we love liam

Liam's Super Awesome Robot Tees!

2011-12-01T09:58:00.001-08:00

Liam's Robot Tees are here – and they are just the best. I couldn't be happier with the way these came out. They're printed with silver ink on galaxy blue, perfect for girls and boys. They're really great gifts – organic cotton, made here is the US by American Apparel, silk-screened locally, artwork by Liam.

All the sales from these tees go toward Liam's Special Needs Trust which we are lucky to have, but need to replenish because, truth be told, the medical expenses are vast and never-ending, even in healthy years.

In advance, a million thanks.

yay or nay?

2011-11-02T11:45:00.000-07:00

If I figured out a way to make these little kid's tees with Liam's awesome robot drawing, would you be into them? Crazy me, I was thinking at first that I'd screenprint these myself – only, wait, I don't have that kind of free time right now. They'd make the best baby and kid tees for boys and girls – in these great color combinations: silver on black or dark teal, gold on charcoal, dark teal on pumpkin.

How much would you be willing to pay for these? $25? $30? More, less? What if you knew the story behind these and that all proceeds after expenses would go to Liam's Special Needs Fund?

Tell me your thoughts, please.

where we are now, on asking and possibly receiving

2011-10-27T16:00:00.000-07:00

A little update on where we are these days. Yesterday was our parent-teacher conference. I should start by saying that we love Liam's school, without reservation or limits. For that I feel very lucky indeed. That said, the conferences and meetings can be difficult for me. Part of this – and I'm learning to be all right with this, or at least to acknowledge it – is that Liam is a different student than I was, or than I expected him to be. I think one of the most important things to remember and accept as a parent is that your child will be different than you expected, in many ways.

Here's the thing – I was a good student growing up. I remember loving school. I remember being good at reading and writing and math, not particularly struggling with any one of those. And when Liam was diagnosed with SMA, somehow in my mind I settled into the fact that school would be the place where he would really shine. Because it's clear that he's very bright, among other things (like really funny). And he does, in fact, love school – even as he faces the differences between himself and his peers, he also finds friends of all ages and abilities. I love that.

But writing, by hand, takes an awful lot of effort on his part. He can do it – and up til now it was really important to me that he learn how. What I saw in his assessment tests yesterday, though, is that it is time to get him some assistive technology/devices so that his work output can more closely match what he's understanding cognitively. His reading and literacy skills are way above average, but he's having a harder time with writing, spelling and math. And I think it's possible that he gets caught up in just getting started. It takes more effort to form the letters, to draw the ten blocks for base ten in math – and then, more often than not, he just lets his mind wander off. I'm hopeful that with the right tools, he can bridge that gap. And shine.

I had begun, even before yesterday, looking into grants for assistive devices for school age children with physical disabilities. We want to get Liam an iPad; I think there is just so much potential with it. There aren't that many grants out there – and the one that seemed promising isn't right for us. We don't even come close to qualifying, because we're not at the poverty line. They don't double check your income statement; it's an honor system that I plan to follow, of course. And yet – while Liam does have a special needs trust established, those funds are not infinite.

And so – I'm asking, wondering, again if any of you are able to help – a little, a lot, whatever works best for you. What we want is an iPad for Liam, for use at school. It is going to take considerable time to teach him how to use it effectively, to figure out how to integrate it smoothly in the classroom and with his work – but I think it's going to help immensely. I don't want to wait too long; if we do, I'm afraid that gap between what he can do and what he does actually do will get bigger. And then he'll be discouraged – which isn't anything anyone wants to see in a seven year old.

An iPad isn't outrageously expensive, particularly when you consider what it is capable of, but just to give you an idea – we have about $15K in medical expenses for Liam each year, whether he is healthy or well. Trust me, it's not the easiest thing to ask or to share – but I hope there's no harm in asking, no harm in sharing, and no pressure for you to do anything. If you want to help, you can make a donation HERE – and, in advance, a million thanks if you're able to contribute.

♥

+++ I want to add a quick update here. We went ahead and bought Liam an iPad this evening, along with a stylus pen and the most super protective case (totally necessary). We used his fund to do this, and plan to deposit any contributions made right back into it. We will be in Portland all day tomorrow for an appointment at Shriners - and so we knew we would have time to do it today (and to purchase at the small local Mac store). I'm hoping we can figure out some simple apps for writing, spelling and math over the weekend so we can get moving in the right direction at school next week! I'm excited about the possibilities.

a kitten for Liam ♥

2011-10-19T16:27:00.000-07:00

We've been talking with Liam about getting a kitten for a while now, but it came up an awful lot over the weekend. We were in Lincoln City, as part of a disability focus group – helping to assess accessibility there. It was such a good weekend, even though beaches are inherently not so wheelchair friendly or, therefore, fun for us. (All that sand gets in the wheels and the bearings ... and that's not good.) Anyway, more on the weekend here.

While we were on our way to Lincoln City, we passed a joke shop called Monkey Business. We PROMISED we could go on our way back home, on Monday. But then it turned out that Monkey Business was closed except for weekends – oops.

Liam fell asleep during part of the car ride. Since we'd been talking about a kitten, we thought maybe we'd go to the Humane Society instead. Also closed. So when Liam woke up to find out that the Humane Society was also closed – oh boy! There were tears. And there was funny ranting – NO JOKE SHOP! NO KITTEN! HOW AM I SUPPOSED TO BE HAPPY?! When we told him we could go to the Humane Society the next day, we were told – It won't matter! I'll be gone by then. I am planning on running away now. We laughed, as silently as we could.

But Ben and I went to the Humane Society yesterday and found this little darling. We got home just about an hour before Liam did and just look at his smile. The kitty's name is Flash and she's the sweetest. Liam had already named her Flash, sight unseen – in fact, without even a for sure kitten. The other name option was Chicken Strip, so I think we chose the better one, right? Ha.

a crush

2011-10-12T10:37:00.000-07:00

This photo is an old one, a very favorite.

My sweet boy has a crush an equally sweet girl. Last night Liam told me this – "I admit it, I sort of love her. There is a smile in my heart when I think of her." Only it was EVEN CUTER because he can't say admit and says eg-mit instead. Ridiculously adorable.

I know I'm biased, but this is one cute kiddo, yes?

loveliest weekend

2011-09-19T12:41:00.000-07:00

We spent the weekend in the Gorge for our friends' wedding. It was the loveliest weekend with many of our closest friends.

Liam and his little buddy, Willa.

Liam looking dapper and much cleaner than usual :)

Backyard dinner

cousins

2011-08-22T16:31:00.000-07:00

Liam was sick with some kind of horrible stomach bug most of the time he was on Whidbey Island with Ben (and I was in San Francisco) ... but he felt better the last two days and was able to get up to some sort of mischief with his cousins. I love these photos so much.

camp!

