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


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?

Monday, December 16, 2013

It's Complicated

This weekend Leaf has been in the hospital. We originally figured she had a little cold that was setting off other issues, but our lovely little girl managed to show no virus activity from her swabs....not the first time she's done that and still been very sick, so whatever.

The thing is...this sort of experience always make me grieve for others, not so much for us.

We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.

Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.

But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.

It's all about perspective, and it's a complicated way of looking at the world.

Monday, December 9, 2013

When Accessibility is an Afterthought

Yesterday we went to a local Pagan event, held at a nearby city's community center.

The event was exactly as described - lots of cookies on tables, walk around and fill your box of cookies. The cookies have so far been very tasty, and the money raised is going towards funding a building for the local Pagan community, which will be quite welcome.

What was unexpected was the method of getting to the room that the organizers found themselves in:

Yes, that is our double stroller, exactly as long as the elevator is wide, and almost as wide as it was deep. There was not room for 2 adults in the elevator with the stroller - in fact, it was a challenge for me to push the button myself once we were wedged in there.

You know, I get that we're a little strange taking the kids so many places, and that the fact that my 5 year old is often in a stroller is a bit strange too (though if you'd ever chased him through a mall, or had him bolt in a parking lot, you'd totally get why he's there).

But I wonder how many people besides us have found this elevator challenging?

It was clearly put in sometime after the building was built.And I suppose it's better than nothing. But still....

Monday, November 25, 2013

Parents and VIllages and Pagans

Lots of thoughts this week about how Pagan groups accept (or don't) the children of their members, and how that plays out at festivals. We are not at a point in our house where attending events regularly is doable in any sense of the word. But even if it were, I suspect we'd avoid most groups and events for the foreseeable future because of the way that most groups handle children.

There are basically 3 ways Pagan groups and events handle children. (1) No children, (2) Children are allowed if they can follow an adult standard of behavior that parents are expected to police, (3) Your kids, your problem - you want to let them run loose, great, if not, you figure out how to keep them under control.  There are a very few places that offer some sort of childcare, and when they do, it's usually organized by a parent.

Festival wise, I have a hard time justifying spending several hundred dollars to attend a weekend festival where I'll be lucky to participate in more than 2-3 scheduled events. If my husband and I each take a shift with both children so the other one can have a child free shift, and then we each take a shift with each of the children to do something fun with them independently, that's 4 shifts, and by the time you add in meals and a super early bedtime for Acorn, and that's probably most of the day.

Additionally, it's not like my children are old enough for me to leave them in a tent asleep while my husband and I do something fun after dark, so evening things are basically out, unless we each take a night solo (and really....what's the fun in that?).

This even boils over into teaching - because if I use one of my slots of time with no children to teach, then I really have very limited time to enjoy the rest of the event.

Even with childcare...we're probably still in that sort of spot, though Acorn could probably manage childcare if they were prepared for him (though given the difficulties finding him a babysitter, I'm guessing that most places still wouldn't keep him). Some places assume a more laissez faire, free range sort of child policy, and my kids are just not safe that way at this point - I desperately wish that they were, but to practice free range parenting your child has to be able (and willing) to consider the best course of action, and Acorn is not there yet - and Leaf is too young to expect that.

For local ritual groups, the same situation would apply either I have to find someone to babysit, or I have to find a way to convince my children to be still and quiet at all times, and to only act appropriately....and let's just say we're not there yet.

I wish more Pagan groups would get on with realizing that parents can still be active members with the right support, and that children aren't an annoyance to put in the closet.

I strongly suggest that you read Don't Leave Your Friends Behind, which is a book about parenting and social justice movements if you're interested in other ideas for how we could do better for families. (that's an affiliate link, by the way).