Monday, August 31, 2009


Something there is about motherhood that has brought out my inner carnivore and I think I know why some mothers eat their young--the temptation to at least LICK is so great!

I fell in love with cjanerun (now cjane enjoy it) when she talked about the same, only better because her writing is F-I-N-E-fine.

Today, the candy analogies of strangers. Read it.

I always want the toes.

*poor baby woke up sad this morning, so we're off to Philly, just bumping our scheduled Thursday visit to today instead. I'm hoping it's just that loose drain tube and he'll feel better soon. No path results back (I've already been on the phone this morning!).

Sunday, August 30, 2009

hospital crafts

I love the "can do!" and the "make do" spirit of crafting but have lately given into the allure of perfect supplies and beautiful materials. I cannot say I fully regret that. I do love me some beautiful materials. But I have many frugal bones in my still-sorta-bony body and am a child of a child of a child of The Depression and, as such, love a good challenge.

After surgery, an orthopedic resident brought by a big brown sling with a stiff & scratchy strap. "Hmmm," he said, in a surprisingly disappointed tone, "I don't think this will fit him." Sometimes I wonder if I really am at a children's hospital. Some of the residents seem rather surprised at this, too (the same dumb ones who march in with jolly voices at 6:23 am and ask, "Oh, did I wake you?"). Daddy cut up a flannel blanket and made a handy scouter sling. This is how Reuben felt about it*:Mama had a bit of fabric and also found nice soft tubular gauze and took impossibly and inappropriately tiny stitches with silk thread because she needed a work of love just then. For her Reuben*:*photos may have been selectively chosen with great bias
(which is not really fair because I was very proud of his can-do crafting spirit and it worked fine but I wanted to make one and then I'm the one who dresses him)

Project #2:Audrey has a great love of all things starred. She also has a great love of long-legged dark jeans, and we both thought her back-to-school pair was a bit plain. I brought them to the hospital this week and, though I was a bit unprepared, was able to make do:

A quick image search on the hospital room's computer + paper towels + medical tape = perfect star embroidery templates! A double set, even, since the towel was 2-ply :). I just pinned them straight on the jean leg (I let Audrey do the arranging) and stitched around the templates (in lieu of a good photo, I amped up the effects. clever, clever me: such a good trick!).

When I got home, I added details with silver thread, tracing inside one of the stars and adding a tiny pocket detail.They're so awesome, they made the first-day-of-school outfit cut.

back to school

Like a good chunk of the mommy blogosphere, I got hooked on nienie dialogues (and cjanerun) last summer. Nienie documented very lovely, feminine mommy wonderful things like back to school feasts and yearly silhouettes of her children and then she fought for her life for a year and the world rallied around her and now she still reaches for loveliness. See here what she did this year. And another year. She's a girl who definitely does fancy.

I don't. The domestic arts are suffering around these parts.

But I love my so-big goates girls and even though I am out of sugar and butter and flour and milk and nearly eggs, even (I'm not exaggerating; I have a difficult relationship with food lately), I did have tater tots in the freezer and it was time for celebrating.
So we feasted on those. Plus some bonus chicken fingers and fresh cukes and tomatoes and thyme from our garden. Oh, yeah, and bonus dippers. One is even a recipe dipper because I am fancy that way.
My crowns were quickies and the poems obviously on-the-fly. And the photo is bad because our fancy "table" was the old red rug in our multi-purposed basement because we watched HP2 while we ate because that is what they were doing when I thought of it all and the light isn't so hot down there (and the models were oh-so-reluctant).

But afterwards we, too, took the time for father's blessings for the start of a new school year. Audrey sat very solemnly for hers, and Marian fidgeted and played with her bracelet, and was peeking at me when I peeked at her. Their daddy, he loves them so. Me, too.

Life's great moments are not always willing to be staged.


I keep putting this off, thinking I'm just about to post more, but wanted to let our so kind and very lovely well-wishers and hard pray-ers know that Reuben was released on Thursday for good behavior and we are home and he is as cheery as can be. And rather naughty, so wiggly and wilde and trying to chew through his drainage tubes! I think he is already feeling so good that that dumb cancer is GONE (all of it!, shouts my heart of hope).

In a couple of days the pathology results will be back and that will be the cue for the sigh of relief or of pain.

In the meantime, life is good.
And school starts tomorrow!

