Tuesday, August 18, 2015

Still here

We're still here.

It's been a long summer, and we still have several weeks before school starts, but it seems like it's nothing but drama.

Leaf's g-tube surgery went well....but then healing was hard to come by. She rejected all the sutures, and the surgical site broke open from the new wound.  Nearly two months of wound care were required to get it healed - and I suppose it could look worse, but it could look better, too.

Preschool is going well. They were nervous, but she's mostly been good for them. She has a 1:1 aide working on going potty and as a general extra set of eyes, but she's not taking off running all the time because they're holding her interest. Other kids want to be her friends.

Acorn, too, is holding his own this summer. Although there have been behavior challenges, by and large they've been containable.

We've struggled with what to do with the kids on weekends. I keep thinking that I should do something Pagan-like with them, but the idea of actually planning anything gets pretty overwhelming, and then I think, well if I'm planning it for them, why not plan something for more kids, and then it spirals out of control.

As for me?  I published a book (finally!).  That's been quite a whirl-wind of emotion and chaos. But it also feels good to be DONE with it. What's next? Dunno, exactly, though I've been taking submissions for a children's prayer book anthology, and my goal this year has been to realize that I'm working on the universe's timeline, not my own....and that things happen when they happen.

We ran a donation drive for school supplies for foster kids on my reservation. It was a huge success, and we're hoping to do even more next year. I want to do more community stuff.

I need more sleep. I am tired all the time, and I hurt all the time - and that's not new, but it's getting worse, so it's probably time to do something about it. I finished off my Reiki Master/Teacher certification, wrote some classes on other topics....and have done nothing with them.

I really think I want to do something other than being an engineer, but being an engineer pays too well to walk away from. That's going to take some thinking.

We're meeting with Acorn's staff and his new teacher this week, to get them all trained on his communication device. We're hoping for a really good year with staff who are ready to jump in with both feet and make things happen. Maybe I can ride that energy along with them?

Wednesday, April 22, 2015

Long Time, No Post

You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.

Except....they're not.

There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.

Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.

Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.

Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.

Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.

So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.

Wednesday, November 12, 2014

6 years

6 years ago today, Acorn got his trach.

They tell you that sometimes things happen that change your life forever - I'm never sure I believe that really, because every day changes your life forever. You're older, maybe you learned something new, whatever - every day is different, even if they often seem the same.

But his trach was, in many respects, life changing.

He survived. He thrived. I met lots of other people who I would never have otherwise even said hi too on the street - some of them have become close friends over the years. I have become a closer friend to Death than I would have thought possible.

I've learned a lot about people (both in general and in specific). Who sticks around when the shit hits the fan, who slinks out, and who hides under the desk asking if you've finished sanitizing the room yet can be surprising.

Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.

But I also wouldn't trade it for anything.

Saturday, July 19, 2014

An Ending

Today is our very last nursing shift - as of this writing, there is less than an hour left.  Leaf was successfully decannulated (had her trach permanently removed) on the 4th of July. Happy Independence Day indeed.

It's just as well - the continuing little issues of having nursing have reached a point of overload, and I need to have my house back, where things don't disappear or get used up without notice.

Leaf has been going to daycare 2 days a week for the last month or so, and enjoys it. They're nervous about her g-tube, but they don't have to use it, so it's all good.

Acorn is in summer school 3 mornings a week, and at daycare the rest of the time, in preparation for Kindergarten, Take 2. He's made so much progress with speaking lately, that I wonder how much he'll need the new communication device we're waiting on - it'll be needed, but he can make himself clear now with some prompting.

And everyone got new bikes this spring - Leaf got an adaptive tricycle, and Acorn got a 2-wheeler with training wheels. Acorn is not so sure about riding his bike out and about, but Leaf is very serious about riding hers. We're hoping to plan some outings with some of Acorn's school friends to encourage him to ride.

So....yeah. There's a lot of re-organizing to do, and re-arranging in Leaf's room, and supplies to be given away, but we are officially a trach free house again! Time for a celebration I think!

Sunday, May 25, 2014

Birthday


Today is Leaf's 3rd birthday.  We've come a long way.

For Mother's Day, her early intervention specialist helped her make the card above, with the poem about how we may be tired of cleaning up handprints, but someday we'll look back and realize how small they were.

