sara skates

Toby participated in a sled hockey clinic this weekend:

He had a total blast.  Though when he got off he exclaimed “Mom!  Those professionals make it look SOOO easy!”

He fell over a bunch of times (usually quickly followed by “I’m ok!” in his little voice) – but yanno?  Ice is slippery.  Afterwards the US National Paralympic team played Canada’s team – they are gearing up for the winter games this spring.  They’re awesome to watch – the captain of the team stopped to talk with Toby for a bit while Toby was getting his helmet on – he was awesome with Tobes.  The whole team is very inspiring – amazing athletes and way more ok with slamming into each other at high speeds than I would wanna subject myself to…

A local team is starting up for Nov and Dec – Toby is signing up.  The beauty of the sport is that it works for anyone who has arm control – folks with physical disabilities and folks without can all use the sleds and play together.  If they have a spare sled – I may get out there with them – although instead I may end up being the one to upright kids like Toby when needed.

1.  Toby funny from a few days ago:  He typically crawls down to my bed for a good-morning cuddle when he wakes up.  A few days ago, he slept in later than usual, so I was up and downstairs when he did – though I heard him so I went upstairs.  I popped him up onto the bed and jumped up myself – though, we were sorta sideways on the mattress rather than stretched out with our heads on the pillows.

Toby’s quiet for a minute and then I hear:  “Mama, how come we are in landscape mode?”

The kid entirely cracks me up!

2.  Skating competition season is upon us – I’m off to Eastern Adult Sectionals tomorrow.  I skate in one of the first events on Saturday morning – which has the bonus of being relaxed through the rest of the competition!  I only signed up for Freestyle at Sectionals – I don’t have an interp program this year, and I’ll do Solo Dance too at Adult Nationals.

Skating is going pretty well all things considered.  I have some boot issues that continue to plague me, with the added bonus of my blade “chassis” breaking a week or two ago (story on that below).  My annual winter cold-air-induced (after a cold virus) asthma has been pretty fierce this year although a new round of meds seems to be helping (Advair plus a rescue inhaler).  I’m pretty happy with where my program is at – it needs improvements but it’s getting there.

3.  My blades.  I have Jackson Ultima Matrix blades – which were recently discontinued.  In short, they have a “chassis” (part that screws to the boot, and into which you bolt the runner of hte blade), and a “runner” – the part you skate on.  I have two sets of runners as I swap them out and mail them off to be sharpened.  I noticed about a week ago – while drying my blades off – that the chassis of one skate had snapped – right in the middle, if I were to take the chassis off the boot without the runner attached?  it’d come off in two pieces.  Since this model of blades was just discontinued – Jackson scrambled a bit to find a pair to send me (they have no more, my skate shop dealt with them and they got a pair from another skate shop), they’re on their way.  The alternative would have been to wait for the new Matrix II blades – which will be on the market in a few months – BUT they’re a very different model as they don’t have the interchangable runners and I’d lose my mail-to-sharpen plan.  I am thrilled to have a new pair of chassis coming my way – Kudos to Jackson and the Figure Skating Boutique for such excellent customer service.

4.  My blog.  I think I finally decided that really?  If I only blog once a month?  That’s ok.  It’s really not worth feeling guilty about yanno?

5.  Hannah is awesome.  She has recently discovered social computing for the pre-teen set – Warriors roleplay forums.  Cats and social stuff – what’s not to like?

She has also really picked up the ball and started doing some household chores – folding laundry and doing the dishwasher – without a lot of complaining. I thank her daily – it’s entirely awesome.

6.  Knitting.  I have about a sleeve and a half left on a sweater, I have started 3 or 4 new pairs of socks, I’m working on a pair of mittens (I think rather than socks this summer?  I’m knitting mittens.  It gets cold here in the winter), and a scarf.  NO doubt there are other hibernating projects around the house.

7. That concludes this random edition!

This video was linked in Toby’s online playgroup board (a group of women who were all due the same month/year – 8.5 years later, the group persists – which is pretty awesome in it’s own right).  I think it’s a really nice way to start the year – looking at seasonal changes.  This guy took a picture every day for a year – at the same spot – and then put the stills all together into a 40 second “video”.

