Saying "thank you"

I've never, so far up to now, had myself sufficiently organized to start to build a habit of thank you notes with Liam.  If I'm being honest, my own track record for written thank you notes, which 7-8 years ago was pretty reliable and natural, has fallen by the wayside more than I would like.  Same with my ability to remember most birthdays and other memorable days with sufficient clarity or advance warning to do much about it.  Another change. 

A digression: both these things fell away when Will first started getting really sick.  There were all these appointments and treatment so get through, and trying to understand it all so I could be a helpful and responsible advocate took so much bandwidth, really it took all I had left after work.  And for pity's sake that was just me.  I wasn't sick, or facing painful and unpleasant treatments, or confronted so baldly with the uncertainty of my life span and future. I shudder whenever I think about what it must have taken from Will, and remain amazed at how resilient he was.

So Liam is working on thank you notes these days.  I outline the letters and he colors them in.  This note is for his lovely school teacher who gifted him a piece of rose quartz.  On the inside he tends to draw a picture. These days trees are popular.

On the back he writes his name and I usually write a short note.  We've made 3 or 4 so far and I hope to continue.

Patchwork

A few weeks ago Liam and I and the vegan were on the way to my parents house to watch the landing of the 2012 canoe journey (Really, you should click this link, it is an amazing thing and was a privilege to see.) and we stopped at an estate sale.  By "stopped" I mean we followed the signs at least 15 minutes out of town to a little lake were the estate sale people were dismantling the contents of this house / life out onto tables and boxes and piles, and marking everything with masking tape price tags. We were there on a Sunday afternoon; everything half price.

It turns out this was the same little lake that I lived on briefly when I was just out of college and working for the first time.  So long ago.  Vegan said, I remember hearing when you were living out here.  You were with . . . then.  Yeah, I remember; long time ago. . .then we moved to that house in town and you moved into the garage apartment.  Right, and I parked the sauna in the back yard.  Yeah; I remember that sauna, you were with . . . then.  Right, she married someone who sells cars. 

These estate sales are strange to me.  I think, where are the family / children / friends / who are meant to take custody of this stuff?  I look around and wonder who went first, the husband whose tools we are sifting through in the garage or the wife, whose measuring cups we are sorting through in the kitchen.  I wonder what year they took that vacation to Yellowstone and brought this book home.  When they last looked at all these slides or listened to all these records.  Whether they bothered to put up all those Christmas decorations in recent years, or if they'd just been in the box.

These grandmother's flower garden hexagons were stuffed in a zip-lock bag on a table with holiday napkins, random guest-type towels, and assorted other stuff.  They weren't on the sewing table, which I had already rummaged through for notions and dressmaker's paper.   Twenty dollars, except I paid ten.  I wasn't going to take them home but ran back in to get them at the end.

I didn't realize until we got to my mother's house how many there were.  Twenty-five, about.  All hand sewed.   The needle and thread were still in one of the blue ones, almost done.  The hexagon template tucked in with the work. 

So I guess I'll try to pick up this work in progress and do my bit.  Finish the blue one.  Find some cotton and cut the white hexagons and start putting it together.  Find out if I'm capable of these seam allowances which appear to be all about one-eight of an inch.  Crazy straight and even.  I'll need to track down a thimble.

I wonder if she loved the sewing or if it was a pain in the ass to her.  I wonder why she put it down; and who rolled it up and stuffed it into the zip-lock bag.  How it came to be unfinished.

Yesterday on the way back from a dinner something the vegan and I decided to try to drive back to his house through the forest.  So in we go and up, up, it's all managed land, a mix of what passes for clear cuts these days and deep woods.   Down and around following the line of some creek or another, out onto the gravel roads, and then up again, skirt the top of the peak, and start to work our way around the next hill.  We take the downhill road, getting dark now, but we're close.  It's a less traveled road and we go through tunnels of branches, leaves and sticks whacking the car on all sides.  Then, just in the twilight: tree across the road.  And us without a chainsaw.  We turn around.  Go back to the last fork.  Take the uphill road this time; a mile to a dead end.  Turn around and head to the next fork back, debate.  Try the downhill again.  Find ourselves following a different creek bed, down a ways and through a campground.  It's dark now; the sparks from the fires make a surprising light.  The vegan says, you know, I think this is Porter Creek.  We're going to come out of the forest not eight miles up the same road from where we went in.  Except two hours later.   And we did.  Drove home on the main roads and watched for meteors.  

