Thursday, October 23, 2014

Speaking of Caden's Heart . . .

The last week has been quite the reminder for us of all that still lies ahead with Caden's heart. One of the most reassuring things we felt coming out of our (nice and short) hospital stay this time was how completely well-cared-for we feel whenever we are at Children's Healthcare of Atlanta. When Caden was born, we had no idea that anything was wrong with his heart (if you're new around these parts and haven't heard the whole story, feel free to take a minute and get caught up). The first question most everyone asked us (including all the doctors and nurses), is whether or not we knew ahead of time. And even though we did not know (eliciting much sympathy), we were grateful to the Lord for sparing us the stressfulness we probably would have experienced during the house-closing-debacle if we had known of what lay ahead for us with Caden. We were particularly grateful knowing that no matter how much googling and other research we would have done before Caden's birth, had we known about his heart defect, we would have ended up in the exact same place. CHOA is one of the leading hospital for pediatric cardiology and we would not have wanted to be anywhere else. We count our blessings for living in a city and a home where we are fifteen minutes from this hospital, making everything easier for us - from childcare for Jayci to showers and laundry and resetting our hearts at home when we had to leave Caden's side for rounds etc. We were grateful for the reminder this weekend of how well-cared-for Caden is while he's in the hospital with CHOA.

All of that to say, we are profoundly grateful to Children's Healthcare of Atlanta. They saved Caden's life, for sure, and there is simply no way we can measure in words the ways they helped make some of the hardest weeks of our lives a little easier. The nurses and doctors were amazing, and they deserve celebrating for the hard and holy work they do day-in-and-day-out at CHOA. Because we are thankful, and because we want to pass along some of the encouragement and love y'all showered us with during Caden's hospital stay, every year we put holiday baskets together for the families who have to spend the Christmas holidays in the CICU.

A few months ago, when Adam and I were having one of our many talks about how we can possibly juggle all-of-the-things, I told Adam I really wanted to do the CICU baskets again, but I kind of felt like it was one more ball to juggle that might possibly make me drop all-of-the-balls. I am not good at organization, or having space for putting together baskets, or making sure every bag has one of everything (this is inexplicably very hard for me). Adam suggested asking his superheroes-of-organization sister and mom to handle the logistics for us, and I couldn't agree fast enough.

True to form, they are super-duper on top of things, and have already put together a fundraising page were you can go and donate to make these baskets a reality. I would love for you guys to be a part, particularly since you all played such a big role in making Caden's hospital stay bearable for us.

Truthfully, we don't know the next time Caden will be hospital. It could be Christmas, and I know how helpful and beautiful it would be for us to be the recipient of something like this. So if you could all go and make a donation (every bit helps), we would really appreciate it (and I know all the families with heart babies this Christmas would too). The money raised will go straight towards putting together baskets, as well as some sort of thank-you for all the nurses who have to work on Christmas day (and night) in the CICU.

In case I haven't mentioned it lately, y'all are awesome. For realz. Be sure to go visit the CHOA Christmas Basket page on YouCaring today :-) And thanks again!


Tuesday, October 21, 2014

Interruptions

Near 1:30am, Adam tells me it might not be a bad idea to come home. Trying to keep back tears, and stay away from frantic, I gather the stuff I have already scattered across the hotel room. We have only been at Callaway Gardens for the women’s retreat with our church for a few hours at this point. One roommate snores, and the other two help me gather strewn belongings, both of them offering to drive me over an hour back to Atlanta. We have only been on the road ten minutes when we get pulled over for having a headlight out. The officer appears skeptical when we insist that my son is in the hospital, perhaps he gets that story a lot.

Thursday night, Caden slept like a newborn. Awake every two hours, he complained my ear hwurts loudly and often enough that I suggested a visit to the doctor. His checkup that Friday afternoon revealed no earache or fever, but a chest rattle along with slightly lower-than-normal oxygen saturation levels. We called the cardiologist who told us to head to the ER if Caden started acting differently or things took a turn for the worse.

Meanwhile, I headed to Callaway and enjoyed lots of laughter with some neighbors and friends over cheese dip and margaritas (of course) in a tiny-by-the-roadside-sketchy Mexican restaurant on our way. After get-to-know-you games and a pajama party, we camped in our room and chatted until Adam called because Caden was freaking out. He wanted mommy, and couldn't stop coughing. Adam explained over the phone that he felt a little warm and body was shaky-upset. I told Adam that if I were there, we’d already by on our way to the ER. A neighbor came over to watch Jayci, and Adam sat in traffic headed to CHOA while Caden cried and coughed until he finally fell back asleep.