Wednesday, August 26, 2009

Yesterday's post was abbreviated by our call to reunite with our where's-my-mama?! little man, just coming out of anesthesia. He was very sober yesterday, though he spared a grin or two for his sisters when they came to visit. Today, he is again a lover of the world and everyone in it and has dee-lighted me with his joy.

Reuben hasn't had any complications and frankly seems more comfortable than he was before surgery (doubtless the narcotics are helping with this), as his tumor was a bit damaged and tender enough that he would flinch whenever I touched it. I'm happy to report that before I came to the computer this afternoon, I transferred that sleeping sweetheart from my lap to his crib without having to worry about entanglements with the IV pole; Reuben is now monitor and IV-free. He just has a couple of drainage tubes coming out of his chest, attached to a bag that exerts a gentle suction to pull out blood and fluids that we don't want pooling and inviting infection. Because there is empty space there, now, where the tumor used to be, where surrounding muscle and a few nerves and the tip of his right scapula used to be. It will be awhile before we know the cosmetic details, but I'll admit it's a bit sobering to see that those dressings just aren't as puffy as I had expected, because that underarm flesh is not as full as I am accustomed to seeing it.

It's not the scar that worries me. I would have troubles, I know, with facial disfigurement (our identities are so strongly linked that way, and I am fascinated by--and so admire--those who bravely face that journey like nienie), but I think scars are badges of courage. Our family has a great example of this from my 8-year-old nephew Drake, who was badly burnt when he was two, pulled through the very long (continuing) healing with honor, and now says his scars are his favorite thing about himself. I think our present's social tolerance will keep him from any trouble that way; our differences aren't as hidden as they were in the stupid 50s ("How can you hate an entire decade?" a friend asked me. Oh, I can. Can and will and do... so conformist and ostracizing and nasty...which I know is a ginormous generalization on my part, but I just get so tired of 50s deification in certain quarters that I overreact).

What worries me is facing the reality. We've lived in the land of maybe-this-and-hopefully-that-and-don't-really-think-about-the-other-or-you'll-implode-because-that-hole-in-your-heart-will-get-so-big, and now we are constructing the now. Now Reuben has an arm that he will never be able to lift high in the air because he no longer has the muscle that will pull it there. Now Reuben has a scapula that will not grow. And, happily, now he has a beautiful little hand with no discernable nerve damage. Now he has an elbow that works and a fat little forearm that is way too small for the available slings (hospital crafts have begun!) and a tumor-in-a-freezer instead of a tumor-in-a-shoulder. Fingers crossed and arms folded in prayer and heads lifted and thoughts directed to the hope that that tumor has lovely healthy margins. Then the now that is cancer can be over.

Awaking. Now he wants to play. Or eat. Most certainly, he wants the mama.

Tuesday, August 25, 2009

it's out

Surgery this morning was shorter and less complicated than the surgeon anticipated.

Of course, it's only after the fact that we hear/realize the lack of optimism.
In-surgery pathology looked good (samples taken at questionable margins), but complete pathology won't be done for another week. The tumor was pseudo ecapsulated...

just got called...I'm off!

he got through it!

Saturday, August 22, 2009

pure of heart

Last Saturday was a glorious-for-Mama sort of day: my Marian Grace was baptized.

In our religious tradition, eight years old is designated as the "age of accountability", and children may choose then to be baptized. Both my mom and Nathan's parents were able to fly east for the event, bringing new scriptures and pretty white remembrance bracelets and a white handsewn dress to be baptized in (sometimes I get to thinking I'm a better seamstress than my mom and then I am HUMBLED).

Lots of her best local supporters came, some with hand-picked bouquets. Maryland superstars snuck in as well, to her delight. This is just the sort of event that has me glowing with love for my family and my friends and my husband (he baptized Marian and conducted the meeting and I always love seeing him teaching in whatever venue. I guess it's the professor in his soul I fell in love with in the first place--ah, the philosophy in those early 17-year-old letters!).

Three of her sweet church friends were baptized at the same service (my programs all lined up while the paint dried) and I loved seeing both their glow and the good folks who were there to support them.