Will's birthday today.  I have a long day at work up north.  We'll get take out, and GG and GoGo will come over, and I made two very small yogurt / tea cakes.  One vanilla chocolate chip, because Liam will like it.  The other lemon with rosemary because Will would have liked it. 

In which Liam and my mother make the same face

We took a lot of pictures at Liam's birthday at the end of June.  Lots.  And GG was kind enough to volunteer to come to Liam's kid party and take pictures there, so we have lots of those too.  I've finally started to go through them all, and my favorites so far by far are these funny shots of Liam and my mother making the same face, not once, not twice, but basically in every single picture. 

So funny. We also took photos with his other grandparents, GG, GoGo, Grandpa.  He is so blessed and lucky to have these people love him so very much.

I am reminded that a month and a half ago when these pictures were taken Liam was going through a very grating "I must wear PJs all the time" phase AND insisting that they be fleece, footed PJs even though it was trying to be summer.   He seems to have pretty much graduated from that now, or as he likes to say "Mommy, I've retired from that."  Although, really, he does still love to wear PJs, I just put all the footed, fleece ones away in the top of the closet until fall.  Chose your battles.

In other news, we took the last of the pea plants out just in time to plant more in hopes of a batch for the fall.  I have officially declared myself serious about getting rid of the slugs and garden snails after they ate two of the five broccoli transplants down to the stems and one of the brussels sprouts.  Except for my remaining hopes of tomatoes, and a few cucumbers coming on, we seem to be moving directly from the spring garden to the fall.  The slugs and sails also ate all three plantings of green beans and most of the zucchini flowers so...you know.

Thank you for all your kind thoughts and intentions for Lisa.  She died that Monday, going on two weeks ago now.  Her memory will be a blessing always.  Later that week I found out the spouse of a dear friend of mine at work was dx with surprise stage 4 lung cancer and is not responding to chemotherapy.  (She got bronchitis last year but got better; she is in amazingly good shape but how strange she started to get out of breath hiking; she got -- finally -- a chest xray; there you have it.)  He is a scientist and a biologist, like me.  (Sort of, at least, I was when I went to school and I'm still wired pretty much that way.)  He said: she's probably going to die soon.  You can see straight through his eyes into his heart when he says it; watch as everything starts to go upside down.

So, so fragile.

Sending much love to dear Kate today (and always, but today especially).   Thinking about Will's birthday coming up on Monday.  Always to correspond with the Perseid meteor showers.

KCWC -- Remade Flashback Tee and Fleece Pants

I tore the sleeves off flashback tee try #1 and sewed on the new cut-out-with-the-stretch-going-the-right-way sleeves.  Success!  At 11:30 at night I just could not face the idea of ripping out any part of this tee again so I bailed on sewing on cuffs  and just turned the sleeves under, and I left the bottom edge raw of the shirt raw.  Maybe I'll stay-stitch it sometime in the future.  The sleeve edges got a little stretched out and, as it turns out, the sleeves are a little short on him, but so it goes.  Done.  I'll cut out another this week and try to sew it next week to keep some kind of momentum going (or at least maybe solidify the many lessons I learned about sewing knits while tearing out and re-sewing this tee at least three times).

Liam thinks his new shirt is great so -- all good.

The fleece pants are another KCWC cheat.  They have been 90% done for at least 5 months now, sitting on Liam's dresser waiting to be hemmed.  They're made from one of Will's old fleece shirts.  Here's a picture of him wearing it when he was still rowing.