2011-07-12T12:12:00.000-07:00

Liam is at MDA Camp this whole week! The theme this year is Wild West – and my friend just happened to have this rad costume for Liam. I love my boy's gap toothed grin. I know he's having a blast – seven days of parent free FUN. (I can't tell you how much I appreciate this camp – for myself and for Liam.) He did tell me that he didn't like the breakfast, lunch OR dinner at camp (last year was his first year there) – but I told him that camp is not known for its good food and he'd just have to find something at each meal. He wanted to take a jar of garlic pickle and a container of aleppo pepper with him to spice things up. I said no, even though I actually think that's just brilliant and hilarious. (This is the same kid who would like to take a can of smoked oysters for his school lunch. He likes them so much that we put several in his stocking each December! Why is he so awesome? He just is.)

staying on the bright side

2011-06-23T16:39:00.000-07:00

The other week I caught the tail end of a rebroadcast of an interview with Oregon Poet Laureate, Paulann Petersen. She read this poem.

Miracle

The wonder isn't that lightning
strikes where it does, but that it doesn't
strike everywhere. Specifically me.
It isn't the frequency of car crashes,
but their infrequency. Traffic flicks along
in its speed and perplexity, each move,
each surge a potential disaster.

The heart beats out its strange
litany of the enormously possible,
never excluding disease and stricture.
Why does my blood run so easy and warm?
This is the wonder: me approaching
the traffic light just turned yellow,
my foot pressing my trust down
into the brake, the car in agreement
coming steady steady to a stop.

– Paulann Petersen

I am, generally speaking, a reader of fiction, not of poetry. But this poem has stayed with me. I turn it over and over in my mind as I try to stay on the bright side of things. I heard a few days ago that a young child at Liam's school passed away on Saturday. He was eleven. He had cerebral palsy. I heard that one of the kids from MDA camp, which Liam went to for the first time last summer, passed away this year. Liam was so, so sick in February – almost two weeks in the hospital. The kind of sick that un-nerved me entirely.

And yet. There are all the little and big miracles and wonders that are around us each day. I'm trying to stay on the bright side.

(And laughing – that helps, enormously. This made me laugh – scroll down to see the book report Liam wrote.)

liam's robot card

2011-06-14T21:05:00.000-07:00

I turned one of my absolute favorite drawings of Liam's into a letterpress card. He drew this just over a year ago, when he was newly 6. The lines are just as he drew them. What a robot – with lightning bolt super powers and love hearts. Available here.

seven years old!

2011-04-27T10:38:00.000-07:00

We got so lucky with blue sky and sunshine on Liam's birthday. It started to rain that afternoon, but for the scavenger hunt party, it could not have been more beautiful.

The scavenger hunt took a fair amount of planning, but I think it was well worth it. The 15 (!!) children we invited over seemed to have lots of fun. The last part of the scavenger hunt was to find your team's costume bag, put everything on and come back to have your photo taken. Some of the kids were really reluctant to put on the silly costumes ... but not Liam.

At least a month ago, Liam drew me a picture of the very cake he wanted for his birthday. It was chocolate with chocolate ganache, topped with whole strawberries. The candles had to be stuck in the strawberries. I managed to make this exact cake, though in the excitement of the party, I forgot to take a picture! I did, though, snap one of the mini-cake – because, friends, 15 kids and a few grown ups can eat a lot of cake.

legoland photo recap

2011-04-18T14:12:00.000-07:00

These aren't the best photos ever, but they recap our trip to Legoland. Liam absolutely loved it. I'm so glad we took him. That giant smile on his face – the sixth photo down – is the pure delight.

on the airplane

out the window // photo by liam

if you wear your legoland birthday button, you might just get to visit the cockpit!

emergency burger stop en route to carlsbad // in-n-out burger

totally wiped out even just from travel and sheer excitement

+++

can you smile a little bigger please? I guess not.

star wars

lego factory

new hat and sunglasses

boat ride through miniland

go on as many rides as possible // leave mama off them so she doesn't ruin it :)

allow your parents to embarrass you

sea life at legoland

fall asleep as soon as we get back to the hotel in the afternoon

+++

lounge poolside // get sunburned

legoland – here we come!

2011-04-11T12:09:00.000-07:00

We leave for Legoland tomorrow! Liam was sick all last week – and I really wasn't sure we'd able to go. We'd kept it a surprise – partly just in case he was sick, partly because we knew once we told him he'd be asking when we were going to leave every 5 minutes ... and partly because, really, how awesome is his reaction when told him yesterday?

hearts + hands

2011-03-16T14:50:00.001-07:00

I'm working on putting together another raffle, this one for relief efforts in Japan. Last year, the Raffle for Liam included prizes from over 50 independent artists and studios across the country. Over $14,000 was raised in two weeks, all of which went toward an accessible bathroom here at our home.

This time, I'm hoping we can match – if not surpass – that amount. I think together we can, I really do. What we can do together is more than what each one of us can do alone. I'm still working through the details of all this – it's a lot of organization, but I'm up for it. Emails were sent this morning and people are responding with open hearts, as I thought they would. My intent is to put this together fairly quickly, even though the effects of the earthquake and tsunami in Japan will be long-lasting. 100% of the raffle proceeds will go toward an organization like Mercy Corps, Doctors Without Borders, Red Cross – but I am not certain which one yet.

This is the print I drew and plan to print for the raffle. I'm thinking of calling the raffle HEARTS + HANDS, because that's what this is all about – from the heart, made by our hands. It may sound campy, but I believe that when we put those things together – our hearts, our hands – we can make a difference.

I found this phrase by William Shakespeare, and it couldn't be more fitting –

Now join your hands, and with your hands your hearts.

i made these

2011-03-14T11:49:00.001-07:00

I made these adorable goldfish and pig crackers last night. I'll be the first to admit that it's kind of crazy to make these, but they're really not very difficult. Inspired by this post over at Smitten Kitchen, I promptly bought the mini fish and mini pig cookie cutters. That I actually made these less than a week later is pretty awesome. I can be the kind of person who buys supplies for a project, but doesn't actually get around to it for months. Now, I know that spending sixteen bucks on tiny cookie cutters is absurd, but Liam loves goldfish and those things aren't cheap (nor, even if you buy the whole grain kind, are they particularly good for you). I'm not sure these homemade ones will win any nutrition awards, but there's nothing inherently BAD about them either – and there are only five ingredients, all of which you'll know (as opposed to some weird chemical or preservative).

Liam really, really loves these; he gobbled up some this morning and took them for his snack. I'm thinking I may make them for his birthday which is coming up at the end of next month. Either for his party at our house or for his class (so that I can be the Martha Stewart of first grade parents – yes!) Although it may be crazy to actually make these, you cannot deny their cuteness.

+++

I pretty much followed the recipe from Smitten Kitchen, with the following changes –

I used sharp white cheddar because I don't like yellow cheddar, with the strange exception of American Cheese on burgers (by the way, best burger ever, right here) and English Muffin egg sandwiches. Weird, I know. Did I mention that I made homemade English Muffins a few weeks ago and they were easy and delicious? I've been on a roll. I think you could also use gruyere or parmesan cheese, if you wanted.