We had root beer floats (a family tradition: Nathan's parents served root beer floats at our wedding open house in their backyard a dozen years ago) and cookies afterwards. She ordered "white hearts!", which I thought was very baptism-appropriate. Marian had such a hard time sleeping the night before (oh, the excitement!) that I finally invited her downstairs at midnight to help my mom & I decorate the cookies (that smiley face on the right is one of her contributions).Every event of Marian's is especially sweet to us. We know how close we were (several times) to missing our delightful journey together. This summer's craziness interfered with my fancy plans to prepare her spiritually for the event, but we were able to have some good family conversations and I had sweet evidence of her readiness:

I've recently started leading the mid-week activities for the 8-11 year old girls in our congregation. I gave Marian her little goal booklet at the first activity, and asked her to write her name on the cover. She wrote:

Marian Goates
IU, God.

I love you, my Marian Grace.


baby and me, Caledonia state park outing last week.
photo by Marian

Last week's MRI showed a smaller, deader (necrotizing & hemorrhaging) tumor & our surgeon was very optimistic about preserving the function of his arm. Probably. It looks from the MRI like the tumor abuts (but doesn't surround/embed) the brachioplexus, the arm's big nerve center. Ay. He also described for us (Reuben & I) where the very long incision will go (across his right clavicle, into the armpit, zigzag up here, then down there, then go around to the back to catch the biopsy incision, which probably pulled up some cancerous cells so has to be removed...). Half the time we're really excited for this to be DONE--get that cancer! and half the time we're just sick and cold to our cores about it.

Reuben's surgery was moved to Tuesday, and we'll be leaving mid-day Monday for Philly because we need to get there in time for R to get his blood drawn for a transfusion cross-match. Just in case...or is that for sure? How much blood loss will there be? I keep trying to imagine his surgery, then stop myself, because why do I want to see that? I was really preoccupied by the blood that must be involved, but the surgeon reminded me they cauterize blood vessels to keep it a "clean, bloodless procedure." Ay, the pictures that flood my mind...

This was fascinating: the main way the pathologists can tell if the procedure yielded clean margins (ie, got it all) is to daub the whole removed mass with India ink, freeze it, and then examine the very thin slices. If a microscopic examination shows healthy cells between the malignant and black ink, we're good. If not...well, it continues. "We're good", by the way, still means "two to four more rounds of chemo." Okay, then, looking forward to 2010. "Twenty-ten! We begin again!" has a nice ring to it.

This was scary: the surgeon estimated we'd be in hospital for just 2 or 3 nights. No way I am going to be feeling comfortable about leaving at that point. But also I'm so excited that we might make it home to see the girls off to their first day of school. Including a middle-school girl catching the bus at 7:04 am.

This preoccupies me this week: what can I dress a bulky-wrapped, so-painful shoulder baby in? My mind immediately says: "Summer=nudie baby!" But I disagree with myself a bit because a layer of clothing will protect both dressing and mama's heart. I want to sew something, but am uncertain...I think a kimono-style top or three with extra-wide sleeves, especially since this book (see the cover photos) is currently mine from the library. The other obvious problem is when I will be doing this sewing.

"Do you think I really am Harry Potter?"

Marian asked me after staring at herself in the hall mirror for a rather long period of time. "What do you think?" "No...(reluctantly)." "I agree: no." "Well, then, why do we both have curly hair?" (Marian! How have you not noticed that he has spiky black hair that won't lie flat, just like his father's? Have you not read all of the books twice at least, like the other speaking members of your family?! Just because Daniel Radcliffe didn't grow up to look just like Harry...)
When she asked if Reuben should have a lightning scar, too (she was at a carnival party this morning), I said: "Yes, but hurry and go get a marker before I change my mind!"

Her practice flash was much neater, but she found that a squirmy baby is a difficult target.

too good not to share

*Our family always planted radishes. Not because anyone actually liked them, much, but we planted them because they were the first ready to harvest. I can picture one of our great old Corelle plates with hose-washed radishes and a pile of salt to dip them in.

In this, our family's inaugural garden, we skipped the radishes. But I saw a link to this precious tutorial today and so of course we will be planting them next year :).

*While waiting for our room to be ready at the Ronald McDonald house this week, I browsed a copy of a chasing fireflies catalog and oh-my-if-i-were-richie my daughters might wear those clothes exclusively. Since I'm not, I am very sewing-inspired for this fall. I showed the catalog to my husband, and he said this: "Oh, I don't know. Those are almost too cute; like they know they're cute. Totally the sort of clothes rich people dress their kids in." "I know!" I answered right back. "Because they're totally amazing, that's why" (me and Junie B.). Anyway, they have charming accessories and costumes, too. I've seen a couple of their items in the artists' shops before, but this is a very-well curated collection. Plus, photograph something in the woods and I'm a super sucker for it.

