. His risk is increased from ever having had undescended testicles in the first place. It stays the same after surgery.)

He explained that he would like to do the surgery in two parts - one side first, and six weeks later, the other. He pointed out that at least half of the doctors in his practice would do both sides at once, but he prefers doing them separately. He doesn't like putting kids through a four-hour surgery. Plus, he likes to let things heal so he can see how the first testicle "reacts" to the surgery before doing the second. Strike two.

While we mulled his recommendation over, I asked about Ethan's medications. He's on a new one since his surgery last March - should we check first to make sure there would be no adverse interactions with the anesthesia? Also, should any medications be weaned down before surgery? Without even opening Ethan's chart or asking a single name of the drugs, he said, "No, we don't need to worry about that. It's not a problem. We do surgery on kids like this all the time." Strike three.

He left the room and sent the nurse in to schedule the surgery. She told us when to call for the details, and moved on to explain the rules of surgery: no eating after midnight the night before, nothing but clear liquids until 3 hours before, and then nothing at all.

This prompted more questions on my part. (I know. Hard to believe, isn't it?) What time would the surgery be? She said they schedule surgeries anytime between 7 AM and 4 PM - it could be early in the morning, or it could be late afternoon. It all depends on the doctor's schedule. I requested a morning appointment if possible; it would be best for the timing of his medications.

Which led to another question - I asked how he would take his seizure meds the day of the surgery. I explained that Ethan cannot drink thin liquids, and that he takes his pills with food. When he had his hip surgery in Boston, they told us to use apple jelly - the closest food to a clear liquid - to give his drugs during the liquid phase. She insisted that this was not acceptable, and he could not have anything other than liquids. "Once you have the dates of the surgery, we'll deal with it then. They can always give his drugs intravenously."

I wanted to tell her: you've already struck out. You can stop swinging now.

I nodded and let her give the rest of her speech. As Jete and I walked to the parking lot, I told him I wanted a second opinion. He agreed. There were too many strikes against them:

• Strike One: Yes, I want Ethan to retain his dignity, and be a whole, functioning man one day. But realistically? He's not going to be. He's permanently disabled - mentally and physically. He will most likely never walk, talk, feed himself, be toilet trained or live on his own. Never mind find a partner and have children. We've accepted that. So focusing on maintaining his fertility as the primary reason for doing surgery? A mistake.



• Strike Two: We just don't see the need to put Ethan through two surgeries and two recoveries. I can understand why a four hour surgery seems like a big deal to some parents, but Ethan went through a 10 hour surgery last year. We'd like to get this over with. To mess with his medications, his schedule, pain and recovery time, just to do one side? And then to do it all again a month and a half later? Just seems cruel.



• Strike Three: The clincher was when the surgeon pulled the "kids like these" line. I understand that as medical professionals, they do see disabled children in their practice. However, in all of our visits to their practice, and all of his other specialists, we have never come across another child just like Ethan.

If I thought faster on my feet, I might have asked him what he meant by "kids like these" in the first place. Did he mean blind children? Or children with CP? Children with mental retardation? Children with hearing impairments? Children with seizure disorders? Or Children with Lennox-Gastaut, whose seizures are not yet under control?

I'm willing to bet that this surgeon has never had another patient just like Ethan. Ethan has a unique and complicated set of medical issues. I'm sure by saying that, he was just trying to reassure us that everything would be okay. Instead, he caused me to wonder about his abilities to treat my son, with all his complicating factors.

When our pediatrician first described this procedure, she made it sound quick and easy. Snip, stitch; in and out in a day-stay procedure. But as the surgeon described the intricacies of the blood vessels involved, and up to four hours of surgery, I started to doubt that. Never mind the problems they had with the ultrasound. What if things aren't cut and dry once they make the first incision? What if something else were to happen? If his seizures increased during surgery? Or he started vomiting in recovery and couldn't keep his meds down? What would they do?

Also, they weren't taking our questions about his medications very seriously. I've been told before that some medications cannot be given intravenously - like his Topamax. When would they deal with that, if I didn't ask?

I've never had a problem with our local physicians. Our medical services are more than adequate. Undescended testicles is pretty common, and this is usually a routine surgery. If we had a typical child, these surgeons would be perfectly acceptable. But as much as I'd like things to be different, I've learned that nothing about Ethan will ever be "routine".

We might have to look to Boston to handle this surgery. It will probably be quick and simple, with no complications, and no issues with his medications. He'll probably be disrupted for only a day or so and then back to his usual routine. But in the slim chance that something "not-so-routine" happens, I'd rather him be there than here. Call me a big-city snob, but I feel safer with him in the big-city hospitals, where his set of medical conditions isn't so unique. Where doctors more likely have dealt with "kids like these" once or twice.