I used 1/4 tsp of onion powder instead of 1/8 tsp.

I used the ration of whole wheat to white flour suggested, but I honestly think next time (which may be tonight) I'll just use all whole wheat or maybe something like spelt or kamut flour, just because.

in my spare time

2011-03-11T13:24:00.000-08:00

Inspired by this post, I ordered some tiny goldfish and pig cookie cutters. I'm really not sure WHEN I'll make these little crackers ... because I don't seem to have a lot of spare time and it takes a special kind of crazy to make your own goldfish/pig crackers, yes? But I certainly think it's an adorable idea, enough so that I bought these. Truth be told – and I apparently don't remember this well – every time I make something that requires actually measuring, rolling out and cutting shapes, I wonder if it wouldn't be more fun to cook something more, well, sloppy. I love to cook – really, really love to cook – but I fall into a little-bit-of-thing, little-bit-of-that category usually.

I've been busy in the studio lately. I've been settling back in to work and life in general after our long stay in the hospital, which I fully intend to write about. I'm just not sure when. In case I actually forgot to mention that – Liam was very sick last month with pneumonia and we spent 12 days at Emanuel Hospital in Portland. We've been home about 3 weeks now – and so glad to be here.

letter from liam

2011-01-05T14:47:00.000-08:00

Yesterday, Liam shot me in the back with his rubber band gun, right up close and it HURT! I was not pleased, but I did get this awesome letter from him shortly after:

Der Mama,

I am sary for shooting you wish a rubr bad gun. I luv you.

Liam

Yes, a rubber BAD gun! The picture below is a pretty accurate rendition of our coffee table with a stack of books, the aloe plant and the tv above the fireplace (with a fire in it). That's what Liam thought would make a really pretty picture for me, of course :)

He wanted to sign it Liam R. because there's another Liam in his first grade class. Ben told him that I knew Liam K. hadn't shot me in the back with a rubber band gun. By the way, Ben's present from Liam read – For Papa, Frum Liam K. Cute.

baby lion

2010-12-14T10:48:00.000-08:00

Baby Lion is the most loved stuffed animal around here; in fact, the only one Liam gives a damn about. He started out as the most adorable creature, but – five and half years later – he has morphed into something else entirely. It's possible that he gave Liam a rash last week. Actually, Liam has almost given him up – he stays in the closet or on the table mostly – but for a few moments of weakness and thumb sucking.

Be warned – Baby Lion is hideous. He now looks like this:

I swear we do wash him. It doesn't help. Baby Lion just developed nasty dreads and mange. We first got Baby Lion to accompany us on our trip to England (to buy his SnapDragon) when Liam was 20 months old. Our neighbor had given him Big Lion who remains in pristine condition to this day.

bright red

2010-12-07T08:02:00.000-08:00

The other day Liam said to me, "I only have one pair of shoes." This is mostly true, although he does have a pair for his braces and stander. He told me he really wanted a pair of BRIGHT RED Converse. His one pair are black Converse – if you ask me, the perfect pair of kid shoes ...

Anyway, I wanted to get Liam some new shoes. After all, apart from his excitement over his hat, his jacket (which, according to him, looks like a jacket you could wear on the planet Hoth, and his Star Wars t-shirt, the kid has almost no interest in what he wears (which is fine). I went online to Zappos and looked at the little kid's Converse. There is a bright red and a dark red – I liked the dark red better, so I bought those. They arrived on Friday, but they were definitely not the color he wanted. So they're on their way back – and thanks to a friend – I knew to stop at the Converse outlet on the way home from Portland (where we were for this). So now, the kid is very happy with his new BRIGHT RED shoes. Very bright red shoes.

legos

2010-11-11T14:01:00.001-08:00

I was taking photos yesterday of all my new A2 stationery and Liam asked me to take these of his Legos Star Wars guy. These things – Legos and Star Wars – never get old around this house.

a book for liam

2010-11-05T16:00:00.000-07:00

A Well-Balanced Tale was written by my mom. The dedication is – "For Liam, and all the children who find adventure in doing things differently.”

My mom, Amy Kaplan, writes:

“In 2005, when Liam was diagnosed with SMA, and we learned he would need a wheelchair, I began looking for books in the genre I’ve come to call kids-dis-lit. While there are many chapter-books for school children, there are few for toddlers, pre-schoolers and the early elementary grades where attitudes of acceptance-of-differences are formed.

The few books that do exist are terribly earnest, politically correct variations on, “He’s just like you and me only he can’t _____ (see, hear, walk…).” Others take the point of view of an able-bodied child: "My best friend can't _______,” or, too often, offer acceptance to the disabled only after they behave heroically. And ironically, almost none have elements of whimsy, humor or creativity, despite the applicability of the following (paraphrased) quote: A childhood that weakens the body strengthens the imagination.”

Well, here’s “A Well-Balanced Tale,” a little book full of imagination, innovation and independence. My mom hopes that all kids will enjoy it, and that it will raise awareness about how special special-needs children really are.

"In his mind, he could go anywhere."

If you are interested in purchasing this book, please be in touch with me or my mom.

P.S. The Bearded Dragon that empowers Barnaby was drawn to look like Dan Everard, the fabulous inventor of Liam’s Snappie wheelchair. And if you’d like to send a note to my mom, you can reach her at barnabyk2@gmail.com.

R2-D2

2010-10-28T17:13:00.001-07:00

Move over, Wall-E. R2-D2 is here this year. And he's awesome. And huge. Our neighbor, Olivia, is Darth Vader – who is quite small next to R2-D2.

Also, Darth Vader is wearing hot pink pants under his (her) cape. Yes!

Happy Halloween, everyone. I'll be back with better photos soon. There is double trick-or-treating here in Corvallis – downtown tomorrow and on Sunday in our neighborhood.

for glen, for liam

2010-10-22T15:06:00.001-07:00

Glen Russell was my father-in-law. He was a woodcarver and sculptor, but he also drew beautifully. Last year, Glen and I had discussed and agreed to a small edition letterpress run of this sketch he did of his son – my husband – Ben. Glen passed away in July 2010 at his home on Whidbey Island. This fall, I printed this piece in memory and celebration of Glen's life and art. There are 65 editions as he would have turned 65 in August. As was Glen's intent, the proceeds from this print will go toward a fund of his six year old grandson, Liam Russell, who was born with a neuromuscular disorder called Spinal Muscular Atrophy. It is an honor and a pleasure to be able to share Glen's work with others.

Ben is taking these to the event at the Coupevile Library on Whidbey Island this Monday, but they are also available here. A drawing by my father-in-law of his son to help his grandson – beautiful. All proceeds go to Liam's Fund.

getting ready

2010-10-17T19:39:00.000-07:00

Last Halloween, Liam was Wall-E. And it was an awesome costume. I wasn't really all that into Halloween as a kid, but Ben was. And still is. Clearly.