The top of the pants are cut from the body of the shirt and the bottom of the legs are the arms.  It took a little fussing to get it to all line up and to get the pocket right, but here they are and Liam loves them.  I hand traced this pattern using the instructions here.  Pretty good except, even through the instructions are great and seem foolproof, I never somehow get the pants quite high enough in the back.  I ordered the Oliver and S after school pant pattern and I'm hoping it will work out because pants are one of the easiest and most needed things to sew for boys. 

Okay -- that's it for KCWC for me, I think.   My friend never sent me her daughter's measurements for the quick A-line skirts.  I'm thinking of making one for myself.  In cleaning up the sewing/office/guest/junk room last night I unearthed the fabric I bought to make Liam a play cape.  If I get super-inspired I may bust that out tonight.  In the meantime though I just look at all the flickr pictures and think how much better everyone's sewing is than mine!  It's all really something. 

I was planning to post about Kids Clothes Week Challenge today

I am still bound and determined to sew next week.  But a combination of crushing deadlines and various crises at work means that I haven't purchased the jersey I planned to yet. . .and I haven't washed and ironed the fabric I already have yet either.  I have bookmarked the patters and tutorials I want to use.  So, in hopes this will make me accountable to really getting it done, my goals are: (1) sew Liam a tee shirt, which will be my first jersey sewing adventure; (2) achieve a good hand-traced pant pattern for him, all the ones I've made so far are too low in the back; and (3) sew a simple A-line skirt for the daughter of a friend.

We'll see.

I had hoped to make some sewing progress yesterday but. . .Liam woke up sick and, of course, I still had to work.  Thank goodness for GG who took a sick Liam for a few hours yesterday morning so I could work some more (and still more to do).  And, thank you for a pediatricians office you can always ready directly.  One phone call, a painless transfer, and it's the doctor himself who knows my child and was willing to listen carefully while I described his 102 degree fever and complaints about neck pain, and who asked good questions, and gave a reassuring but cautious answer.  (He said: watch carefully; if he gets worse, call back; give Tylenol -- I know, usually we say wait it out because Tylenol is not risk free -- but this time give him some and see if he feels better.  There is flu type-something-or-other going around if he gets a stuffy nose, it's more than likely flu.  If he worsens don't hesitate to call to call again; if he worsens quickly follow your heart and take him to the ER if you think you should.)  Liam felt much better with the Tylenol on board.  He had a very high fever last night but he was mostly sleeping through it so I let it break naturally (I pay attention to the studies on Tylenol and asthma; we limit Tylenol use.  And anyway, a fever is the body's way of fighting the infection, blah, blah, blah.)  He woke up feeling "Much better!" this morning and is inhaling breakfast even as I type.  So, maybe some sewing progress will be made today.  Of course, there's still work to do too.

This is not the first time that Liam has complained about neck pain with fever; it is at least the third.  Whenever it happens I have some kind of panic reaction and can barely think or see straight.  It is NOT FUN.  I remember this with Will.  He always had back of the head/neck pain with fever, and whenever we went to the ER (Stupidest way for a person with chronic health issues to get admitted to the hospital ever, especially a teaching hospital but don't get me started. . ..) the resident on ER rotation would get super excited about a lumbar punch and we would have to say (repeatedly) "No.  No thank you.  It is lung disease.  He doesn't have meningitis."   Sigh.

Climbing trees and making nests

Liam is up in the rhododendron tree every chance he gets these days.  Just like always.  I'm glad that Will and I worked out some tree climbing rules early and I've managed to stick with them.  When we first got this house that tree was all over and on top of the front porch.  I think Will spent three weeks every day working on it, carefully, carefully pruning out old wood, watching the shape emerge, bringing it back. 

It is at least 70 years old, that tree.  In the earliest photo of our 110 year old house that I've tracked down so far, it is a little shrub by the porch.  You see these same rhododendron trees a few places in the neighborhood, and in the city park at the top of the hill.  It's neat to think of them all being planted about the same time 70 odd years ago. 