The real question is: has anyone dealt with "parents like these" before? Because apparantly I? Am a nightmare.

Let's Just Go Dutch

Recently, over at Darn Tootin, I put my two cents in on a discussion about the well-known "Holland" passage.

(Well. I should clarify. Well-known to me. And maybe a bunch of parents who have special needs children. And some other folks too. But not well known to Jete. If you asked him about the "Holland" passage, he'd probably think it was like the Panama canal or something.)

For Jete and any of you others who live under a rock, "Welcome to Holland" is an essay written by Emily Perl Kingsley explaining what it's like to have a child with a disability. If you've never read it, you can read it here. Even if you have read it, go read it again, just as a refresher. Go on. I'll wait.

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All set? Ok. Moving on...

Shortened, the discussion at DT was about the opinions and advice of outsiders and how people react to a parents' choice of words regarding their child. Namely, calling them "special" versus calling them "broken". Several of the comments got down to "anti-Holland" sentiment. I perceived some people as saying that "Holland" is a steaming pile of crap and anyone who believes in that sort of thing is a big, dumb stupid-head.

Or something less juvenile. (Cut me some slack. It's late and I'm still on a sugar high from trick-or-treating yesterday.)

This discussion hit me at a particularly bad time. I've been feeling unsure of my parenting skills lately, and I've been beating myself up for not doing Enough for Ethan. Whatever Enough is. While my gut tells me we're doing everything we can for him, I still have doubts. I think, "Someone else would do a better job at this." Whether or not it's true, it makes me extra sensitive to people judging me from the outside.

With my own doubts compounding, I got a bit defensive and put a comment out there, which, I'm sure, immediately alienated me from the cooler, better writers who read this site. Basically, I wanted to know where all the Holland hatin' was coming from. I was starting to feel like I was SUPPOSED to hate the passage, and just by finding something good in it, I became a Bad Parent. One of those parents who uses the TV to babysit their kids, and feeds them Chef Boyardee for dinner, and lets their daughter wear mini skirts in the third grade. Who doesn't fight to fix their kid's problems, but instead gives up and uses labels to patch what ails them. A parent who just doesn't give a damn. I wanted to point out that there some parents who can appreciate "Holland" and still fight for our children.

In return, a new friend commented on my site and pointed me to this article to explain why she doesn't like the Holland essay. My first thought was, "Wow. That Cornfield lady is a much better writer than I am." And I could totally relate to her opinions. It's an excellent article, and she defends her position well. It didn't change my opinion, but I could see where she was coming from.

My second thought was, "Wow. That Cornfield lady is a hell of a lot deeper than I am."

See, I'm no dummy. I'm pretty smart. Got a 5 on the AP Calculus test. But when it came to my literature courses, I did slightly less well. I never really excelled at that whole "ripping literature to shreds" bit. The part where you take a 3 line poem and write a 10 page paper analyzing every. detail. inside the author's mind at the time they wrote it. I was the girl who wanted to say, "That was a really good poem. I think it's about a bird, and how a bird can represent hope. The end."

My experiences with "Holland" were just about that deep. I read it for the first time and thought, "Huh. That's a pretty good analogy. I like that." (I'm guessing analogy is the wrong word. My resident English expert - E? What's the right word? Metaphor?) That was it. End of analysis.

From the Cornfield article and the comments at DT, I'm guessing a lot of parents had completely different reactions when they read it. It sounds like it is partly tainted by the delivery. Passed out by people with no experience in the matter who thought, "Look! Have some sunshine you depressed parents! Now cheer up!" I can see how that would irritate someone.

I honestly can't remember where I first read it. Maybe on someone's website, or maybe I caught it in a magazine. Or maybe an acquaintance, whose special needs brother recently passed away, gave me a copy. All I know is that it wasn't thrust on me in the midst of my grief to try to make me smile and suck it up.

Also, I thought of the audience when reading this. The essay is meant to be directed toward people who are NOT parents of special needs children. To give outsiders a small glimpse of what the inital few days/weeks/months do to a parent. To explain that we are not just dealing with the worries and fears for our child, but with the loss of everything we thought parenting would be like. Everything we had imagined for ourselves and our child; their birth, their homecoming, first smiles, first steps. It's a readjusting of expectations.

Obviously, this essay doesn't apply to all parents with children who have special needs. It isn't meant to be a One-Size-Fits-All t-shirt. But it also doesn't only apply to those who have severe needs, like Ethan. I would imagine the parent whose child has "only" a hearing impairment, or "only" a learning disability must go through a similar process of grief and adjustment.