This year, you'd think it would be hard to top the Wall-E costume ... just you wait. Can you tell what Liam is going to be this year? R2D2. Ben and Liam worked on the costume today. (Apparently, I am supposed to be a Jawa!)

This is just one day of costume building. You can see R2D2, yes? I can. Maybe Liam will want to be R2D2 for a couple of years ... This is pretty likely. Star Wars proves to be terribly fascinating for little (and big) boys. Even when Liam was very young and had actually never seen or heard anything about Star Wars, we made him be this for Halloween.

And then there was this drawing last year.

And this one the other day.

And the full two hours Liam spent yesterday wearing his new 'Planet Hoth' jacket, hat and goggles while playing with his Star Wars action figures.

MAY THE FORCE BE WITH YOU, friends.

the bathroom

2010-09-15T11:29:00.001-07:00

Friends, words will not really be enough to thank you for all your incredible generosity. The bathroom remodel is complete and we could not be happier. I hope the photos do it justice. It's like a spa in there – and I'll admit that it inspired a house-wide cleaning and minimizing frenzy like no other.

Just so you know what we began with – a perfectly fine bathroom, but not the best use of space, nor accessible.

+++

And now all the after photos.

The wall tile is from Heath Ceramics; it is 2x8 field tile in New Pisces Green. The floor tile is from 1x1 Rounded Corner Mosaic from American Olean in Biscuit (a slightly warm white); the rounded corner squares match the existing glass block window shapes. We chose a pale gray epoxy grout for the walls and floors and we couldn't be happier with it. It ties the to different tile shapes and colors together, plus it doesn't show dirt nearly as much.

We hired a local tile person to install – Bert at Mid-Valley Tile did a wonderful job. Other than the tile, we only hired a drywall crew to match the existing plaster; my husband, Ben, did the rest of the work himself (which is in part why we were able to have such a spa like bathroom!!)

The pull-down shower bench is from The Hardware Hut. There is a fixed shower head as well as a hand held one, and built in soap/shampoo cubbies.

The lighting above the sink was above the sink before; we just reused it so I am not sure where it is from.

The glass block window is original, though we did have the spacing re-grouted in gray to match the new grout for the walls and floor.

The built-in is made from the previous existing bathroom cabinets (see 'before' photo). The toilet was existing and in the same place as before. The toilet seat support system is from Columbia Medical. We've had it for several years now and it's a great option if your child has enough trunk stability to use it, which Liam does.

The towel bars, sink, sink fixtures and shower fixtures are all from American Standard. The sink is wall-mounted which allows full access for wheelchair users. The lever handles are easier to turn on and off for Liam as well.

+++

I'm so happy to report that Liam can wash his hands by himself – wall mounted sink, lever handles – and that he now LOVES showers.

A million thanks to so many.

remodel pics

2010-08-10T10:51:00.000-07:00

Nope, clearly not done yet ... but coming along so beautifully. The Heath tile is almost complete, except for the bottom two rows which will go in after the floor. Our floor tile is a warm white – squares with rounded edges that mimic the shape of the glass blocks which are original to the house. The grout will be a pale gray on both the floors and walls; white grout gets dirty fast and always looks dingy. Maybe just a few more weeks to go!

i'm back

2010-07-28T10:16:00.001-07:00

I'm sorry for the radio silence. My father-in-law passed away unexpectedly on July 19th and we have been gone since then to be with family.

We just got home yesterday after 8 days away, so I have a lot of catching up to do around here, both in the house and studio. If you've emailed me or placed an order – or are waiting for Mailbox Monthly – please know that I'm doing the best I can do get everything back on track. I don't know how – and didn't have time – to figure out how to make my email generate an auto response so I have more than 100 emails to reply to now. I tried to reply to some with my iPhone, but they don't always go through. So thanks for your patience ...

tile!

2010-07-15T17:19:00.000-07:00

I know these aren't the best photos, but the tile work began today! The tile is from Heath and I couldn't possibly be happier with it. There's a little more right here about why we chose Heath tile over everything else. The floor tile, though, is not from Heath. It's a white tile, small rounded edge squares that will look clean and bright.

We pick Liam up from camp on Saturday morning. We've spoken to his counselor, Rachel, a few times because there have been a few Snappie glitches, but all is well. (And you know what is awesome? Even when the Snappie was briefly out of commission, there was an extra power chair that Liam was cruising around in!) Not that I'm surprised, but Liam is completely LOVING camp. Rachel reports that he has a new best friend, a little girl from another cabin. On the second day, he told Rachel, "I love waking up here!" And when she called the other day to talk about the Snappie problems, she asked him if he wanted to talk to me. He said, "NO! Get me on that racetrack!" My feelings are not hurt at all. I'm delighted he's having such a great time.

And as for me – I've been getting up early to exercise, working lots in the studio, reading my book, eating lots of pasta with nothing but garlic, chilis and parsley! Hurrah for camp! But who am I kidding – I miss my sweet boy, too.

camp!

2010-07-12T08:56:00.000-07:00

Yesterday we dropped Liam off at his first ever MDA Camp near Mt Hood. He was so excited and I think he's going to have an amazing time. Lots of people ask me if I'm nervous, but I'm not really because we know and love his camp counselor. She worked for us in Portland while she was in school to become an occupational therapist, so I know how wonderful she is with Liam already. Even if he does have a devilish streak, as shown here:

I have mixed feelings about MDA Camp – more about this later – but mostly I am excited for Liam to have this week of independence and interaction. I don't want my own hesitation about a camp specifically for kids with neuromuscular disorders to affect Liam's experience. This sums up some of my thoughts about how to best go about my life as it's turned out so far ...

In the meantime, from now til Saturday when we pick him up I intend to – go for walks with Ben (in the early morning or evening when normally at least one of would be home with Liam), eat things Liam doesn't like (summer squash, spaghetti with garlic and chilis – and that's about it since he eats lots of good stuff), read books, go to a movie in the theater (any suggestions?) and try to get caught up in the studio.

bathroom remodel

2010-07-05T13:05:00.000-07:00

We've been so busy around here that I neglected to tell you that our bathroom remodel is well underway. This photo was taken a few weeks ago, so by now there is plywood on the floor – no instant passageway to the basement anymore. All the fixtures are ordered, the drywall is being finished as I type and our tile is here.

