Saturday, November 27, 2010

Winter can bite me

Dear blog, it has been 11 days since my last post. Before that it was 7, and then 5 (though that was just a little blog hop post) and before that 7.

I could blame it on a lot of different things, but the real root cause is that it's winter, and this is Michgan, land of not much sun in the sunny part of the year, and no sun at all this time of year, when it's just becomming light when I leave for work, and nearly dark when I leave there for home.

The truth of the matter is, I'm struggling, mood wise, and it shows in my blogging, or lack thereof.

It's not like this is a new thing. It's been ongoing, to varying degrees, for years. We've replaced most of the lights in the house with full spectrum bulbs, I've increased my vitamins, I've learned to meditate. I've even taken antidepressants at various points. Some years have been bad. Some years, like the year Acorn was born, I was already so overwhelmed that the seasonal changes were completely unnoticed.

And maybe that's part of the problem too. I've been stressed lately...but not in the same sense that I was back then. This is more a death by a thousand cuts kind of stress, and I'm just not up to handling that sort of thing these days, because there are so many more important things to deal with. We're making plans for next year - plans for life without a trach, we hope. And that's a huge adjustment for all of us.

It's good, but stressful, and the fact that there are so many good things going on right now just makes the depressed mood stick out more.

Tuesday, November 16, 2010

Preemie Awareness Day

I'm writing this post the night before, due to work schedules being hectic.

Earlier this evening, Acorn was sitting cross legged on his bed in his jammies, watching a favorite video. I was sitting immediately behind him, my arms around him, my legs making a circle for him to sit in, and with a hint of a slouch, my chin resting on the top of his head, the little curls at the ends of his hair trying to tickle my nose. He used to sit under my chin like that during kangaroo care...

It seems so strange to me that time flies so quickly - it seems like only a few weeks ago that he was just home from the NICU - as of last week, he's had his trach 2 years, and it can't possibly have been that long.

It can't possibly have been almost 2 1/2 years since he was so tiny that his whole body fit easily between my chin the top of my bra, since he was small enough to fit entirely in my cupped hands.

 And when did he get so big? I carried him for about an hour this weekend, after he fell asleep on our way to a powwow; between sleeping and him being uncomfortable walking in crowds of adults, my arms were killing me, but this used to be my favorite way to hold him for an hour: 

At any rate...

Acorn has a few issues, and while they're minor, they will likely always be a risk factor for other things - asthma and scoliosis are our big worries right now, but we don't know how things will continue to unfold. We have a mostly healthy, really pretty normal toddler, in spite of everything he's been through, and that's the important thing.

But getting here....that's been a long road. Too many babies, and too many families, travel the same road, and I'm glad the March of Dimes is working on figuring out ways to reduce the number of families at risk for the things we've had to experience.

Tuesday, November 9, 2010

what to expect...

I think, if we have another child, that I may burn my copy of "What to Expect When You're Expecting."  By week 8 of the pregnancy, we'd already broken the rules in the book - we were 2 ultrasounds in, had seen his heart beating both times, and my morning sickness was so severe that I had been sent to a dietician. Pre-eclampsia is mentioned in the book, but there's no actual discussion on what happens if you get it.

Acorn is definitely not what they (or anyone else really) were expecting, and I think one thing I've learned from this is not to assume life will be typical.

So it is with Acorn's new doctor who, upon reviewing one test report, was mumbling the report outloud as he read it, and then exclaimed, "How rude! They called you unremarkable! Clearly that's not true, you're unique and wonderful!"  Acorn clapped and giggled. This doctor? Not what we expected, but definitely what we needed.

Later this week will be Acorn's second trachiversary - 2 years he's had his trach, and really, I can't imagine him any other way, though I look at the dozens of NICU photos on my wall here at work daily, including the time before the trach. It's odd, when you consider it, that we think of all this as normal - the tubes, the nurses, the doctors, the therapists. Again, not what we expected.

Expectations are all around us, but just for today, think about what life might be like if you decided to do something completely unexpected. Try it sometime - you might be glad you did.

Thursday, November 4, 2010

Special Needs Blog Hop: Love

This week's question: What do you love most about your Child?

I have to say, that's a hard question. I mean, I love Acorn pretty much as he is, as a complete whole, you know?

I think though, that what I enjoy most about Acorn right now is his voice. After not hearing him make any sounds for most of his first year and a half, and then needing a few months to work up to making a lot of sound, his laugh is always amazing to me, and hearing him cry, while it breaks my heart, is so much better than watching him cry silently.