I always have mixed feelings about that poem - they have no idea how small her handprints were 3 years ago. Her whole hand was the size of a quarter - now, finger to wrist, her hand is the size of my palm, which is not small at all. Her arms and legs were about the size of 2 of her fingers now put together. Her whole body would have fit in her bike helmet, and her shoes now are longer than her torso was then.

We are cleared for an attempt at decannulation at some point this summer, depending on schedules. She's getting an adaptive tricycle in a few weeks courtesy of her therapists and the hospital. She's signing and babbling and getting a communication device.

And she's clearly 3. The attitude shows.

So, Happy Birthday, Leaf - you're bigger than you were, but you've got a long way to go before you're grown up. I suspect it's going to go by faster than any of us expect. :)

Thursday, May 8, 2014

Growing Like Weeds

A funny thing happened recently.

I realized that Acorn can now hold my hand.

Which is not to say that he didn't hold it before...but that before, he held my hand like a toddler, holding a couple fingers, his hand (and/or wrist) completely envoloped in mine. And now his hand is big enough to actually hold my hand like everyone else holds hands.

This growth thing is subtle. It's a pair of shoes that no longer fit. Pants that were too long that now aren't. Getting to be too hard to carry up the stairs when he's asleep. Words (actual words, and attempted words) coming from his mouth. Writing his name, and walking with me in some cases rather than needing to be shepherded along. Swinging on a big kid swing (and needing 2 people to get him out of a bucket swing....not doing that again!)

Leaf, too, is growing. Tall enough to pull things off the counters. Quick to get on and off furniture. Walking for blocks and blocks - a half mile or more - rather than it being a challenge for her to just get around our block. Riding a tricycle, and cracking jokes (body and potty are two very different signs, but the words sound the same....and making you say one so she can sign the other is hilarious).

Time speeds by, and sometimes I think there are not enough photographs in the world to capture everything I want to capture of them. Photos might capture the smiles, and a video might capture their giggles, but neither can capture the feeling of the world's best hugs, and neither can capture the comparison in my head of tiny preemie hands that couldn't hold the end of my finger and big kid hands that hold my hands back.

Thursday, January 9, 2014

What You Shouldn't Do For Parents With Special Needs Children

There are plenty of posts out there on how to help  (or at least not offend) families dealing with a medical crisis.

Can I give you some advice though? Sometimes, it seems people get hung up on their perception of what families need, instead of what they actually need. And if you're on the outside looking in (and that includes grandparents), you don't know the whole story, and it's never your story - it's about the child, not about you. It may be challenging for you as a friend or family member, but you'll never grasp the magnitude of how challenging it is for the parents, and the child's needs come before your wants or your comfort.

So let's talk about perceptions.

When you think about your friend or relative who now has a child with special needs, do you think, "oh, their house is always a wreck" or "that mom doesn't dress as nice as she used to or take care of herself the way she used to," or "they don't ever go out and they used to go out every week," or some other critique of how life has changed?

Sure, maybe they're depressed - it's very common in families with complicated kids. But, first and foremost, their priorities have changed. I know in our house, the bee-bee-beep beep beep of the pulse ox is going to come before anything else, even if it means burning dinner.

Don't assume you know what the problem is if you're not talking with them, asking how things are going, and being a part of their life.

Most parents in this situation find that of the many many people who say they will help when asked are never heard from again. Whether they don't know what to do, or are afraid, or embarrased....we never know, we just know that all our good friends no longer are interested in spending time with us. We get that our lives are complicated, that we have less time than we used to, that we often cancel unexpectedly....but that doesn't really seem like the sort of thing that should impact a friendship when we have a good reason for all of that.

Want to help them?

Don't ask what sort of book you should get them, or how to drag them to therapy.
Don't ask other parents what your loved one needs.
Don't think it's about you.

Here's the thing: If you want to help, do something, don't just stand there.

Show up.

Wash the dishes, clean the toilets, or whatever else you see that needs to be done.

Show up.

Ask about the medical things you need to learn to babysit. If they have other kids, take them to the park, or swimming, or whatever.

Show up.

Interact with their child with special needs - sure, you may suck at it in the beginning, but they're still a child.

Show up.

Bring dinner. Arrange to bring dinner to the hospital, or something that can go in the freezer at home for a day when time to cook goes poof. Call and say you're on your way and ask if you can pick up anything from the grocery store.

Show up.

Are you seeing a trend here?