lazing in the hammock with fellow slacking enthusiastic, Uncle P.
Though it's been a week of ups and downs, I knew Roo had pretty much crossed the threshhold of his recovery when he dropped on all fours, stuck his butt in the air and said, "Look, Mom, I'm a stunk! Smell me! Puuuuuu!" Also, the fact he paced around the living room one night chanting, "I'm fine! No butt medicine tonight! I'm fine!" was a clue, and the fact that today he's eaten half a peck of apples, three lunches and a popcorn ball leads me to believe he is now handling his throat pain well. For a parent there are certain signs.
After spending all of August imprisoned either by the hospital, Roo's rocky convalescence or my own interminable migraines, we have taken a few days to focus on doin' silly stuff and sometimes plain old nuttin'. With back to the grindstone of work coming for Mommy at the end of this week--and a return to school only 10 days away-- we have been splurging on slacking.
Among our Dog Days end-of-summer nonsense:
talkin' to Santa (Xmas is only 9 paychecks away!)
spendin' time in the green woodsy
spendin' time with critters
There is a nest/ way up in the trees,
and it's gently rocked/ by the evening breeze...
And the the two little birds/ in this cozy nest
snuggle down/ and take their rest...
These little birds are truly blessed...
I had a dream. It wasn't the same as Rev. Martin Luther King Jr.'s, but there were commonalities. And anyhow, we'll come back to that later...
After napping a short while today, Roo sat up with an enormous smile, hugged and kissed his big sleeping brother (a most uncommon event), laid a hand to his chest and said, "I'm all better!"
Stranger still, Roo went on to yawn cheerfully and say, "Mommy, I want to go back to school now! I want to sing songs and read books, play on the playground, eat breakfast and dinner and see Andrew* and Claire-E-Claire* and make stuff. Okay?" Then he tumbled out of bed, grabbed an armload of ImagiNext armored dinos, and ran into the living room with a shout, "Now I play!"
*[Andrew=Roo's best bud and Claire-E-Claire=his beloved teacher]
And Roo's been bubbling with good humor and healthy energy ever since. Even the dogs are looking at him oddly, as if to say, What happened to the slow-moving and grumpy little invalid human? Will he not be giving me all his food under the table anymore?
Well, maybe today Roo hit some sort of milestone in the medical course of a surgical invasion and his body is having a banner day. Maybe he had a happy dream about riding horses and running through fields, and he just wants to get back into the swing. Maybe God brought him peace and comfort, and the embrace of a hundred prayers, and his spirit was lifted. He's four, so who really knows.
But I'm not four, and here's what I do know...
I napped with at the same time as Roo and Toe, which I never ever am able to do. Even when I am up half the night or all night or night after night (and friends, this has been the recent situation), my body clock has never allowed me to sleep in the day, not even sick or medicated beyond the brain inactivity of a stone, not my whole life--even as a child.
And here is what I dreamed:
I was in a sort of heaven, and it was just a neighborhood on earth. Hub and I were outside our house, a humble farmy house on a corner, shoveling and shoveling snow, beautiful fluttering snow as it came down in gentle flakes. I was tireless and singing, my feet gave me unearthly twirl and bounce--like an astronaut in zero gravity, and Hub laughed at me because I couldn't stop bouncing. Our neighbors were out shoveling and laughing too: gentle-souled Ben and Sarah from our church, the young couple who lead the worship music and teach the youth groups. Sarah was singing with her baby on her back, and we sang and twirled and had the best time.
Next I was at a school full of children, but it was outside and everything was warm and suny and green. I was running and running, downhill (and more of the bouncing and laughing), and Hub and Toe and Roo were running and playing. I saw Miss Claire-E-Claire, Roo's preschool teacher playing too, and I said, "Wait! Boys! No running in school!" But Miss Claire said, "Oh, it's okay--everybody runs here, everybody just runs as much as they want!" And I thought to myself, "God, I've missed running--running and bouncing and singing feels so good! I could do this all day!"
And then I woke up, and a knowledge inside me, a rare inaudible voice I recognize as my God, told me, "Remember this dream. Remember the joy, because it is my future for you."
And maybe Roo had the same dream, and now we both feel the promise of a bounce in our step.
Call me crazy. Call me blessed. I don't care.
Roo in the zenlike haze of post-op 'poppy candy' (aka: morphine)
I was just reading an article about inventions that killed their own inventors. If we searched history, I bet there should probably be some mommies on that list, too, if you play it a little loose with the term "invention" to include children and "kill" to be a euphemism for, well, "almost kill."
It's been a rough road, beloveds.
The important thing, Roo is home from surgery. We were stuck in the (embarassingly swanky) confines of Amplatz Children's Hospital for 5 days as he struggled with excessive pain, botched IVs, mouth sores from the vent (they think), refusal to drink eat or talk, and generally poor progress in recovery.