Liam likes to pull off the little sucker branches and toss them to the ground (He was very excited to learn this used to be his father's job, and he takes performing it very seriously.)  He also is building little nests, in hopes birds will move in.  Thursday night I climbed up the tree to take a picture of one of the nests and he could not believe that a mommy could climb a tree. Funny.

In a month or two it will bloom and be full, full of light purple flowers and buzzing bees.

Besides Easter, we're determined to get some more peas in the ground this weekend.  And I need to finish some sewing that must be wrapped up by Monday, and hopefully visit the farmers market, just opened for the season.

Boat naming outtakes

At the boat naming Liam was excited to "help" wash the boat and play all around it.  In some of these pictures he looks exactly like Will to me.

 

 

 

Boat Naming

This weekend we went down to the boathouse to be present when one of the boats was renamed in memory of Will.  It was lovely, but terribly sad for me.  Will and I met rowing and he spent (at least as I knew him) many/most of his happiest and most productive hours coaching for the club.

My parents had won the rights to name this boat by means of a (large, very generous) donation to the club at a fundraising auction that I used to organize every year.  They had planned to name it for Will then (he was in chemotherapy at the time and had just shaved his head, I remember it as if it were yesterday), but Will declined since, in his words "I'm not dead yet."  So, now it's done.

I miss rowing, but it's hard to see how I can go back to it any time soon.  Already Liam is too much in various forms of child care because of my work. For a few more years I'll be happy with the occasional row and more regular workouts on the indoor rowing machine.

That's the news from here.

I'm traveling for work these next few days (Man, the air east of the mountains is cold and dry!) but have some catch-up  posts from December and holiday events coming later in the week, I think.

Remembering

Conscientious Objector

I shall die, but
that is all that I shall do for Death.
I hear him leading his horse out of the stall;
I hear the clatter on the barn-floor.
He is in haste; he has business in Cuba,
business in the Balkans, many calls to make this morning.
But I will not hold the bridle
while he clinches the girth.
And he may mount by himself:
I will not give him a leg up.

Though he flick my shoulders with his whip,
I will not tell him which way the fox ran.
With his hoof on my breast, I will not tell him where
the black boy hides in the swamp.
I shall die, but that is all that I shall do for Death;
I am not on his pay-roll.

I will not tell him the whereabout of my friends
nor of my enemies either.
Though he promise me much,
I will not map him the route to any man's door.
Am I a spy in the land of the living,
that I should deliver men to Death?
Brother, the password and the plans of our city
are safe with me; never through me Shall you be overcome. 

Do students still learn this Millay poem in school?  

It has been ringing in my head lately, a poem that Will always reminded me of, in a way; his refusal to aid or acquiesce in any way to his fate or to even buy in to the idea that what would come might come soon.  He was always steady as he went, always thought the next day or so would bring a new plateau, some new kind of stability, stabilizing treatment, a new routine, and we'd go from there, make that world as big as possible.  Steady.

Although not in the intended meaning, to me this poem always has a little bit of a "live every day for the living" flavor to it.  The idea that you could be a spy in the land of the living by serving death in any way, including by not living your own life.  And there is a little bit of the cheating death altogether idea to it, too, for me.  At any rate, I can't explain exactly how Will reminded me of it, and perhaps it makes no good sense to anyone except me, since those meanings are certainly not born out by the poem's context.  But it's a useful poem, I think, all-the-same, and topical these days, and I've been thinking of it, so here it is.  Never through me shall you be overcome. 

We miss him deeply today.  One year on, and forward into the next because, after all, what else is there but forward.

Advances in CF drug therapy

Hello Universe -- I respectfully ask that you give a little power and attention to this; Gods and Goddesses please guide and inspire the scientists and researchers, help these medications to work -- really work -- and get them to the people who need them quickly and at a cost normal working humans can afford.