I tried but failed to embed the video – here’s a link:  Eirik Solheim

I have much to write, and was hoping to write some of it this week while on break.  Unfortunately, much *much* computer time was spent getting rid of a virus on the home desktop.  What a total PITA.  What finally worked was using a PrevX product – a malware scanner and removing tool.  I had been using McAfee antivirus software, but it got compromised with the virus and it was loading upon startup, but getting disabled within seconds and not allowing me to re-enable it.  I removed it and installed AVG antivirus software – which was not compromised – and it found a few trojans and viruses that McAfee hadn’t found.  I googled some of the names of the trojans, and came across the Prevx site.  I was initially intrigued by their graphic showing how much “more” they found than various other antivirus packages, and by some of the technical details explaining that it works differently than most antivirus software – rather than responding to specific named malware, it focuses on virusey behavior and thus targets the malware often before it’s even “named” and recognized.  Long story short (sorta, I have already gone on at great length), it identified over 35 additional viruses/trojans/malware and disabled them in short order.  The free download identifies what’s on your system; the $25-$30 fee gets you the removal tool.  It’s entirely worth it in my opinion.

Other news that I’ll touch on for the moment – in no particular order.

The holidays were good – it’s been great to have 2 weeks home with the kids.  Presents were numerous, the kids are happy, Hannah had many playdates; Toby had some; plus he and I did a lot of cooking.  I have embarked on a “minor” home reno plan – removing a hall closet, installing a boot bench and coat hooks instead for storage, and widening the doorway from the hallway to the den so that Toby can fit through with his walker.  Of course I thought I’d finish it while off on winter break.  Of course it’s taking way longer than that.  By removing the closet walls, there were “holes” in the floor tiling – I decided to remove the closet floor tiles add a border as a transition, and then matching new tiles.  Removing the closet tiles was a piece of cake – they popped right up with minimal effort.  Three tiles from the hallway need to be removed or at least cut down – to make room for the border – rather than being shaped to surround the former walls.  It took me two hours to get one of the three removed today – and involved eventually using a sledgehammer.  I may try using a circular saw with a tile blade on it – a messy somewhat dangerous job with flying shards of porceline – but, there are two freaking tiles to cut down (or remove) and however fun it is to get out some anger and aggression with a sledgehammer?  I don’t wanna.

Skating is gearing up for Adult Sectionals and Nationals again.  Sectionals are in North Carolina at my friend Amy’s rink – I’m very excited about returning there and spending some time with her.  The last time it was there was my first Sectionals experience – and I skated at the Silver level at that time (I have since moved up a level).  Moreover, it’s a great rink and one of my favorite coaches in the world is there – so I’ll stay an extra day or two and work with her.

Work persists at being pretty stressful, and upon return (break is over as of tomorrow) I need to have some difficult conversations and initiate some changes.  More details as they unfold – suffice it to say I am not happy with how things have unfolded due to the computer security issues from earlier this fall.

Home life is ok, the kids continue to sort through issues of their moms separating, while still all mostly living together (for lots of reasons).  It’s confusing and conflicting at times, it works much of the time, it’s difficult (muchly) some of the time.  Ultimately their needs continue to drive most of my decisions which is exactly how it should be.

Knitting has been happening at great speed.  Hannah has a new dragon scarf, Jill has a new scarf from yarn she designed at http://yarniapdx.com/in Portland (OR), I have a new sweater and another more than halfway done; I also have a new hat; I have a stranded mitten that turned out too small for even Hannah so I need to rip and restart it; and a pair of socks on the way.  No doubt I have left out a project or two.  As usual, knitting helps in so many ways – I partially feel like I’m knitting myself back together lately

Happy new year to all – and honestly?  I think my only resolution is to come to terms with how to continue to post sporadically but yet meaningfully.  Well, there are some other goals for the year – mostly related to things I have summarized above

As Toby grows, I gain little windows into his thought and growth processes re growing up with CP.  When he was a little younger, it didn’t come up often – and much of what came up was his version of his “story” – his mommy got sick when he was in her belly, and the doctors took him out early, and he has CP which means that his brain doesn’t talk to all of his muscles very well so he needs help with walking but he likes chocolate ice cream and Blues Clues and to play with his Nintendo.

In the last few months (half a year maybe?) it has changed.  He still tells his story when it comes up, though his list of likes has changed (presently, he likes playing Monopoly and figuring out how to earn money and playing the Wii).  He is “struggling” more however with his difference.

Partly, he has been in somewhat of a “self-blaming” phase – he apologizes at the drop of a hat – for “being a bother”, for “making a little trouble mama” – honestly?  It breaks my heart.  Partly, as I *so* recognize the impulse of being in the way – it’s familiar to me at the cellular level – it brings this level of memory of how I felt growing up to the forefront.  In hindsight, I can see that in so many ways I had unmet needs as a child – my introverted self was pushed to do things fundamentally mis-matched with that trait – often and vastly.  I survived, and gained some strengths on the way – but it’s interesting in a difficult kind of way to see Toby struggling with similar feelings.  While it’s in some ways different (he’s not quite the introvert that I was, although he does not have such a high need for social interaction as his sister does), and I don’t think we push him into social situations that he’s uncomfortable with – he does end up being pushed to work at a lot of phsycial tasks that are just hard for him.  It’s not a leap to me to see how he might feel similarly.