I didn't write the essay, so I don't take it personally if you hate it. I just take it personally if you say I am an idiot for liking it. And I don't like it because I stroll through the tulips every day with a stupid grin plastered on my face. I don't want to come across as if I'm happy with Ethan's situation. Lord knows I'm not. I'm bitter as hell. I hate everything about this. I'm angry a lot of the time. But I've redirected my anger. I'm not angry at Ms. Kingsley, or doctors, or well-meaning but ignorant family members. I'm angry at the unknown, the "why" for which we'll never have answers. Mostly, I'm just sad. And I think quotes like this convey that pretty well:

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

And I think it's very true - if I wasted all of my energy being Angry, I'd be losing energy that could be spent enjoying Ethan. If I spent all my time Sad that he will never walk or talk, I'd miss out on his beautiful smiles and joyous laughter.

But I know I'm unique. I'm very lucky, as I've mentioned before. I have a wonderful partner, awesome friends, and a terrific extended family who help us out whenever they can. There are single parents out there whose children have far less needs that have a rougher time of it than I am. So I'm sure they'd have a lot to say to me about appreciating life in the face of so much adversity.

The thing is, I never read too deeply into the "Holland" essay. I didn't expect it to be the Ultimate Guide to Special Needs Parenting. It was a short, simple, metaphor. Obviously, there are flaws to the metaphor. You can't simplify something so complex, so painful, so monumental, in a few short sentences. But I think it was a good effort, and I got her point. I could relate. And really, isn't that what writing is all about? Relating to your audience?

My point is, I liked the Holland piece because of it's simplicity. It made sense to me. Because, even though I've rambled on for three dozen paragraphs, I like a clear and simple message.

Honest. I do.

Seize the Day

So, as I'm sure I've mentioned about a jillion times, Ethan has a seizure disorder. But what I don't think I've mentioned is that it's not just any run-of-the-mill seizure disorder. It is the MOTHER of all seizure disorders. Because in this family, when we do something? We go ALL THE WAY.

Ethan has Lennox-Gastaut syndrome, or LGS. It is hard to pronounce and I never spell it right, which is fitting for a syndrome that no one can figure out how to treat.

The first time we were told Ethan had LGS, we weren't really affected. We knew he was prone to seizures, we knew he had been having seizures for about a year, and we knew his brain damage was permanant and widespread. Our first reactions were something along the lines of, "Yeah, so?" We thought, give him some medicine, the seizures will go away. We'll go back to our lives.

Then, I started Googling.

I only linked to one site above, but if you are in the mood to be depressed, do a little reading on the sites Google finds for Lennox-Gastaut syndrome. Heavy duty. When you see the words "severe" and "devastating" in a description of something your child has, something in you snaps. I was at work when I started this research, not such a good idea for a hypochondriac with a panic disorder and mild depression. I was a wreck for days. I kept picturing Ethan becoming a shell of a person, wracked by seizures, his constant good mood disappearing, losing what little skills he had gained... smiling, laughing, babbling.

After a while, I snapped out of it. I looked at Ethan and didn't see the hollow face I imagined would one day appear. He was alive, and happy, and full of love. Yes, he might have more trouble down the road, but for now, he was here and he was laughing and I was a fool for missing out on every moment of it.

Ethan has dozens of seizures a day, which sounds a lot worse than it actually is. At least, we have learned to deal with it and things don't really seem so bad. On good days, he has 15 or 20 visible, obvious seizures. On a bad day, he could have 50, 60, 70 or more. The types he has last less than a minute, and usually only look like he is staring off into space, lost in his own world. He also has tonic "drop" seizures that are more obvious. With these, his arms go out and stiffen and his head drops down. These started when he was in daycare and were what led the doctors to his eventual diagnosis.

It has been about a year since we learned the name of his seizure disorder. For that year, we have been trying different medications. Topamax, a drug also used for migraines, seemed to be working for a while. His seizures would decrease down to 10 or less on the best days. But after a few of weeks of good control, his seizures would start to increase in number again. The dose would then be increased, and we'd go through the cycle again. In the past couple of months, between the hip surgery and all of its drama, we have reached the maximum dose for Ethan's weight. But still, the seizures keep breaking through.

I read enough about LGS to know that Ethan will probably never have full seizure control. I had accepted that he will always have some seizures. Once we got used to his daily routine, it became almost invisible to us. We can carry on a conversation while rubbing Ethan's arm after a seizure, and barely register that one has even occured. They are like a quick sneeze. Life goes on afterward.

Today I had to call Ethan's neurologist's office to straighten out the insurance mess for his seizure meds again. While I was on the phone with the nurse, I left a message for the doctor. I told the nurse to let him know we were on the max dose of the medication and he was still having between 15 and 30 seizures most days. No big deal, nothing worse than before, but I just wanted to let him know.

He called me back 7 minutes later. Seven. That is never a good sign.