A few words about our tile – after lots of hemming and hawing, we decided to go with Heath tile for several reasons, all equally important to me. First off, Heath has been incredibly supportive of my small business – consistent orders (they include a handwritten thank you on one of my letterpress cards with every order they send) and generous donations to the Raffle for Liam. This means an awful lot to me. Beyond that, I completely respect their work, their ethics, their intention. And I think it's important to back that up in every way possible, as they have done for me. I realize that they are a much bigger business and our tile order is just one of many – but I believe it makes a difference to stand behind those business (both big and not-so-big) that work with integrity. All that said, there is still the matter of cost. Heath is not inexpensive, and for good reason – just read about Heath's history and values. We did receive a generous discount and we are also able to save on other aspects of this project where others might not – Ben was a design/build contractor in Portland for many years before we came here so he's done a fair amount of the work so far. So, in the end, rather than compromise value or aesthetics, we chose Heath and I couldn't be happier. Our tile arrived a few days ago and it is gorgeous.

I think we have 4-6 weeks before we have a fully accessible bathroom for Liam. We are so excited. There will be lots of photos then.

Thank you all so much.

weekend photos

2010-06-21T14:02:00.001-07:00

Each year, we get together with friends for Summer Solstice in the Gorge. The photo of Liam was taken in our friend's shop. This was the first Solstice gathering without him and he was missed. He will always be missed.

something i've learned along the way

2010-06-01T10:45:00.001-07:00

These photos were taken almost exactly one year ago when we went to Netarts with all of our best friends and their kids. We rented a huge accessible house and spent the weekend together. Many things have changed since then – the loss of one of our dearest friends last summer, so this weekend has a bittersweet place in my memory.

This isn't what I really want to write about, though. The thing is – beaches + power chairs? They are not a match made in heaven. In fact, it's about the worst combination – think of all that fine sand working its way into every mechanical nook and cranny. Yet there was a beach with hard-packed sand nearby so we took Liam – and I snapped these beautiful photos. But beaches are, for the most part, not the best choice for us as a family, even though I chose to use one of these photos for the blog header here. It's mostly because the composition was so perfect and I loved the look on Liam's face. It's not a good representation of our outings, though.

I'm slowly getting to my point, to this thing I've learned along the way. Last week, Ben went with Liam on his kindergarten field trip to the A.G. Gilbert House in Salem. Though Liam had a good time, it was less than ideal. It was not a truly accessible place – and we hadn't been previously, nor did we think to scope it out. While Liam was there, he came very close to having a disastrous accident – one that was, really, not his fault. Apparently there was a deck with a ledge – bigger than a step but without a railing. Liam was trying to get around a group of adults – keep in mind, kindergarten field trips can be pure mayhem – and they weren't paying attention to him. As he tried to get by, the back casters of his Snappie started to fall off the ledge. Ben was just a few feet away and he, along with two other adults, ran over and caught it. This terrifies me. Completely. I'm not sure if it's clear, but this accident could have been awful, fatal even. Think of a 200 pound piece of equipment and a little body. I don't want to discuss what could have happened; I hate to really think about it. And yet, of course, I do. What I mean is that I am not open to discussions about whether a 6 year old can handle a 200 pound power chair. The answer is that, yes, he can – and he does it very well. What almost happened on the field trip – well, it didn't happen, and I am thankful beyond words. What almost happened is that a 6 year old made a small mistake, compounded by a group of adults who were unaware and a landscape that was neither accessible nor safe. I am not trying to place blame; it's just that my eyes were opened once again.

Liam has another field trip this coming Friday to the Oregon Coast Aquarium. We've been here several times and it's accessible and not a safety concern. However, his teacher (whom we love) was planning to take the kids to the beach for lunch and run around time afterward. The one he usually takes the kids to is a bit of a walk over a sand dune. This wouldn't have worked out at all for Liam since the only sort of beach he can access is one with hard-packed sand. I don't know why I didn't think this through earlier; I just didn't. Ben and I planned to come along on the field trip, to carry Liam to the beach if necessary. But, really, why should that be necessary at all?

Between last Friday's field trip and today, I was frustrated. The frustration came from fear, but it also came from needing to advocate for Liam's inclusion. Let me be clear – we could not be happier with Liam's teacher, his assistant and the school principal. All have been amazing throughout the school year. I was tired, mostly – tired from worrying, tired of worrying.

But here's what I did – and this is, finally, what I've learned along the way. And I learn it and am reminded of it again and again. Be the squeaky wheel when it matters. Address the situation with a clear head. Decide what the problem is and, equally if not more important, how to best solve it. Ask for help, offer solutions, be direct. It takes patience and perseverance to find the people who will help, but it's always worth it. This applies to field trips, medical insurance, hospital visits, airplane flights. Trust me, I know.

Over the weekend, I contacted several friends – one who uses the same kind of chair as Liam and lives in Portland, another couple whose son also has SMA and uses a power chair – to find out which beaches, if any, would be accessible. They all agreed that Nye Beach is the best option as it has a paved parking area that goes right up to the beach. And yet the turnaround is pretty tight and would be very difficult for a school bus to negotiate. So this morning, first up was a call to the Newport Chamber of Commerce to ask about Nye Beach and accessibility. They gave us a bit of a runaround – directing us to a Parks and Rec person for another beach entirely. But he suggested we call the Newport Performing Arts Center, which is just 4 blocks from the Nye Beach access. I spoke with a lovely lady there who said we could have the two school buses park in their lot. She said from there it's a short walk to the beach access, plus there is a glassed-in structure at the park across the street that the kids could eat in if it's raining (very likely given the weather as of late). I called the Chamber of Commerce once again to confirm that the kids could use the park building to eat lunch (yes) and that each sidewalk intersection has curb cuts for wheelchair accessibility (yes). Ben took all this information, along with contact numbers, over to Liam's teacher. So we're all set for this field trip – and we're better prepared to ask the right questions about all the field trips still to come next year and the year after and so forth.

And so, to me, even though I've yet to check any of the other studio related things off my list today, I feel very productive.

raffle winners

2010-05-24T11:25:00.000-07:00

Thanks for your patience, everyone. I've been really busy – in a good way – and finding time to compile all the names from donations, blog posts, twitter and facebook took longer than I'd hoped. I wish that every single person who donated could win something from the raffle – because the prizes are so, so good ... but that's not the way it goes. Winners have been drawn, at random, and I'll be emailing you if you've won something either today or tomorrow.

I've already written about how incredibly grateful we are for your support, but I'll say it again – thank you. This blog and the raffle have brought in a total of just over 15K, all of which will go toward the bathroom remodel. This is amazing.

unprepared

2010-05-14T09:43:00.000-07:00

Some morning are hard and they leave me feeling so completely unprepared for being a parent. Sometimes I wish, just a little bit, that I could go back to when Liam was tiny – a newborn, like in the photo above, taken his second day in the world – when we didn't know what was to come, when the world stretched open wide, full of possibility. Of course, I don't really mean this; it's just a figure of speech. The world is still filled with possibility, for each of us in my family, just different ones.

It's just that the conversation on the roll-stroll to school this morning was really hard for me. I don't want to go into the nitty gritty details – but it was about Liam's increasing awareness of disability and what that means. That some are visible and some are not as clear. That he cannot walk, even though he wishes for it. And that it just isn't fair. And it's not as though Liam just suddenly became aware – he has known these types of truths from a very young age. It's just hard to be honest and open and have my heart breaking at the same time.