*Or, it appears, on the lawn because I cannot get my mind off of this:
She's mine. Well, my niece, anyway. Who was here just a couple of weeks ago... (choke back sob of loneliness for her...). Oh, yeah, she made that great headband with her auntie V.

Wednesday, August 19, 2009

they don't know about my troubles

Swimming lessons were great for Audrey this summer. After the first day, the instructor said she was "born to be a swimmer" and praised her good swimming lines and very potential and Audrey stood tall with those long lean legs and kicked strong with those long lean legs and her water confidence grew. It meant so much to her to be seen.

I tried to give Marian space on the first day of swimming lessons, to stay far enough away and show enough superficial disinterest that she wouldn't over dramatize and fear the experience. No big deal to either of us, right? But the weather was cloudy and the water was cold and a little too deep and, in the end, the instructor recommended "next year." When I consulted with Marian, though, she didn't list those as her primary reasons for wanting to towel off and stay out. "Oh, Mom," she whispered, shivering, wiping wet tears off a wet freckled cheek with wet fingers, "they don't know about my troubles!" My heart broke a little (again) for her, my resilient spirit who defines herself not only as a girl who loves sky blue and wants a pony and likes to dress fancy and has clever crafty hands, but by her "troubles": her familiarity with the hospital cafeteria's sweet and sour sauce and its nurses and its needles and a clear cognizance of the miracle of her survival and the work and the money and the so many different strategies and the final difficult transplant decision that saved (save) her precious life.

I've always thought of myself as a bit of a hider. I like my space and embrace the odd cat identity I often feel. I like the medical anonymity of staying at the Ronald McDonald House or walking through a children's hospital, where tubes and dressings and IV poles and medical drama are accepted without explanation. But I also find myself panicked, sometimes, on days like today at the hospital, that "they don't know about my troubles!" I find myself squeezing the story of my two tough kids into the most minor interactions, mastering the conversational art of finding every possible segue into who we are and why we're there and how I'm already an expert at navigating the series of waiting rooms and questionnaires and lists of medications and the weird waiting while my carefully comatose baby is prodded and imaged and sliced. I'm embarrassed, knowing I'm talking too much and too fast, but I cannot seem to stop it. Something in me wants to be known.*

And I think, writing this in the forced cheer of my little glassed-off cubbie in the MRI wing, waiting for my fierce little man to "imaged" (and now typing it in another, waiting for him to sleep off the Versed and phenobarbital and...), that you feel the same way, that wanting to be known is probably universal. The kindest card I've ever received had this simple message: "I see you." I want to let those stories spill out around me, to better extend the courtesy of seeing in my out-of-hospital interactions. When I know their troubles (or at least remember they must be there), the obtuse may be understandable, the annoyance explainable.

Troubles! Make yourself known!
Human understandings! Knit!

It's the craft of human kindness.

*and then there's the most obvious sign of this, the narcissistic act of blogging the fact.

Monday, August 17, 2009

galloping goats

Look at that family! We have been busy beavers. Galloping goats.

So much life and so many visitors, though a blessed thing, is not a boon to blogs.

So, here's a quickie:
R's surgery is scheduled for next week, 8/26. We head tomorrow to Philadelphia for pre-op visits & MRI & CT scan fun.

Craft room shelves, pottery, American girl doll bed, so many flowers, woods, Mongolian silk, two birthday parties, handmade grandma gifts, Marian's baptism...

Ah! So many posts from the last 2 weeks that hope to someday live!

Thursday, August 6, 2009

this one's for you, Paul*

We have ants and I am battling them valiantly (except when I don't, at which point they show their strength and I strengthen my resolve), but even I haven't seen this:

It almost makes me proud of them.
They're trying to take over the world.

*my brother is an ant scientist

Saturday, August 1, 2009


Living out a nightmare is an interesting business. Everyone is still sleeping except my crazy husband who is riding his bike (*edit: he rode for 5 hours, 70 miles on his mountain bike. Standard Saturday fare!), so I will ramblemuse for you:

We threw a little party for Audrey last night and so I spoke with some parents whom I hadn't seen since the end of school. They were, of course, sweetly concerned, and I was in the this-was-a-nice-party-and-I-love-these-children-and-Audrey-was-so-happy-and-my-baby-is-probably-neutropenic-right-now-and-I-hope-he-didn't-get-germified-and-I-can't-believe-though-really-I-can-because-I'm-that-way-how-very-hard-it-was-for-me-to-think-tonight-so-sad-and-confused-I-kept-finding-myself-I-might-be-doing-worse-than-I-thought place (you know that one). So I got the "how are you?" and "you are doing so well" and "I cannot imagine" kind looks and thought about those questions a bit from their perspective. I ache.