Yes, we counter these sorries with a variety of responses that I hope will instill in him that really, it’s ok to need and ask for help (everyone does); and while yes, his CP creates some situations where most others don’t need help – CP just is part of him, and we’re so lucky to have him and honestly I wouldn’t change him; and yes, parts are really hard it’s not fair is it?  I can only hope that it’s enough – it’s one of those areas where I feel fundamentally unable to give a kid all that he needs.

His questions lately center more on the whys of why he has CP – sometimes very specifically about why him in particular.  Lately, he asked asked for more facts about pregnancy and gestation and birth – I pulled out my pregnancy books (and a biology book) and showed him the pictures of gestational development – fetus to baby drawings inside a belly.    He’s at a point where I could also talk about some of the theories of why pre-eclampsia happens – while the cause of it isn’t really known, the theory that makes most sense to me is the one that focuses on some malformation of the umbilical cord or the blood supply system in the placenta – such that there’s decreased blood flow to the baby, and the body kicks into overdrive (high blood pressure) to fix that.  With the line drawings, we were able to talk about these various parts and his belly button etc. – it’s entirely awesome to see him able to grasp these new levels of information.

He also brings up how hard it is at times – and how frustrated he gets.  I inwardly cheer at this – as it  means that he’s able to vocalize when he’s not happy with how some issue is being addressed.  The latest example is how kids at school were lobbying for the chance to be the one who got to push his wheelchair behind him as he went from one classroom to another.  He doesn’t use the wheelchair – but they have had it follow him in case there’s a need for evacuation.   Toby was uncomfortable with the fuss that kids were making and how it was a big “issue” about who got to do it – in his words, he said he didn’t like the kids fighting over who got to push his wheelchair.   Once we identified the problem – various parties sprang into action pretty quickly – especially because he had voiced this not only to us but also to a few of his providers at school.  Immediately, they implemented a different plan to decide on which kid it was (they draw a stick and rotate through the class every – one kid does it for 3 days then they rotate), AND all the providers put their heads together.  Toby really keeps up with the class in his walker – and in the case of a need for evacuation?  He’ll never be that far from an exit door, and they think the wheelchair is probably not necessary.  It has been punted, and now it’s left down in the gym which is where he actually uses it.  Score one for yet one less “thing” for him to need to make his life work.  And score an extra big one for his developing advocacy skills.
He has come up with ways to go through all the normal “tantrum” things that kids this age do.  Hannah used to (and still does at times) stomp upstairs and go into her room and shut the door and put signs on it saying “Do Not Enter!” or “No MOMS allowed” with various adorable mis-spellings.  While Toby does not and cannot stomp upstairs, he gets himself into the downstairs bathroom, closes the bifold doors on the little alcove entry way to it, closes the bathroom door, and writes and tapes a sign to the door “Keep Out” – when he needs a little privacy to cry and feel like moms are very unfair and mean and all

All in all, he’s doing pretty well with this new level of sorting out his CP challenges on a cognitive level.  He’s doing great at school, something popped this year and he’s right up to speed with everyone and everything academic.  He complains about homework but that has zero to do with struggling to do it LOL – and everything to do with the plethora of other things he’d rather be doing.  I have my worries about him, but then, I have my worries about Hannah too – they’re just different.

Hannah – by the way – has become a knitter overnight   It’s worthy of its own blog post though

Tags: CP, disability, parenting

What’s a boy to do when Moms only bought one pair of snowpants which have been left at school and there’s beautiful snow to play with?

First, said boy gets bunded up to go outside anyway – in regular pants.  That lasts about 3.5 minutes.  Then, Tobes came inside and suggested that we put snow in the tub upstairs.

What a great idea!

Hannah joined in a few minutes later, and as near as I can gather (from conversation emanating from the bathroom), they were building snow-pokemon characters.

I had big plans for a newsy and picture-full post tonight – but no way.

Terry had shoulder surgery today for a long-standing injury that finally got too painful to live with.  There was more rotator cuff damage than thought from the MRI, but aside from that, everything went as expected – her bicep connection got moved, the acromion process got smoothed off, some shredded tendons got de-shredded, and the aforementioned rotator cuff got repaired.  No, I don’t know what most of that means, but Terry does, and apparently it’s good news.  She’ll be able to lift her arm above her shoulder as she heals – it has been years since that has happened!