And so, yes, I sometimes wish – just a little – that life was different, even as I am aware of how lucky we are in so many ways. I don't think that our life is good in spite of Liam's diagnosis of SMA. I don't think it's possible to separate these things, to pick and choose. But some mornings, like this one, I wish I could go back to the days when Liam was a little baby.

Still, all that said, today is just a little bump, a hiccup. Liam still has the most wonderful laugh, captured here for the first time. This is always – ALWAYS – enough.

soon

2010-05-13T13:16:00.000-07:00

If you made a donation to Liam's Fund before the giveaway started, look for a little package like this in your mailbox soon. What's inside is a surprise, but the stamp on the back was easily done with a set from the local office supply store, similar to this one. After all, it's not practical to letterpress print EVERYTHING!!

I'm just waiting for the perfect stamps to arrive from USPS – these two pretty ones that add up to the exact postage needed. The butterfly one is released on Monday so I should have these all in the mail to you by the middle of next week. Thanks for waiting, many thanks for helping.

2010-05-11T11:40:00.000-07:00

Sending love to so many for your generosity and kindness. The giveaway ends today and I'll be busy with the logistics of it over the next week or two. If you win something, I will be in touch as soon as possible. If you do not win anything, please know that your donations have been a true gift to our family. All the details, like how much the giveaway brought in and the bathroom plans will come.

Plus some new card sets will be available soon – featuring the charming drawings of Liam (sneak peek of his writing above) and letterpress printed heart wreath cards (that's by me, aka Satsuma Press, of course). The proceeds of these sets will go directly toward Liam's Fund as well.

First I need to catch up with studio work and catch my breath.

A million thanks.

a few more days!

2010-05-08T21:17:00.001-07:00

UPDATE // I decided to extend the giveaway through Tuesday because, hopefully, many of you were out and about this weekend.

There have been a few additions to the prizes since the giveaway launched two weeks ago. Please click on the image above to see the updated flyer in a new window, and then once again to increase the size and legibility. You can see all the giveaway prizes in detail right here and, in case you're new to this space, more details on who this is for and what this is all about.

I wrote a bit about this already, but again, in short – thank you all so much. The giveaway has been hugely successful – more details on exact numbers and all that in time. I suspect I'll be fairly busy getting everyone's names into the giveaway pool after tomorrow, in addition to continuing to catch up on Satsuma Press work.

xoxo

thank you packages

2010-05-07T11:09:00.001-07:00

I know. It's taken me a while, but the little thank you packages – at least the first round, to those of you who donated before the giveaway began – are almost ready to go. Hurrah!

the smash-o-matic by liam

2010-05-06T15:41:00.001-07:00

Yesterday after school, Liam and his buddy watched Wallace and Gromit. They love it and so do I. After dinner, Liam spent a good 20 or 30 minutes intently drawing various contraptions.

Introducing the SMASH-O-MATIC! Apparently it sucks up this robot dog (see drawing, couldn't be clearer) and takes it down a conveyor belt, through a spiky smasher thing, down another conveyor belt, through ANOTHER smasher ... and then spits out the robot dog as little cubes. Awesome.

I didn't take a photo, but Liam also drew a MOP-O-MATIC, for mama, of course. I mop all the time. He knows me so well.

P.S. Please don't forget – the giveaway ends Sunday. Click here for the list of prizes.

more than I imagined

2010-04-29T16:33:00.000-07:00

To write that the giveaway for Liam – and fundraiser in general – has become more than I imagined is a huge understatement. The truth is that I have been stunned by the amount of love and goodwill that has come our way in the past few weeks. The truth is that I'm actually sort of a shy person by nature; that is to say, in a face to face meeting, I might seem slightly removed when it's mostly that I am really, really awful at small talk. I don't 'network' – not really, because it sounds scary and terrible. And yet it turns out that there are so many of you who truly want to help – those who are contributing to the giveaway, those who are donating to Liam's Fund, those who have helped this all spread like wildfire, those who take a moment to send an email to say hello. And here, in this space, I feel more free – to both share our story and to ask for help. It is amazing what can happen when you ask without expectation and with honesty; it is amazing what is freely and happily given by so many. So to all of you out there, all over this country and the world even – thank you for your kindness. It renews and inspires me.

So many have written these very lovely emails to me about what an inspiration I am and how beautiful Liam is. That latter part, I won't lie – I agree, though, yes, I'm biased. But that first part: honestly, I think – without meaning to disregard the goodwill meant by it – that I am doing what so many parents do all the time. Yes, different circumstances – ones I never imagined would be mine – but in the end, I love Liam and I am doing my best to advocate for him – in school, in hospitals, with insurance, in his environment. This is what parents should do, when they are able, however they are able. I think that's the best we can do, really.

When I was pregnant with Liam, I hadn't a clue about what being a parent would entail. I had a 26 hour labor and natural birth at home and I thought that was by far the hardest thing I'd ever do. When we were waiting for an appointment with a pediatric neurologist when Liam was 14 months old, I thought that was the hardest thing I'd have to do. When my midwife (and friend) told me that there was so much to learn from this, I didn't know that this was really true. I didn't know and I didn't see how. I didn't know that I'd cry so hard the day I had to learn how to tie Liam's Snappie down in our van. I didn't know that I'd spend so much time fighting our insurance. I didn't know Liam would spend nearly a week in the Pediatric ICU when he was three. But, really and most of all, I didn't know that there were so many good things still to come.

Just to be clear – our days are filled with many of the same things you might experience ... Good choices are made; mistakes are made. Small decisions, big decisions. Some days I am grumpy, or Ben is, or Liam is. There are days when I lose my temper and shout because Liam takes 10 tries to get on his lift for the Eurovan and each time leaves yet another scrape on the long-ago-pristine door panel. Or when he runs through the mud at full speed when I've just specifically asked him not to. There are days when he gets to watch movies (yes, plural) because I have so much to get done. He's six, I'm thirty-four – we have opposing priorities sometimes. But he eats a good home-cooked meal six nights out of the week, at least, and he gets a bedtime story and song – these are givens. There are nights when I fall asleep next to him because I am so tired (though usually that's Ben, not me).

There are days when I worry so much about Liam that it hurts. There are days when my heart breaks for him and there are days when I don't want anyone's sympathy. Sometimes those are the very same days, really. I try to remind myself that my fears are not his fears, that my worries should not be his worries, and that even though he is well aware of the things he cannot do, the ways in which he is different, he is a happy and much-loved kid. Good days and bad days – that's the way it goes. I'm not religious so I don't think we are blessed. I don't think Liam is a little angel (because sometimes he's downright devilish), but I do think we are fortunate in many ways.

So again, I'll end how I began – all of this is more than I imagined. Thank you so much.

giveaway goodies!

