Wednesday, March 31, 2010

Almost Wordless Wednesday

One year ago today, Acorn finally escaped the NICU and came home.

 Last pic in the NICU

Out the door

And finally at home

Tuesday, March 30, 2010

a sliver within a fraction of a percent

Being the parent of a child with special needs can be isolating. Being the parent of a child with a fairly rare complication of a subset of special needs kids even more so (turns out BPD is about 1 in 10,000 births; a trach is a small but growning fraction of a percent of BPD kids, because doctors are more and more realizing the benefits of breathing - what a concept, huh?)

Being that parent with a child who's in a one in a million sort of situation, and being Pagan?

Welcome to No Mom's Land, population you.

Don't get me wrong - I love reading the blogs of friends who rely on their religion to get through their days. Btu I wish once in a while I read something I could better relate to...and so here I am, writing away, trying to find the words I wish I was reading.

"You are God, You are Goddess" or, my more favorite Dianic version, "You are Goddess and you are beautiful" are important - we are divine, our children are divine...and they are beautiful and perfect as they are, because they are how they were meant to be.

Would we make life easier for them if we could? Absolutely. But I do feel sometimes that we're on this path together, Acorn and his father and I, and we're dragging the whole family along with us, and being together and accepting him for who he is, and facing his challenges together as a team is what makes it easier, no matter what the outcome is.

I spent a lot of time in the early days thinking about how we would "fix" Acorn - how we would make him better, make him whole. But as I've gotten my depression under control, I've realized that what needed fixing was my attitude and perceptions. Acorn is complete; he is a part of the divine whole, and as such, there is no need to "fix" anything - though improvements that take us down a path towards a fulfilling life are always welcome.

In Acorn's case, I know that there will come a day when people he meets will think he's "normal" - they will assume that he hit his milestones on time, that he's always eaten by mouth, that he's never had tubes and wires and monitors and equipment....they will take for granted everything we will have worked for. Not every child has that opportunity....but that doesn't mean that they aren't living a life full of joy and wonder.

Starhawk wrote a chant that says, "She changes everything She touches, and everything She touches changes" - look around, and you'll see that this is true. Our children change every day - sometimes for the better, sometimes for the worse, but they are, as we are, still a part of the divine. We learn as much from them as they learn from us, and in doing so, we change too.

And what about magick? I have learned, over the years, that in order to make magick really work, I have to be able to let it go. That starts by accepting the situation as it is before I can change it, so that I have firm ground to stand on when I start directing energy - it's more likely to be on target that way. I've done magick for him, and on him, I've done energy work for him and on him, I've asked my Gods and Goddesses for their help and protection on his behalf.

In the end, really, it all comes to being mindful of where we are right now, and planning for the future as best we can. The sun will come up tomorrow, and the wheel turns, and we start all over again.

Tuesday, March 23, 2010

Oh, now I see...

We recently got a new night nurse added to our schedule. She's competent enough, but there's something about her I haven't liked since her first night....and last night I finally figured out what it was.

Most nurses come into our house and say, "how is Acorn?" We usually give some brief answer to that, and they respond with, "Any problems or changes?"

This nurse comes in, and her response to, "oh, he's fine, he had a good day" is something like last night's response: "Did he have a BM today?"

I'm told she's a good nurse, that she's really a great person.

But seriously, her biggest concern is whether he pooped today? Frankly, if he hadn't (because we typically get 2-3 a day), I wouldn't say he's fine - I'd say, "well, we think he's constipated," or, "you know, we were just talking, and none of us has changed a poopy diaper today, so I think we should be watching that closely."

When she saw me changing his speaking valve for a trach nose after I carried him up last night, she asked, "So how long did he wear that today?" Acorn's been wearing it all day for weeks now - actually, for about 2 months. So...if he hadn't worn it all day, I wouldn't have said he was fine, I'd've said, "Oh, he was extra mucousy today - maybe catching a cold - and the valve just was too much, so be prepared to sit there and suction all night."

I dunno. I understand how nursing shift hand-offs work in the hospital, but even those are more personal than this.

Sunday, March 21, 2010

Easter traditions, when you're not Christian

Our Ostara celebration involved going to the park today. It was chilly - more chilly than I would have preferred for a walk, but we all needed out of the house, and Acorn loved the swings.