Dr. J is a good doctor but a horrible comforter. He has the worst bedside manner of the dozens of doctors Ethan sees. He is as dry as burnt toast. I'm sure I will get into Dr. J stories with my Ethan history, but suffice it to say I have cried more than once after speaking with him. He is blunt and unemotional and never tries to cushion the possible negatives. On top of all that, I am afraid of him. I have been scolded for not contacting him sooner with different issues, even though I am new at the whole "kid with seizures" thing and don't really know what I'm doing. My only excuse for him is that doctors who deal with children's brains probably don't have much time to be friendly. They are too busy giving out horrible news to terrified parents and kids. For that, I guess I'll give him the benefit of the doubt.

So Dr. J called me back at work and my stomach flipped. Why-oh-why was he calling me back? We already have an appointment in a few weeks, can't this wait until THEN?

He asked me to repeat my story about Ethan's seizures and then said he didn't realize he was still having so many seizures. He wanted to know if we saw the neurologists in Boston when Ethan went for his hip surgery. I tried to explain that No, he didn't need the doctors there because he was doing fine with his seizures after the surgery. He had so many pain meds running through him that he was completely relaxed and calm and had less seizures than ever before. I swear he even had a day with NO seizures. (That would have been an exciting event, if it weren't for the ICU and the body cast and all.)

So Dr. J wants to see us this Friday, before he leaves for a two week vacation. He wants Ethan to have labs drawn, and we'll probably start him on a new medicine. Which, he was kind enough to point out, most likely won't work anyway. Yay.

Then he said the words I had been dreading. "I will probably send you to Boston to meet with the doctors there. I think we may have to start him on the ketogenic diet."

ARRGGGGHHHHHHHHHHHHH.

The ketogenic diet is a long practiced treatment for seizures, dating back to before the drugs had been developed. It is a diet of almost all fats, and almost no protein or carbohydrates. Everything I've read about it sounds like it's the Atkin's diet on steroids.

The diet is very effective at treating seizures, bringing about 2 out of 3 patients to much better or even complete control. For that reason, it is definitely worth a try. Even though something tells me that at the rate we're going, it isn't going to work either.

Of course, it has its down sides, too. The diet is very difficult to maintain. The child cannot have ANY carbohydrates or sugars, or he could spiral into even more seizures. This means Ethan's favorites, bananas, are completely off limits. The meal plans are very specific and structured and a nutritionist has to be closely involved. The inital phases of the diet mimic starvation. The child cannot have any food for a day or so. They must be hospitalized to ensure everything goes properly. Some things I've read say that the child must be in the hospital for up to a week or longer until the diet has reached its therapeutic level.

Hospitalization. For up to a week. Or longer.

Sigh.

After hanging up with Dr. J and Googling myself silly, I just sat at my desk and stared at the screen. I felt so goddamn sorry for myself, and for Ethan. I should have known this was coming. Every time things start looking up in one area of his health, we get slammed with a problem in another.

Last Friday, we headed into Boston for our follow-up visit with the surgeon. Ethan has been tolerating a sitting position and is 99% back to himself. The cast is gone, and he only needs his hip brace when sleeping. They don't need to see us again for three whole months. We got a reprieve, a season's pass to enjoy the summer and relax. Breathe again. It felt wonderful.

Then only 72 hours later, the pass was revoked and we were back into the endless doctor's appointments, time away from work, away from CG, hospital stays, being far from home....

It was too much to take. I went into the bathroom and cried. I was physically, emotionally, mentally exhausted. Drained. I felt like I had nothing left to give. We just got our lives back together, and now we have to start all over again. It just doesn't seem fair.

One of the hallmarks of LGS is a "spike and wave pattern" on the child's EEG's. I feel like that is the symbol of our lives the past few years. We go through a spike of stress and worry and hectic appointments, then a slow wave as the problems recede. But every time, just as we think things are calming down we get hit again with another spike. It's neverending.

I'm over the initial spike and feeling a little better. Getting home and talking to Jete helped. There's always a release after I unload some of the worry onto him. We can share the burden together and somehow it isn't so daunting.

I'm trying not to go crazy with worry and anticipation of what might happen. Maybe we can wait a few months before trying him on the diet. Maybe the Boston doctors can consult but he can do the hospitalization locally this time. Who knows.

All I know right now is I'm tired. And his doctor gets to go off and have a vacation. But this? Is IT for me. There are no vacations. I will never have a break from this life. EVER. Sometimes, that is really depressing.

But then I start to snap out of it a little. Ethan smiles and laughs, and I remember that there is a chance we could lose that some day. So I better buck up and start enjoying him while he is still himself. Truth is, I could probably learn a thing or two from him if I stopped being so damn mopey. Life is about right now. Live it while you've got it.

Carpe diem, Ethan. Damn right.