First drug ever, as far as I know, to treat the underlying salt transport problem that causes CF to be so deadly goes to the FDA with a request for accelerated review and approval this week.  Thank you God for letting it get this far.  It's a start, it's a start, it's a start.

Liam tells me a story

After dinner Liam asked if he could play "lost kitten."  When I had asked him earlier today what he had played at school he told me "lost kitten" so I had been wondering about the game.  "Sure," I said.  Here's how it went.

Liam crawls around on the couch mewing; and speaking "Mommy...looooook....loooook...a little lost kitten, it's a lost kitten."  More mewing and the kitten crawls into my lap so I can pet it and Liam tells me it's story.  

Mommy, this kitten, this kitten, see, its owner has died.  He died.  The owner had a big, big sickness and after a while the sickness got so big that his body totally stopped working and he died.  But while he still had a big, big sickness, but before he died, he let the kitten outside and the kitten got lost.  And when the kitten came back he looked for the owner all around the world and he looked everywhere in the whole universe, and he came home and looked everywhere and everywhere all around the house, and all around the yard, and all around everywhere, again and again, but no owner.  So the kitten sat down and said 'hmmm' and 'think, think, think' and on the last think the kitten said, 'oh, I know, I think my da . . .my owner. . .has died.'  And now, Mommy, this kitten has come to live with you.  What do you think?

Then Liam said "Mommy, I'm really talking about Daddy, you know.  Even though it was a long, long time ago I still remember snuggling with Daddy on his hospital bed, when his hospital bed was right there, next to the tv cabinet, where the blue chair is.  I remember that."

Yes, small one, I remember that too.  Your Daddy loved to snuggle with you and talk with you and read you stories more than anything, and we can always remember exactly what that was like.

43

There are still some things in the closet that I haven't worn since Will died;I brought one out yesterday.  This keeping track, I guess, is one of my ways of remembering.  The day (finally) I changed the sheets on Will's bed.  The day I (finally) washed the last tee-shirt that smelled exactly like he used to smell.  The last time we cooked outside, ate ravioli, picked blueberries, ran through the sprinkler, drove this way in the car, I'll think, Will was alive.

The driving ambushes me the worst; there have been times, usually on longer drives when I'm by myself, that I'll just stop the car and pull to the side of the road and tear and stare and concentrate on breathing and wonder: how did I do all that; how can we go on.  Watch the sky.

It is his birthday this weekend.  He would have been 43.  Same as me in December.    

Artist, Artist, M'Bay Bay Artist

Liam has been looking at the atlas lately (after seeing a  Wonder Pets episode about Tibet) and is influenced by both the ideas and the visuals.  He explained to me that all these colors were places and what the places were called as he painted them, and I wrote a few down in order of appearance.

1.  Yellow = Olympia (home)
2.  Purple = Artist M'Bay (I have no idea)
3.  Blue = Artist, Artist M'Bay, Bay Artist
4.  Red = Olympia, Olympia, Wash, Wash, State
5.  Brown = Artist, Artist M'Bay, Bay Artist Washington DC, Wash
6.  White = Wash, Wash, Flower, State, State, Flower
7.  Orange = California
8.  Light blue = Artist, Artist M'Bay, Bay, Flower, Rain

I didn't write down the green or the pink.  He covers the entire paper.  He carefully puts each color down all by itself one at a time and he doesn't confuse the names.

A hard night tonight.  Liam is not good at falling to sleep, especially if he's had a nap.  He started a third day at school (daycare) this week, for a lot of reasons, and I know it will be good; but, at school he naps.  He won't nap for love or money at home, but at school, if I don't beg and beg and remind them every morning they will let him sleep for two hours.  And then he lies in bed and wiggles and squirms and complains and whines about not wanting to go to sleep for at least 90 minutes while I lie their and try to think peaceful thoughts and not about all the things I still have to do downstairs before I can go to sleep. 