But the very best outcome is that the anesthesiologist and surgeon put their heads together and she got a prescription for zofran – a disolvable anti-nausea med. which means that for the first time ever, she is tolerating heavy-duty pain killers.  (And both a surgeon and an anesthesiologist with excellent patient-talk skills – jackpot!)  She had geared up for mega-doses of ibuprofin and a "tens" unit to deal with the pain (the tens unit somehow disrupts the pain messages going to the brain – seeing as it needs direct skin contact and she has wound-dressing for three days, it wouldn’t have worked until the bandages come off).  But this plan is SO much better.  Anti-nausea meds every 12 hours, vicodan every 4 hours or so, she has started eating again, and while she’s not active, she is rather chipper.  She’s doing a good job of holding down our comfy recliner chair, and one of the cats is supremely pleased at this – Sweetie Pie has taken up residence on Terry’s lap.

I’m working short days from home this week and being Top-Mama for the kids – yes, I worry about work not getting done (I start teaching a course on Monday – hmm, I really should get that syllabus under control), but you know – it’ll happen.

I do have excellent techni-color knees these days from a series of toe-pick falls on ice.  For two weeks in a row on Sunday, I have caught both toe-picks in quick succession, and whacked both knees (in quick succession…).  Admittedly, much less dramatic than shoulders and pain meds – but even Terry was impressed with the colors this morning.

Toby checked out a book from his school’s library – on taking care of pet mice and rats.  He is enthralled with the whole idea – and is lobbying hard for a new pet (yeah, not so much).  His current tactics involve maybe for his birthday – which is not until March, and he’s worried that he’ll forget.  So tonight, I’m at the computer poking around for some music, he’s at the dining room table with a brownie, and he yells out "Mom, how do you spell ‘you’??".   I answer, and go find him a few minutes later.  With this note to show:

Toby ples remdynd mom that you wat a mac for yoour brthta.

(Translation though it’s probably not necessary:  "Toby, please remind mom that you want a mouse for your birthday.")

One of my most favorite things about being a mom is watching your kids grow into productive language – spoken, written, whatever.  It’s really cool.

Anyone touched by issues of girls, body image, self-esteem, etc. should watch this film, produced by the "Dove self esteem fund" (yes, related to Dove Soap).  It’s short, and quite powerful about the distorted image of femininity in the media.

Hannah was breezing through the kitchen this morning while I was making my tea.  I said: "Hey there, cute stuff."  She quipped "Hey there, Big Stuff!" and giggled and ran out.

alrightey then

Toby cuteness abounds too.  He has a new hat and mittens:

Shh, I know the mittens are too small.  I’ll redo the tops of them and make them a little longer.  I may do that to the hat too.  This too is out of handspun yarn – it was a fabulous little bag of about 2 ounces each of three colors from Tom at Phantom Farm (who has no website, alas).

And his literacy focus is darned cute:

He planted a flower and named it.  Meet Lilly.

And he very carefully decorated his night light (it has a cool write on/wipe off feature…)

Hannah likes her new hat – no mittens yet although they’re on the list of things to do:


She was rather grumbly when I took this picture, but she was way more thrilled with the hat this morning with the dusting of snow on the ground.

Back to my considerably less cute work at hand – institutional data!

The kids have the day off of school today because it is Yom Kippur. Last
night, Toby asked me about what the holiday was. I knew generally that
it was the day of "atonement", and that some folks fasted, but that’s
all I knew (I had no idea how one atoned oneself, etc.). So off to
google I went, where in very short order I had the answer. I said
something like it was a big holiday, and partly what you did was
apologize for bad decisions you had made in the last year, and I
thought it was kind of a nice tradition – because rather than just
feeling "guilty" about stuff, you started the new year from a fresh
start etc. Toby wasn’t terribly impressed with the atonement idea -
telling folks he’s sorry isn’t at the top of his list of things to do.
(He gets shy and embarrassed about it…).

But apparently the discussion made an impression on him. 

He
woke up this morning saying: "Mama, we don’t have to celebrate that
holiday today do we?????". Then – he quipped "I think I have to tell
Ms. Koontz that I’m sorry. Because sometimes at
the end of the day I leak and I don’t tell her, so she doesn’t know
that I have to go potty."  (Ms. Koontz is his aide at school, she helps him with transitions and going to the bathroom etc..)

I had to stifle some laughing…it’s still cracking me up. 

If
anyone is fasting – I wish you an easy fast. Drink lots of tea and
water I say – that helped me get through the pre-knee surgery fast. 

And for the record, Hannah really likes the idea of Yom Kippur, and would like to celebrate it as a family.