A crazy week

We've had a marathon of a week, and it just keeps getting more crazy.

The washer broke (and hopefully will be fixed today because diapers are overdue for washing).

Appointments have run late.

Work has run late, and been stressful - and some of the things I've been asked to do, while done as requested, have made other people mad (not at me, but at the person directing me).

The mother of one of Acorn's nurses passed away last week, so we've been in schedule limbo, including one very long day where PaganMama was on Acorn duty from 7 am until 10:30 pm with no other assistance.

For those of you with more normal families, you're probably thinking, "I take care of my kid all day, what's your problem?" But I assure you, taking care of Acorn is physically and emotionally draining, in a way a normal kid is not.

Normal kids don't come with 50 lbs of gear attached.

Normal kids rarely have days where they have multiple appointments to sandwich in between naps, so if a nap is off by half an hour, it's no big deal....Acorn, on the other hand, only got a 40 minute nap Tuesday, because he didn't nap on time for his first nap, and it snowballed from there. He and I are both still catching up on sleep. And that sort of schedule is a weekly occurrence.



Normal kids don't require batteries or an electrical outlet to keep breathing.

Normal kids don't come with the worry that they might pull on something, set off screaming alarms, and then suffocate....and they especially don't come with that worry while strapped into their car seats.

I took Acorn to his 15 month well-baby check up, 10 miles away, by myself. Had something happened on the way, my only recourse would be to pull off the road into a parking lot or side street, get out of the front seat, and into the back seat, diagnose the problem, and fix it....hopefully before he turns too blue.

Don't get me wrong - things are better every week. He's stronger, has more reserves, needs less oxygen, does more in therapy, he's on the verge of  crawling and walking (and this from a kid who couldn't roll over in March).

We're mostly past the stage where Acorn turned blue every time he pooped, but it's not so far gone that we've stopped worrying about it.

There was a time where I would never have even thought to attempt a car trip without help - that's a sign of how much better he's gotten this summer. If something had happened, I know I probably had 4-5 minutes before things were completely out of control, rather than the 60 seconds we had when he first came home from the hospital. We don't carry the machine to check his oxygen saturation with us everywhere we go anymore.

We actually sleep on nights we don't have nursing.

And every day, I remind my Gods and Goddesses how greatful we are for this miracle baby, and how happy we are to have this smiling, happy, whip-smart kiddo to brighten our days.