So, now it's 10:02, I've been downstairs from epic bedtime for about 15 minutes, and it turns out these are going to be the only 15-30 minutes I get to myself today, because I had a long day at work and a long stressful drive home in hail and rain, and I can't stay awake myself much longer.  Another long day looms tomorrow, complete with another nap-induced bad bedtime to cap it off.  I know I have to come up with a better way, but so far, nothing I've tried has worked and I'm out of ideas for now.

Liam has been in mood to ask me lots of questions about Will's death again lately.  This is good, we were worried he wasn't talking about it; wouldn't talk about it.  Still, 9:15 at night mid-way through Long Bedtime is not when I want to field questions like "But, Mommy -- did the doctors hurt Daddy?" and "But, why, why, why did Daddy have the big sickness."  I would rather be on vacation in Artist, Artist M'Bay Bay Artist, wherever the hell that is.  I hope it's near the ocean.

Tiny sliver of a moon tonight when I let the dog out for the last time.  Tiny, far, bright, bright moon and breath that steamed the air.  I thought those days were done for the year -- but tonight, cold, cold again and almost clear.  Thinking warm thought about the fava beans, just four leaves each.  Stay with us small plants.

Solstice

 

Our small solstice fire.  On the solstice we eat dinner by candle light and (starting this year) have a small fire in which we burn our hopes and wishes for the upcoming year.  Liam wished for "fish." (I have no idea where this came from.)  And then he didn't want to burn his wish. 

"Mommy, if it goes into the fire and up in the air, will it come back?"
"Well, not exactly.  We believe that if you burn your wish on the winter solstice it puts it out into the world in a very special way, so everything, everywhere will know your wish and be able to help you with it."
"I don't want to."

Okay.  So, maybe not quite the thing for a three and a half year old, especially one with his second cold in three weeks.  We taped his wish to the refrigerator.  Fish.

My sister is here.  We are trying to enjoy Christmas.  Trying to be very gentle with ourselves.  I am not sending Christmas cards.  Not yet ready to sort through the last photos and movies on the camera, or any of the other things that eventually must be done.  Not writing the thank you notes I should write, yet. Still ambushed by sadness daily -- an ad for a movie I know Will would like to see, he loved movies, a scrap of paper with a doctor's phone number, the sky in early morning, a long drive, something I know he would think was funny, something I want to ask him..

Someone wrote me and said: "we'll be thinking of you and your son as you make your lives together in this new way."  That's really what it is, it's a process of finding ourselves, our new selves, together and separately.

Will made the bowl we're using as a fire pit.  Years ago, before I knew him, he did a lot of metal work and sculpture and we're very glad to have a lot of the results -- the fire bowl included.   And we really miss Will.

(Auntie Chris lit the fire by flashlight.  A thoroughly modern solstice.)

 

A few things

This is the picture we used on Will's memorial card; he painted it years ago and it had been put away, but I found it when trying to go through all the art supplies and preserve what we can for Liam.  It seemed perfect for the card.  On the back we put one of my favorite blessings.

May the blessing of the rain be on you—
the soft sweet rain.
May it fall upon your spirit
so that all the little flowers may

spring up,
and shed their sweetness on the air.
May the blessing of the great rains

be on you,
may they beat upon your spirit
and wash it fair and clean,
and leave there many a shining pool
where the blue of heaven shines,
and sometimes a star.

Fitting since it has rained going on four inches or so around here since Friday.

This is the link to Will's obituary.  The service was well attended and lovely, so that was a relief.  My sister when home to California for a week today; she'll be back for two weeks at Christmas and then we're well and truly on our own for a while.

The family dinner after the service went okay, I hope.  No yelling or crying, so I guess that's good.  We have lots of leftover food.

The dog is taking it very hard.  She went to dog daycare and then my parents' on Friday.  Yesterday she came home lethargic and sick to her stomach.  Finally around 5:00 I took her to the emergency vet.  Pancreatitis*, they said, probably caused by stress and grief.  Rest, IV fluids, and various medications to treat pain and nausea are needed.  Fifteen hundred dollars later (late tonight or maybe tomorrow morning) she can come home to rest here.  Pray it doesn't become recurrent.  Poor dog.  I hope it doesn't make me a completely horrible person that I find it sad, worrisome, and annoying in equal measures.

