Friday, April 30, 2010

National Infertility Awareness Week

This week (April 24-May 1) has been National Infertility Awareness Week.

I haven't written much about it because it's such a raw subject still, and because we've been talking about attempting another baby - but it took 5 years to get pregnant with Acorn, so it makes one wonder whether trying is even worth the effort.

Rather than scooping out my soul to slather it in words on this page, let me give you a few links:

What If (the question that sticks around in your head all the time when you're dealing with infertility)
Faces of Infertility (a little slide show from @mammaincredible to go with that question of hers).


The post I wrote on why having a baby doesn't mean infertility goes away (this one got me in trouble with my mother-in-law, who took it personally)

and finally,

the post where I talk about the Pagan community and infertility, and wherein I started trying to heal those old wounds. Though, with a little more time and perspective (just a bit over 2 years later), I can say that the scars left behind are as painful as the original wounds...but at least I'm not bleeding all over the floor every time I move. I can go to baby showers, and hold other people's children....which I'd stopped doing prior to Acorn.

There's a link in that last post to a site I started for Pagans dealing with infertility, adoption, and loss. It crashed at some point in the midst of the medical drama with Acorn, but I started earlier this week working on a new version, which I hope to have live by the end of May.

With that, I think it's time to go home and hug my kid.

Tuesday, April 27, 2010

because you can never have too much technology

So, this post is going to be shameless promotion. You've been warned.

We got Acorn his own keyboard for the computer (a toddler proof one) but haven't hooked it up to anything. One of these days we ought to do that - he's fascinated with phones and computers (In our house? really?).

I keep hearing that there are fabulous apps out there for iPhone and iPod touch, meant for kids his size. And we've seen assistive communication devices on iPhone - the school had pushed for a bulky picture-and-button contraption originally, but we pushed back and we're working on oral speech instead...but some days I wonder if that was the right path to take. Then again, we do not own either device, and likely will not buy an iPhone just for Acorn to destroy at this point, so I suppose it's kind of a moot point.

It turns out there's a wonderful blog that reviews iPhone apps for kids - fittingly, it's called "Best Apps for Kids." And right now they're giving away an iPad to a lucky blogging parent...and this post is my entry to that giveaway.

Now, I already have a netbook of my own. But wouldn't it be cool to have an  iPad to play with...and maybe get Acorn to use?

Monday, April 26, 2010

What a Wild Month

First, it was the last minute trip to my mother's partner's funeral, and meeting a ton of new people. I suppose you can say that I learned that I have a step brother, and I will have to look him (and his kids) up the next time we're out that way.

I also learned about a lot of the skeletons in the family closet - things about my mother's childhood that she'd hinted at, but not said outright, things she's learned about what happened to her sister and brothers after she left. It's left a bad taste in my mouth overall, and it means that I need to get on with the writing of our will so that we can be sure Acorn is taken care of by someone who will take care of him and protect him - something that too many in my family have not done in the past.

Then it was a weekend at Notacon - a great little computers and creativity and stuff sort of con in Cleveland. It was a good weekend from a mental standpoint, and a horrible weekend for sleep.

Then this past week, Acorn had surgery to begin repairing his hypospadius. The doctor and I are going to have a discussion about his decision to have Acorn kept overnight, in a space where nurse basically said, "you're not expecting us to do any of his care, are you?" and where he slept poorly and pain wasn't managed well.

This weekend we went to a BBQ. Tonight I'm hosting my first full moon ritual. Acorn is still cranky, and is staying with his least favorite nurse today (she's competent, but her personality sucks).

And I'm just ready for this month to be over, so we can try for a calmer month next time.

Thursday, April 8, 2010

Anxiety in Spades

Some days, it occurs to me that Acorn comes by his anxiety naturally.

My mother's partner passed away earlier this week. I did not really know her. But my mother needs some support, and the likelihood of anyone else in our family going to the funeral is slim to none, so I feel like I need to go.

I don't like leaving my kiddo behind. The one trip I've taken for work was downright traumatic on that front, and this one involves a weekend - and I often feel like that's the only time I get with Acorn.

I don't like last minute things like this - I found out yesterday afternoon, and I have a flight out of here at 9 am tomorrow. I always feel like being rushed is going to result in something being forgotten or lost or otherwise screwed up.

And finally, I really struggle with anxiety when it comes to groups of people I don't know. As far as I can tell, I'm driving from the airport, an hour and a half into the middle of nowhere, and attending a gathering of people I don't know, in honor of someone else I didn't know. I know that to some extent, I will be put on display as my mother's daughter, the one with the sick kid, and I really just hate that.

I dunno. I'm kind of hoping for a relatively quiet weekend with some down time to meditate and write. But knowing my own anxiety, the situation, and my mother, I'm guessing that's a long shot.

Monday, April 5, 2010

Damning praise and backhanded compliments

One of the key coping skills needed when you're the parent of a child with special needs child is the ability to deal with stupid things other people say.

Sadly, for us, a lot of those things come from our family.