There were night after night of all-nighters, switch-hitting between me and Hub on who got to care for which basketcase child (Toe was a liitle traumatized by the whole experience of his bro howling in pain for days on end--this was evidenced by the fact that on day 3 he asked me to "tape my head on with sticky tape and glue because I feel like it's going to fall off"), who got to sleep or eat or bathe or open a piece of mail or watch the news or pee. Yes, we fought over who would get to pee. That is parenthood, my friends. Read it and weep.
While we were in stir, we had so much love and support. The nurses and doctors (well, not you, Nurse Firebreath--you know who you are!)
were angelic and exceptional at their jobs. Tante Katy and Linda cared for Toe on and off, pampered Roo, and kept us supplied in highly caffeinated beverages that did not taste like alligator urine (aka: free hospital coffee). Uncle Jimbo was a blessing as usual. Tante Gretchen and Uncle Chris came all the way up rom Jordan to visit with a basket of goodies (many of them gluten free, I might add--they get the goodie award), Auntie Reebs did a lovely Ronco-seque demonstration of a state of the art apple peeler/slicer/corer she gifted us right there in the room (she came all the way from the sticks, although maybe more to drink mojitos with pinko feminists than to make apple fries with us, I think?). Roo and Toe were showered with prayers, cards and e-cards, emails, letters, calls, texts, toys, treats and visits, all making the miserable load a little lighter for us. Thank you.
On day 5 we opted to discharge Roo, with the surgeon's approval, feeling that his lack of progress might be helped by returning to the routine of home. Roo's first reaction was to raise his fist in the air and croak, "I'm free!" Because being trapped in a sprawling room overlooking the skyline--with a 50 inch plasma screen TV that was internet/on-demand movie/cable-equipped (and a 19 inch flatscreen computer station and iPad)--on a floor with a 5,000 volume children's library, kids' arts & crafts center and a toy closet bigger than our living room, and being offered ice cream, chocolate pudding and opiates ad nauseum was so terrible. Terrible!
Meanwhile we continue to struggle with recovery. Roo doesn't want to drink or eat much, is not sleeping soundly or deeply yet, and requires an army to administer his pain meds. He is off morphine and slowly testing the waters of normalcy. His biopsy results should be in for his post-op exam on the 31st. Keep him in your prayers! Some photos below (the rest are still trapped in the evil Mac mechanism of the iPad--damn you, Steve Jobs, and all your unholy machines!).
Hub goes kitty kat for pre-op
chez la suite du hopital Amplatz
UPDATE: A few of the "lost" iPad photos...
killing time, killing pain
theoretica'parent bed' (as if sleep were an option)
the wrong sicko
Today is surgery day for Roo, who fearlessly awaits his fate by asking excitedly and repeatedly, "Mommy, when Dr. Rimmel gonna cut me?!?!" He has been running around the house wearing the little oxygen mask from his pediatric surgery-familiarity kit and yelling, "I need my breathing machine!" Oh, Roo, everything is an adventure to you.
Roo loves Dr. Rimmel, the surgeon who will take out his tonsils and adnoids, as well as biopsy his lymph nodes today, which helps. Rimmel is the most tight-lipped, expressionless, recalcitrant and humorless pediatric specialist (ENT) I have ever seen, tops in his field, absolutely no warmth or bedside manner of any sort, brilliant, and kids adore him. He looks at them as a scientist might upon a particularly valuable white rat specimen in a cage, keeping a three-step distance from the little vermin, but has benign intentions. Dr. Rimmel is a walking oddity, but he does great work, and we (and Roo) trust his skills and concern for our little Roo 100%.
So say a little prayer for Roo, who will likely need to remain at Amplatz Children's Hospital for 1-3 overnights for pain control (he can't take oral meds and so will need IV analgesics, etc.), and who will likely face a week of severe discomfort and inability to swallow post-op. Since eating is his favorite thing--and pain his least favorite thing--we expect a time of unhappy Roo, sleepless nights, and heavy hearted Mommy and Daddy. Pray also that the enlarged lymph nodes in his neck which have been causing him so many problems will be benign for signs of disease, and treatable.
The hospital has wifi, so we hopefully be sending status updates through twitter (@bluecollardaugh) throughout the day, via Toe's iPad.
Toe talks to Tom, the ultimate in his imaginary cat collection
Toe's iPad is here, and he and Roo are learning the ins and outs of all their apps.
iHappy for him, I really am. But also, iTired of downloading and syncing and configuring and paper-pushing, of ordering and printing and scanning and faxing and filling out reimbursement forms. iHate shopping, and Toe's grant has become a little like a constant on and offline shopping trip, except you have a whole gaggle of administrators and accounting types ("fiscals," they call themselves) shopping along with you--not physically, but figuratively-- and you have to call upon every part of your medical-school neurons while you shop (except you didn't go to medical school), and your purchase choices could affect the life of your child a lot more than, say, whether you get the chunky or creamy peanut butter. A LOT more.
iGuess what I really need is an autism vacation, something that will never happen, not all my living days, not if I want Toe to have the highest quality of life possible.
So off iGo, to download another app, set up another sensory light, make another purchase agreement, alarm another window. It's just one of my many jobs, and I am glad to have help, even if it is from Apple.