Our walk was marred, however, by a call from Acorn's grandparents (Big Oak's parents, not mine).

We used to have a good relationship, really. I used to like hanging out with them. Over the years, however, their outspokenness about the fact that we "owed" them grandchildren (in the midst of fertility treatments, no less) has taken its toll. Add to that the fact that they were miffed that we wanted to spend Thanksgiving and Christmas with Acorn when he was in the NICU, and you've got the perfect storm of in-law insanity.

Big Oak had taken it upon himself (initiative? who is this, and where is my husband?) to call them a week or so back to discuss what the plans were. We know from experience that they will decide at the last minute what the plan is, and what exactly they want us to bring - the first year we were married, they told us on Monday of Thanksgiving week that they wanted pumpkin pie....and I was in another *state* until late Wednesday evening. Where do you find pumpkin pie at 9 pm the night before Thanksgiving - in fact, where do you find *pie crusts* then?

Grandpa had said that Great-Grandma wanted to go out for Easter dinner. It was agreed that they would talk it over, and get back to us with a plan.

Apparently today they decided to get back to us, since they were visiting Great-Grandma, and sitting around, it occurred to them that they ought to talk about it. We said, ok, what did you decide we're doing, and they basically said they thought they were waiting for us to decide.
So, after a bit of back and forth, it was agreed that they'd come to our house. Not that I want to have everything cleaned up for their arrival, but we've been to tetheir house the last several get-togethers, and it's an hour drive out there, plus getting all of Acorn's gear into our car, out of the car into great-grandma's house, down into her basement, and back again.

Then grandpa says, "not to put you on the spot, but what should we bring"

So wait. You've just decided you're crashing my house, for a holiday we don't even celebrate, and you think I'm going to pull a menu out of thin air?

At any rate. We're supposed to call back later this week with requests. I'd already said that I wanted to make Peep Salad. We've been discussing what to ask them to bring - bread? well, we make our own here, and it's far more tasty than the cheap brown-n-serve rolls they're likely to bring. Dessert? Dessert from them will either be something store-bought with a scary ingredients label, or something great-grandma makes with no fat and no sugar - and what kind of dessert is that?

Ah well. Maybe I'm spoiled, since in my family no one would have dared brought a store-bought side dish to a family celebration. On the other hand, I'm also glad we celebrate holidays that are important to us on our own, without their drama.

Friday, March 19, 2010

Show me the panda

You know, sometimes it gets tiring, living life as your child's impromptu therapist. Every interaction, you find yourself asking how we can add therapy goals into this.

Like pointing, and naming things while doing puzzles. Can you point to the zebra? Show me the panda. Where does the hippo go?

Or when Acorn is wanting to be picked up. Do I pick him up, or make him use his step stool and climb up on the couch himself?

Some days, I just want to be mommy...

Wednesday, March 17, 2010

growing up, and milestones

Today is the 1 year anniversary of the day Acorn got his going-home ventilator. It was one of the last steps in getting him home. At the time, we thought it was horribly noisy...and when we started weaning off the vent last fall, we thought the house was eerily quiet - what a difference a year makes.

This was us then....

And this is Acorn hamming it up for the camera last weekend:

You'd never know, other than the trach nose in this latest picture, that we'd ever had all those tubes and wires; that he couldn't even sit on his own without support in that top picture.

 This somewhat dark picture is his crib, a year ago in his room in the NICU:

This was his crib just last week:

And this is his bed this week:

Our little guy is certainly growing up quickly, you know?

Tuesday, March 2, 2010

Play therapy redux

I cleaned up that piece I wrote on play therapy; it's been published over at Special Mom Talk.

We're still working out the kinks in the system. The pediatrician was better; the pulmo was horrific the next week, and the ENT that same day...Acorn was so tired that he couldn't put up much of a fight, he just cried. The endo last week, he was nervous and clingy, but did ok; the bloodwork after that was awful.

I finally got a good photo of him with his valve:

But I haven't done the paperwork and sent it in, because the printer isn't cooperating.

We're hoping to be out and about more soon - hoping the weather improves. Acorn needs someplace a little bigger than the bedroom or the kitchen to practice walking