2010-04-27T22:05:00.000-07:00

[ It's been another long day ... earlier I realized that I posted this entry to my other blog. I kept it up there, but figured out I could just cut and paste it with the links still in tact – hurrah! So here it is now, in the right place ... ]

+++

Thanks for your patience, friends. Here is the giveaway goods list! This is a LONG post and, if you're anything like me, you may get easily sidetracked when clicking on the links. You may want to set aside a bit of time to browse this...

The first link provided is to the artist/studio's website; the second link is to the online shop or, in some cases, to the exact giveaway goodie. Please note that the images I chose for this post are not always of the exact giveaway prize. In many cases, the selection will be your choice – or I may have chosen an image that represents the work overall. Each artist and their donation is separated by +++ so it should all be fairly straightforward. Last of all, many of the artists listed below are contributing more than one thing. In each of these cases, there will be more than one winner from that particular artist/studio.

Enjoy!

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abby try again

two 8x12 prints of choice

+++

angela liguori

one spool each of bianco e rosso and bianco e nero twine

+++

ashley goldberg
one $20 print of choice

+++

ban.do

heart s.

+++

bliss

two 8x10 prints of choice

+++

brookelyn photography

two prints of choice

+++

byrd + belle

iPhone cover + $50 gift certificate

+++

chewing the cud

two GIVE LOVE reusable fabric wraps

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elisabeth bentz

linen table runner

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elizabeth soule

6 prints – owl on book, deer and vines, little bear, fox, swan, gnome and deer

+++

emersonmade

5" red poppy

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enormous champion

silver and gold keys print + animals amassed tea towel

+++

happy tape

mixed 5 pack

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heart of light

striped grosgrain ribbon sash + matching rosebud hair pins (these are brand new items, not yet in the shop)

+++

heath ceramics

wide summer bowl + tall summer bowl + deep serve bowl (linen) + large serve bowl (peridot + linen) + vegetable bowl (french grey + persimmon)

+++

herriott grace

set of three tiny teak spoons

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inklore

$40 gift certificate

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ink + wit

two EVERYTHING COUNTS posters

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jen causey

two 11x14 prints of choice

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kari herer

three 8x8 or 8x10 prints of choice

+++

lara cameron

$50 gift certificate

+++

lauren haupt jewelry

draped silver or gold necklace

+++

lisa solomon

one lined tote + one t-shirt

+++

max wanger

two 8x10 prints of choice

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modaspia

one fiji dress + $50 gift certificate

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moop

organic red market bag

+++

mudpuppy

three wee bud vases with choice of string color

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paige russell

cream and sugar set

+++

paperfinger

custom return address stamp

+++

pigeon toe ceramics

large tripod bowl with wheat glaze

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pikku

assorted stationery + happy days calendars (daisy do print)

+++

pistachio press

three sets of letterpress cards of choice

+++

plainmade

false knit scarf + bowerbird wrap (color of choice)

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port2port press

6-month subscription to the card society

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postal press

imagination print

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rifle paper co.

$25 gift certificate

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sara paloma

$100 gift certificate

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satsuma press

three 3-month subscriptions to mailbox monthly + five perpetual calendars + ten sets of letterpress printed stationery (flowering rush, ginkgo, maple seeds, poppies or peony)

+++

shanna murray

magnolia garland/you are loved decal + all the stars decal with you are my sunshine decal

+++

sharon montrose

four 7x8 animal prints of choice

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shim + sons

office goodies set – mouse pad, pencil cup, push pins

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skinny laminx

two-pack of tea towels

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stephanie congdon barnes

custom pinecone, choice of palette and fabric (wool, silk or linen)

+++

stone + honey

$100 gift certificate

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studio olivine

three wall prints (aviary, foal, fawn)

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sycamore street press

three sycamore club prints of choice

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the wild unknown

flowers and feathers print

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tokketok

four sets custom note cards, 15 cards per set

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twig

two ana ventura 'love' letterpress prints

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twigs and honey

$50 gift certificate

+++

two brunettes

botanical print inspiration poster

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uniform natural

teal gauze scarf

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yu-i chan

come darkness, before the storm print + come darkness, waves 03 print

+++

the birthday party

2010-04-26T10:46:00.000-07:00

Liam's birthday party was on Saturday. Just to be sure no one missed it, this is the sign he made for our front door. I made the paper flags from standard construction paper and some red ribbon. I didn't worry much about making the shapes the same size and I just stapled – or 'stabled' as Liam says – them to the ribbon. I think they're adorable and they took no time at all; to be honest, I made them about an hour before the party started.

And just to be extra, extra sure no one missed the party, we hung a string of balloons outside. Nothing says birthday party like balloons, right? You can ignore the fact that we still have our christmas lights up. I like them all year round, but maybe we are just too busy to take them down. Maybe both.

This was the art project I set up for the kids – in total there were two girls and 5 boys. Now I know this might be controversial, but all I'm saying is that the two girls spent nearly the ENTIRE time carefully making their crowns and masks. The boys, every one of them, spent about 25 minutes total – first sticking some stuff on the crowns haphazardly and then painting their masks to be bloody, gruesome things. And then they started to run aroud and freak out. Liam got a slot car set up from his papa for his birthday and so that was very entertaining. After the presents and cake, there were still about 20 minutes to go so we took them all outside for an impromptu relay race. That took about 3 minutes. So I brought out a carton of raw eggs and they had egg-balancing races on the sidewalk. There's a lot of egg out there now, but it surely brought concentration, smiles and laughter.

So – sixth birthday party, a success! Liam watched Wallace and Grommit – instead of E.T. – on Saturday evening and I fell asleep right next to him about 10 minutes in.

P.S. Details of all the goodies for the giveaway are coming just as soon as I can manage!!

birthday boy

2010-04-23T16:24:00.002-07:00

early morning present opening!

cupcakes, homemade (twice, as in don't make thing you've not made before at 11 pm the night before), chocolate with chocolate ganache frosting and sprinkles

we are off to eat burgers and to try to rent E.T. after that.

THANK YOU, EVERYONE. Oh, and also this –

THANK YOU FOR ALL THE BLOG LOVE TODAY. As a small way of saying thank you, I'll enter you in the GIVEAWAY if you post or twitter about this. Please send me an email to let me know you've done so, along with a link to your blog post. This means that no purchase or donation is necessary to enter or win anything offered here – hurrah for spreading the word.

a super giveaway for liam!

2010-04-21T20:14:00.000-07:00

please click on the above image to see it in a new window and then click once again to increase size

+++

I've been organizing a giveaway for Liam over the past ten days – and I am both amazed and inspired by the support I've received from every single person I've contacted. Just take a look at the list of 52 artists and studios above (or below) and you'll see why. There is an overwhelming amount of talent here. The work being donated for giveaway prizes is made with love and integrity – and I'd be happy to receive anything at all from any of these fine people.