*Mildly ironic because people with CF often get this, although Will never did, at least not officially.

New bed

 

This was Will's hospital bed at home.  There's no easy way to think it and no good way to communicate it but to be out with it: Will died at home on November 27 at about 1:22 in the morning.  I know the time because I had been there with him for the past 48 hours or so and I had my head on his shoulder and my hand over his heart when it fluttered and stopped, fluttered and stopped, and then just stopped.  We had been giving him medication every hour through his IV port trying to ease his suffering. It had been a long two and a half days.

I woke Will's sister.  Called my sister downstairs.  She trained as an EMT (in addition to her zillion other useful skills) and confirmed what I already knew.  We called Will's parents. They came over (I think they had left only hours before).  We called the funeral people.  They came over.  Turns out they are neighbors (about 4 houses down) and thought this would be a good time to let me know how  they had tried to buy this house too, but we had got it right out from under them.  I said, "Oh, umm, sorry?  I'm sure your house is lovely too."  They went away and took Will with them.  And now he's just gone.

What happened you might ask.  Well, nothing really and, of course, everything.  Will was in the hospital in mid-October.  His decline in lung function was continuing and he was not recovering.  He was increasingly short-of-breath all the time.  Going up the stairs became something to be carefully planned and limited to once a day, if at all.  Will didn't want to die in the hospital.  At the end of October his doctor of going-on twenty years recommended hospice care. We tried that, but they kicked us out when the medications Will needed for palliative care proved too expensive, or something.  That part is still a little mysterious to me. 

Will went back to the hospital in mid-November.  Through the grace of God and big, big efforts on the part of Will's hospital doctor (pray you are tended by this woman or her twin if you ever get sick, really sick) and his regular doctor, we got him home with put-together palliative care and all the oxygen they can put in a house on November 22.   He had really good days on Tuesday and Wednesday.  Wednesday my sister arrived.  Will sat a the table and ate dinner, played with Liam and Chris.  Planned for Thanksgiving.  On Thursday morning he started out okay, but then almost immediately called me from the kitchen to "help."  More oxygen, he said.  We turned up all the oxygen we had.  Gave the medications we knew to give.  A nurse came over.  We were all still planning at this point -- how to make this set up work as best as possible, what would Will want from the nurse over time, that type of stuff.  We thought it was just a bad morning.  But by mid-day he was getting worse, not better.  By late afternoon we had paged the hospital doctor and got new instructions, been told this was probably the beginning of the end.  Sent Liam to my parents.  Waived off Thanksgiving dinner, half cooked.

By Friday morning he had pretty much stopped talking.  By Friday afternoon he couldn't swallow at all.   More new instructions.  We gave medication through the IV port. 

I don't know what else to write.  I wish it were different.  We're planning a memorial service for Friday.  People have been amazingly kind.  Liam is steady -- happy and sad.  The worst is when he says: Mommy! We used to play [whatever] when Daddy was still alive.  No, the worst is when he asks: Mommy? Will Daddy be back in the spring?  No, the worst is when he asks:  Mommy? Does Daddy still have the big, big sickness even though he died?  No, the worst is yet to come.  His worst days are long in the future.  So we bend towards it, trying to think of what we can do now to make those days easier, more understandable for him.

I'm not sure what I'll do with this space.  There is much going on.  Much remembering of Will.  Much growing from three towards four.  We probably will be back here in some form, someday.  In the meantime, I thank anyone reading for helping me to have a space to remember what I want to remember, in the moment but also held apart.  Thank you.

