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.

:)