This weekend's gems included Acorn's great-grandma saying, "I never thought I'd see the day that he was up and walking around!"  I bit my tongue - the words, "why not? His lungs are the problem, not his legs" were not going to help the situation.

Another this weekend from the family was, "oh! He follows directions! And you don't even have to yell. Isn't he just brilliant?" I could go into a treatise here on parenting philosophies and developmentally appropriate intractions, but instead I just said, "We don't yell in this house. Acorn knows the rules, he just needs a reminder once in a while."

On the other hand, we get it in public too. Somewhat less now that we're not carting a ventilator everywhere we go, but it still happens.

One of the ones I hate the most when we're out in public is, "oh, your little boy is so good!" by which they mean he's so quiet (because children should be seen and not heard, I suppose). I have been known to say, "that's because he's got a tube in his throat" or "well, he's non-verbal, so if he was talking, we'd be celebrating." But most of the time I just nod and walk away, because I don't want to have to explain Acorn's entire medical history, or get into an argument on parenting philosophies.

We've had several versions of "It's so sad that he's like that!" I think they are trying to be compassionate, and just failing miserably, but it's obvious he's not sad about it at all. I've been known to say,"no, it'd be sad if he was dead, which is what he'd be without all this stuff." but I'm thinking maybe that's not the most politic thing to say, you know?

All in all, I'm really frustrated by the compliments that make it sound like people are amazed that Acorn is a mostly normal kid. I'm frustrated by the comments that make it sound like the fact that he doesn't talk means he doesn't think and doesn't understand what people are saying. I'm frustrated by comments that make it obvious that the speaker feels that all children with special needs should be sat in a corner and left to rot.

And I'm frustrated by family who should know better.

Friday, April 2, 2010

Why is faith important?

First, I swear I'm going to do something to allow threaded comments drives me crazy that I can't easily respond to comments :)

I know that there are many other parents out there with kids with special needs. I have quite a few friends and acquaintances now that I would never have known without Acorn. For the most part, we all stick together and offer support when we can, where we can, whether or not our kids share a diagnosis.

Sometimes it can be overwhelming for me (or anyone else) to dig through resources looking for something that is useful to us and our child's condition(s), only to find tons of information for more "common" special needs, and maybe a snippet here or a mention there that applies to us. A mother I know who has a child with autism points out that they have a similar (but, to my mind, very distinct issue), in that there is so much out there that might generically apply, but that may or may not work for her child, that she still feels isolated.

The difference is that in her case, there's too much information to sort through that might apply, and in ours, there's practically no information that even comes close.

In a lot of ways, the intersection of faith and special needs is the same. Faith is often a big part of how people handle difficult circumstances....and again, digging through the various blogs and books and articles out there...there's not much for me to draw on, not many others who have forged a path to suggest where I ought to be heading. It's not new news - I used to run a message board for Pagans facing infertility and looking into adoption, because there was nothing else similar out there. I'm just somewhat frustrated by the fact that I am often fnding myself in situations that mean that if there will be any support for anyone, it has to come from me.

Thursday, April 1, 2010

Searching for eggs? Not hardly.

There are a lot of posts on local parenting message boards about various local public Easter egg hunts. Some parents have actually scheduled things so that their children can go to more than one.

Although Easter isn't a holiday we generally celebrate, egg hunts could be fun. Theoretically, at least.

If they didn't involve so many people, all in one spot, right at the end of RSV season.

Maybe we're paranoid, but last year, RSV and Acorn were a bad fit. He spent 3 days in the PICU, went home for 4 days, and we went back for another three days, this time via ambulance (full lights and sirens, running red lights), at 8 liters of oxygen, which, with the ventilator, was still only getting him to an oxygen saturation in the 82% range.

When you call 911 and say baby with breathing difficulties, they don't hear anything else - it's probably good they didn't realize he was on a ventilator, or the whole police and fire dept would have shown up.

You know you've spent too much time in hospitals when the critical care ambulance crew comes to a dead halt upon looking in your child's doorway. We have about as much equipment as they do.

You know things are bad when they ask their questions and say, "well, let's just take him, because there's nothing else we can do."

And it's hard not to fall on the floor laughing when the EMT-in-training asks if you're a doctor....or the look on his face when you say no, just after the actual EMT on the ambulance is calling the ER and says, "well, mom had already done everything we would have, and more, so we figured we'd scoop and run and let you guys sort it out when we get there."

Another little guy we know with a trach had an even worse experience with RSV this past month, including the threat of life-flighting him to a larger hospital.

Yes, we leave the house. Last year, we left more than was probably wise. But we're cautious.

We avoid crowds - particualrly indoors. We avoid putting Acorn in situations where others will be sneezing or coughing on him. We got Synagis (an RSV antibody) shots approved this year.

And yes, we're going to get him out this spring and summer (including to a weekly nursery school for the next couple of months)....but we're taking our gallon jug of hand sanitizer.

But there's no way I'm putting him in the midst of a crowd of crazy parents and their kids, to get run over and sneezed on, where he'll be handling eggs that who knows how many people have handled.

Not this year. Not with how far we've come since that last ambulance ride. There's too much to lose.