Tigers and bears

Liam requested a tiger costume for Halloween.   He's been pretty interested in tigers this year and has seen baby tigers at the zoo.  About a month ago (I need lots of time for these things.) we went to the fabric store and he choose the fleece.  Please don't tell him it is leopard.   He has declared it tiger.   I had a pattern that was a sort of footed pajama approach. . .you know, I bet you had something like that your mother made you for Halloween, I know we did.  Well, footed pajamas went by the way in favor of pants form a home traced pattern, made a month ago and worn weekly since, and a tiger "coat" which is the top of the pj pattern cut long and finished.  I don't know why the ears look so rabbit-y.  They are the tiger ears from the pattern, maybe I was supposed to gather the base or something.  I may fuss with the ears a little tomorrow.  It still needs the zipper and the hem, but that's it: basically done a whole week early.  Thank God.  Fleece fake fur is horrible to sew. 

Like most things I have time to make these days, it's pretty cobbled together.  The hood did not work exactly right and was big enough for me to wear (Cute too!) before I attached it to the jacket.  I'm going to have to take in the center seam with safety pins or something because it falls into his eyes, which he doesn't like.  There is no way I am ripping a seam on a fleece fur Halloween hood.  It is not going to happen, life it too short.  Other than the hood in the eyes thing, he thinks it's great.  I think the pants and jacket approach is going to be versatile. . .this way in a week when he wants to wear his tiger costume to school next week I can say "Yes!" and he won't be stuck in pjs all day. 

Will is sick; his is having an infectious flare up; and his pulmonary failure, and probably lung rejection, is progressing.  He was in the hospital a few weeks ago, home now on iv abx and inhaled abx and even though he's almost two weeks into treatment he started running a fever again yesterday.  His lung function is way down -- he's short of breath with any activity (i.e., sitting or standing up makes him out of breath), and sometimes at rest.   He's keeping it together but tired of being sick.

Creepy Crawly

Will's family has a tradition of the "creepy crawly" which is a very nice animal unless you make it mad. 

Digging

Warm rain today; sometimes lots accompanied by wind. Then bright sun. Tonight we had that funny filtered greenish light, where the sun is bright but there are lots of dark, dark clouds just waiting to get in its way.

After dinner Liam insisted that he had to go outside. Usually he wants to run around or throw the ball for Mollie. Today he wanted to plant in the garden. Digging and planting. (Mollie wanted to be inside -- she's a smart dog, it was at best 50 degrees and threatening.)

Will has been having some good days -- feeling better, had a very positive check-up on Monday. Now it is just continue this course of iv antibiotics and hope that when he stops them in mid-May the blood infection (if there ever really was one) doesn't come back. And that the dosing for his blood thinning medications can be worked out so his level isn't bouncing around quite so much. And the clots go away. At any rate -- it's a much improved picture from a few weeks ago for which we are so very grateful.

The apple tree in early spring

We're all still here. It's been a rough few weeks. Will has been very sick, although seems to be stabilizing and getting stronger now. He's a lot better than he was 2 weeks ago: the swelling in his neck is down; his pain is much decreased; and most of all he's home from the hospital, discharged Saturday. I have been traveling for work, trips long planned and not cancel-able. DC most of last week. East of the mountains tomorrow. Will's mother has been sick and unexpected confined to bedrest for most of the past 10 days. My mother came up from California to help with Liam and everything else. Everyone is tired from the fear and worry, and all the running around and trying to coordinate schedules, medications, Liam, work, the dog.

It's great to have Will home. He came home on two iv antibiotic, plus all his regular medications, plus blood thinners. He's down to one iv antibiotic but a daily dose of saline has been added to try to keep his hydration stable (he's not been feeling like eating or drinking much, although that is starting to get better), tomorrow he starts the inhaled antibiotic again. Thursday home health comes for a blood draw. Monday back to the hospital for clinic. Blah, blah.

I haven't felt like writing or taking pictures or doing any of this stuff, but it all does go on. Liam and I were outside throwing the ball for Mollie after dinner and Liam decided to be Mollie and roll in the grass. I occurred to me that this time next year he might not want to roll in the grass under the apple tree in quite this way, in early spring, when the apple flowers are just out and the birds are making nests. And I want to remember that part too.