The giveaway kicks off RIGHT NOW! I meant for it to start tomorrow, Friday, April 23rd, which is also Liam's 6th birthday. but it's just as well that it's today. Tomorrow I will be delivering cupcakes – homemade, chocolate, with sprinkles, as requested – to Liam's kindergarten class and getting ready for his party the following day. The raffle will run for just over two weeks – til May 9th – and I hope it is a smashing success.

As for the logistics of the giveaway, here's how it works. If you make a $15 donation to Liam's Fund, you'll be entered in the giveaway once. If you make a $25 donation, you'll be entered twice. If you make a $50 donation, you'll be entered five times. You can make your donations here – just to the right, along the sidebar, are donation buttons that will take you straight to PayPal. This works much like a standard blog/shop giveaway, like this one I did at the end of last year. However, instead of having you email me again or leave a comment here, I will collect your email addresses via your PayPal donation in the same manner as I would blog comments – and contact you if you win something from the giveaway.

THANK YOU FOR ALL THE BLOG LOVE. As a small way of saying thank you, I'll enter you in the giveaway if you post or twitter about this. Please send me an email to let me know you've done so, along with a link to your blog post. This means that no purchase or donation is necessary to enter or win anything offered here – hurrah for spreading the word.

At the close of the giveaway, all entries will be put into a large bowl and mixed around. The winners will be chosen randomly, the old-fashioned way, from the bowl, by a person, possibly Liam if he thinks it's fun. (Okay, most likely me.) Many people are contributing more than one item so there are well over 51 lovely giveaway prizes. You could receive something really beautiful; you could even receive more than one lovely item – and that would be really exciting. But even if you don't get anything this time – and I know, not winning stinks – please know that 100% of your donation will go toward Liam's bathroom remodel this summer. So in advance – thank you, so much.

I will be posting more detail about the specific giveaway goodies – in some cases pre-chosen by the artists, in others gift certificates of varying amounts – as soon as I possibly can. In the meantime, below is a list of all the participating artists, with links to their online shops or websites.

abby try again // angela liguori // ashley goldberg // brookelyn photography // ban.do
bliss // byrd + belle // chewing the cud // elisabeth bentz // elizabeth soule
emerson made // enormous champion // happy tape // heart of light
heath ceramics // herriott grace // inklore // ink + wit // jen causey // kari herer
lara cameron // lauren haupt jewelry // lisa solomon // max wanger // modaspia
moop // mudpuppy // paige russell // paperfinger // pigeon toe ceramics // pikku
pistachio press // plainmade // port2port press // postal press // rifle paper co.
sara palom a // satsuma press // shanna murray // sharon montrose // shim + sons
skinny laminx // stephanie congdon barnes // stone + honey // studio olivine
sycamore street press // the wild unknown // tokketok // twigs + honey
uniform natural // yu-i chan

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Please help get the word out – tell your friends, family and co-workers about the GIVEAWAY FOR LIAM. Tell them about the lovely things; tell them what it's for. Feel free to post on your blog, facebook page or twitter. Remember – it starts this Friday!!

an update

2010-04-19T12:25:00.001-07:00

A few updates, friends.

1. I haven't forgotten about the thank-you packages from Satsuma Press from those of you who have made a donation. They're coming, I promise. This week, I hope. There are well over 100 to send out, perhaps close to 200 even!

2. There's an interview with me about Liam over here. Thank you so much, Sheri, for taking the time to do this.

3. I've been organizing a raffle to keep the momentum and interest going. So far, I have over two dozen artists participating. I admire the work of each and every one – so I'm really excited and I think you will be, too. I'm hoping to start it this Friday which also happens to be Liam's sixth birthday. (Click over to the interview above – at the end you'll see who is donating to the raffle. There are going to be lots of lovely things.)

thank you

2010-04-12T11:08:00.001-07:00

[click image above for larger view]

I'm not sure if I can really let you know how amazed we have been by the positive response to this new space for Liam. So many people posted and tweeted about it, and we've received over 100 donations since Friday. Thank you so much for everything. There were so many more donations than I expected; it may take me a while to get caught up on the promised thank-you gifts from Satsuma Press. They'll arrive, but it may take a week or more.

The photos above are so funny to me. Liam is just about 19 months old in these, taken shortly before we flew to England to get his SnapDragon. I was trying to get a perfect photo of him with the 'thank you' sign, but instead I got these. I actually think they're perfect in their own way – and definitely funny.

The video above was taken around the same time as well. A million thanks to you all.

hello

2010-04-06T21:44:00.000-07:00

[click image above for larger view]

My son, Liam, has a neuromuscular disorder called Spinal Muscular Atrophy Type 2. He was diagnosed when he was 14 months old; we bought him his first power chair just 6 months after that. More than four years later, he still uses the same chair, a SnapDragon from DragonMobility in England. It’s an incredible piece of equipment that allows Liam to access and explore his environment as fully as possible. His Snappie has an elevator that lets him, by himself, go down to floor level and back up again – to play or to pick something up. He can race around outdoors. He can go on a bumpy path to pick blueberries in the summer. He can join his peers at a little table. This type of engagement with the world and the people in it is priceless; it has helped make Liam the happy and outgoing child he is.

We moved from Portland to the small college-town of Corvallis almost two years ago. Our single level home here has plenty of open space that allows Liam the freedom of movement and play that we want for him. This summer, though, we are planning to remodel the bathroom to be fully accessible. We'll take out the bath tub and replace it with a walk-in/roll-in shower with a built-in bench seat. Liam will always require assistance to bathe, but it's been well over a year since I've been able to safely and comfortably give him a bath in the tub. We'll also install a wall-mounted sink so that Liam can drive up to it himself and wash his own hands easily. Our wish, as ever, is to provide Liam with as much independence as possible in as many ways as possible.

We are very fortunate to have had a special needs trust established for Liam shortly after his diagnosis. This trust has provided so many essential things when our insurance has failed to come through – Liam's SnapDragon; various respiratory and durable medical equipment; a scary week long stay in the PICU in Portland; occupational and physical therapy ... As you might well imagine, these things add up, quickly, relentlessly. The bathroom remodel is just one expense, with others sure to come.

This is the first time we've chosen to reach out to a larger community to ask for financial help. It's difficult to ask, but we all need help, in one form or another, from time to time. Four years ago when Liam was diagnosed, Satsuma Press was just a vague dream and I had never read a single blog, let alone thought I'd ever start my own ... I have been astonished, again and again, by the kind of community that exists online, linking people together from points all over the world. When I think of this, I am hopeful that the word will spread and that people will be moved to help. That said, please forward this, post about it on your own blog, tweet about if you like. Please know that we don't expect this; we will be delighted if you are able to help, whether that is financially or by keeping the momentum going. We have no idea what sort of outcome can be expected, but I am full of optimism. Every bit, small or large, will help.

In advance – thank you, thank you.