I'm working my way through the Friday Night Lights (break in writing to flip to the library website to request the next DVD) and one character vowed yesterday while I was watching and rocking my baby to sleep in the sling (my best trick right now): "serious as cancer." We're in the middle of a dance with a disease so universally feared it has become cliche. So deep in our dance that it is the familiar cadence of our lives, a continual presence that neither Nathan nor I can get our minds around, so we just enjoy a bit of dark humor and arrange our who-gets-which-kid-at-which-hospital-today schedules and occasionally hold each other and weep.

Because it is so darkdarkdark in the fearsome place, instead I mostly obsess about the details. Reuben lost all the eyelashes from the sweet sweep of his right eyelid this week (3 long and four medium lashes left on the left; I just sneaked in to his sleeping self to count them) and I am haunted by this development. I tell everyone I meet (nurses, doctors, friends: "How's Reuben?" "Pretty good; he liked his blood transfusion very much this week [blessed red cells! donate magic blood, please!] but he lost all of his eyelashes and I am sad.") and most don't really know what to do with that little prize of information. I think I am just trying to find something concrete that is happening. I adore that kid and still think his every curve and smile and sob is scrumptious and am not so shallow as to think his eyelashes are important in whatever shallow way you may be thinking of. But their slow disappearance visibly marks the progression of this battle, better than his growing medical file or the little 3-ring-binder whose organization may be a losing battle of a smaller sort (not that the cancer is a losing battle right now because it is not and I'm not saying that in a desperate hope sort of way. That sucker is shrinking). It takes all of my considerable cerebral power to calmly participate in the systematic poisoning of my baby's growing cells. To judge whether a 70% or a 60% dose is the right balance of sobbing nausea and food-strike mouth sores with shrinking and hardening of this synovial sarcoma (such cold words for those sinister thoughtless military cells buried in such soft and sweet and purposeful flesh). And these details mark for me, amid the usual baby life of diaper changes and trying the first July peach and admiring fat knees and tan little feet (they stick out during stroller rides), what is happening. The poisoned lines on his fingernails.And the progression fromtotoI want this cancer to be a life-stopping event, as in "All I do is hold my darling baby and soak up these seconds!" But what I've learned most of all is that life goes on. It does.

In this way: I think I'm finally past my pathological grief over my dad's death, 5 years ago. From stupid cancer. A post for another day.

But also in this way: I interrupted the writing of this post to deal with the waking of the household: the 7 year old sobbing because gift bags from last night's party were in front of her dresser drawer and she wanted to get dressed, to finally make good on my threats to take the 11 year old's door off the hinges if she slammed it one more time, to start yet another load of laundry because the visiting cousin (whose bags were lost by the airline) had nothing to wear and certain dresser drawers were empty... But life going on in this way is good, too, because you have to just get up and deal with it.

And that, my friends, is how I'm feeling today.

children of the corn

Yesterday was our last day with Sally's family and now my other sister is visiting (hooray!), so we thought a good afternoon in the woods was in order after swimming lessons. Except it rained. So we drove up the road to my favorite orchard (there are lots of others in the area, but I reward them with the distinct honor of my peach-buying because they have a good web presence) and ate peaches and watched the children play. The two littlest parked for a full 2 hours in a great little play box: two apple bins filled with feed corn and outfitted with sandbox toys. It was fantastic and all of us want one for our own yards. So clean compared to sand and satisfyingly pebbly and so unlikely to find another use by neighborhood cats. The eleven-year-olds wandered in the summer rain. The in-betweeners, well, wandered in-between. We did have to send an emergency adult emissary into the rain at one point to discourage playing in the port-a-potty ("but, Mom, we only played in the one that smelled like soap!" Ick.), but other than that, very little motherly interference was required. Plus we found a toad.We decidedly overstayed our welcome there, but we spent cash, too, and why would they have picnic tables and a nice corn bin if not to lure us to stay? we were so sad to leave each otherAlso, I am so sad I didn't get a picture of Amari after her peach lunch. Juicy deliciousness. She neatly stored all of the peels in a crack in the picnic benches. But gave the pits to Mommy.