Maybe tonight after Toe is in bed iWill sneak the iPad under my blankie and play a little Angry Birds or chat with Ben the Talking Dog, just for fun.
Roo with his Bic bouquet
I don't really know much of the Hmong language, but living where we do, and loving the study of the Hmong culture, we're pretty familiar with a few expressions: ua tsuag (which means "thank you" and sounds a lot like a sneeze when you say it), moob (the Hmong word for their own people), qaib (chicken) and dab (the catch-all term for any spirit--particularly the many sneaky and worrisome evil ones) are what we encounter most frequently. Draw what conclusions you will about our interaction with our Hmong neighbors from that.
On our daily walks, the boys are always excited to pass by the home of Ying Lee and his elderly father Vang, two very sweet guys outside in any type of weather, working in their extensive garden and tending their qaib. Ying and Vang inexplicably have a special tender spot in their hearts for Toe and Roo, stop to patiently listen to their excited chatter, smile and show them a disgusting bug or enormous vegetable they are proud of. Roo, a flower-loving fool, always make a point to admire their beautiful blossoms and sometimes takes a picture.
Today as we approached the Lee's house, the elder Vang came rushing out his door with a bouquet of silk flower-topped Bic pens he'd made for Roo. Roo was so happy, he did his little joy dance (that looks a lot like someone caught in a fit of sneezing, coincidentally), and piped, "Look, Mommy and Daddy! Pink rosies, red rosies, carmay-tions, beebee's breff! I got flower pens!"
Then he turned to Vang and said, "Ua tsaug! Ua tsaug! I love you!"
And that made me do my little joy dance, but I'm not really a good enough writer to adequately describe to you what that looks like.
Did you watch the majestic gore and flashy-toothed barbarism that is Shark Week? Did you? I'll bet if you've got cable and boychildren you did. A little anyway.
I escaped mostly by providing my lads with the elusive Sharkleberry Fin flavored Kool Aid (which people are always clamoring for on ebay and Amazon for outrageous prices, and which always seems to be in stock on the shelf of my neighborhood Pak Men store for 27 cents). I also hiding in my room to watch a library rental DVD, Soul Surfer (not a ground-breaking piece of film, but a wholly Christian story that was very beautiful--check it out!). That was as sharky as I got.
We made some changes around the BS Haus:
1. Hub totally and abruptly gave up his eternal beloved. That's right, no more sugared soda. In fact, he has switched mostly to Propel and sugarfree softdrinks, leaving soda behind in the scorched earth of his youth, without even shedding a tear. A truly "when pigs fly" moment.
2. After much hand-wringing and inner debate, I chose to stop taking my one most effective nerve pain medication, Lyrica. The constant nagging headaches were a bearable side-effect, but the inability to eat over 700 calories a day without gaining great amounts of weight has started to caused a host of nutitional deficiencies, and left me feeling depleted despite the 50% reduction in my pain. My own doctor flushed her Lyrica (for seizures) when she padded on 3-7 pounds per month despite running marathons, so I feel in pretty good company. We'll see if this pig flies.
3. Tovi's grant has been unfrozen since the state shutdown "resolution", and now the autism-adaptive supplies are finally rolling in (something I truly had my doubts would ever happen for us). His iPad arrives next Tuesday, complete with a host of therapy apps and a number of adaptive accesories, and in a few weeks, a $3000 adaptive bike that would have taken a miracle for us to provide. And, in the next 4 months, $23,000 worth of additional needs (such as window and door alarms) will also come to make our home a truly perfect environment for his development and success. next year's grant will allow us to install a more secure outdoor perimeter through new gates and fencing, and Toe will begin receiving Project Lifesaver International tracking services. By January 2013, Toe will be celebrating his 8th birthday with a fully trained ASD service dog
(That is, if those adorable little piggies keep flying).
mornings on the Eastside start with a little salsa
When I asked Hub what he wanted to do for a vacation day of summer fun, frankly I was expecting a reply that contained some combination of the words: hammock, butt, Pepsi, nap, bacon and possibly even disguise.
But, no, he wanted to take his boys on a random inner-city trek, via public transportation, and love on our beautiful city and all its freebies. He may as well have suggested we hitchhike to Mexico to work as a family of clowns in the rodeo at Zacatecas.
Alas, the photo essay of our adventure (including cowboys!):
Roo 'enjoys' a gentle cranial massage from his big bro as we wait on the 64B
practicing the Eastside art of loitering
Cora's wing-mobile: bringing flavor and hyperlipidemia to the neighborhood
the Payne Avenue equivalent of the Google Alert
another photo for Toe's 'Dogs of Randomness' collection
sign, sign, everywhere a sign...
DO NOT sit by this child on public transportation
nor this one
in St. Paul it's not a concert without a big orange bucket
not a dog
Sven, your basic inner-city cowboy
fruits of the Famer's Market: rhubarb pie waiting to happen
who needs a car?
we got one of these...
...NOT one of these!