By the time they got to the hospital, the clock tipped past one in the morning, and Caden’s fever had shot up to 102.9. Between his coughing and crying, his oxygen sats were in the 70s, alarming particularly for a heart-kiddo whose normal numbers hover around 98-99. At this point, Adam asked me to come, and I’m not sure he could have kept me away anyhow.

We witnessed enough during the first month of Caden’s life to make it difficult for my mind not to flit quickly to worst-case-scenario. I am calm somehow, but also scared and anxious to be holding my baby. We small-talk and deep-talk and make our way through the darkest-dark with no street lights; until finally we approach the city, bright with neon signs and billboards and cars filling streets even as the clock nears 2:30am. I drop my friend off at her house (just a few blocks from my own), and by this time Caden is sleeping with his temperature and oxygen levels back to normal. He’s still on oxygen and I.V. antibiotics, but my own feverish cough means we are uncertain they will even let me in tonight. Instead, I relieve the neighbor and snuggle Jayci cozy under her blankets. The next morning (or rather, later that same morning), I drop her with my mom before heading to the hospital.

My body somehow recalls viscerally the things that seem in my mind only distant memories or dreams. Circling the parking garage looking for a spot, my heart rate elevates and butterflies flutter in my belly. The ding of the elevator, the smell of the hand soap I use again and again until my hands are raw and scaly but definitely clean. I don't know how, but I somehow nearly forgot the hard and holiness of this space. The big blue button behind Caden’s bed stamped CODE BLUE sends shivers, and I avert my eyes quickly. Clear oxygen tubing snakes behind his ears and under his nose, big pieces of tape hold an IV in place, and his finger glows red from the pulse-ox, while numbers fluctuate gently on the monitor behind him. We are on the oncology floor, because the cardiac unit is full. Which means isolation, and nurses who breathe through masks, and no wagon rides or any leaving the room. The three year old should be climbing the walls, but instead he sits pale and quiet on his bed, playing with the button to lower and raise his feet while he watches football with his daddy.

We realize with jolting clarity how hard Caden’s next surgery will be. He wants his mommy, he needs his daddy, and he screams bloody murder because he cannot fathom what-in-the-heavens they are doing to him. We hold him close, gingerly working around tubes and wires, singing row, row, row your boat in a round, as per his ridiculous request. I notice the tiny freckle between his shoulder blades, and run my fingers through his fine blonde bed-head. I apologize to Jesus for the past three years, and how easily I have forgotten the desperate and constant prayers of the momma with a sick baby. My knees find their way easily back to the floor, and I plead with Jesus not to punish my son for my short-memory, even though I know with stunning certainty that’s not how He works anyways.

The triple-team of cardiologist crowds in his room, all of them in full gown and masks. Everything they say sounds slightly more disconcerting through the pale yellow held over their mouth and nose. Thankfully, they assure us that they are treating this as simply a respiratory infection with pneumonia on top, both unrelated-to, and hopefully not affecting his heart. Because of that, they decide not to do an ECHO while we’re in the hospital, but we should see our cardiologist this week to let him take a look. After all, his sats did hover really low and his last cardiologist appointment showed sharper declines in heart function than they’d like. So this reality, another hospital stay on the horizon, feels sharp and closer than we thought. We stare at the hospital walls and try to entertain Caden in a single room with declining success in direct proportion to his rising health. For which, of course, we could not be more grateful.


So I spend my weekend here beside my son and husband. Nose alternately in a book, singing songs with Caden, and watching Monsters University. We color together and play patty-cake, and quickly say even more prayers for our friends who have to do this longer than three days. I am sad to miss the retreat, I tell Adam. Ironically, the theme was Renewal - something I thought I really needed. I forget, of course, that Jesus knows us better. He knows when we need lessons and time on our knees. When we need our family and each other, and a reminder of just how breathtakingly beautiful the Body of Christ can be. How she, like me, might have more scars or stretch-marks then we’d like to notice or admit. How she can be ugly and petty and certainly competitive or focused on all of the wrong things. But beneath it all, she is also beautiful. She lifts us and carries us, she encourages and covers us with unfailing prayers and reminders of grace.

Mostly, I want to thank-you. For the ways you continue to rally and love and encourage us, even in our darkest moments. The ways that each of you make this road of ministry and parenting and heart-babies easier. Or if not easy, at least shared. I will keep you posted after our cardiologist appointment on Friday, but for now Caden is back to his normal crazy self. His naps are still slightly longer than usual, and he has slept later than 7:15am the past three days in a row (which might be a record), so we are grateful and glad. The antibiotics for his pneumonia seem to be doing their job, and we are still hoping for another year at least before his next surgery. Dont worry, we will keep you guys in the loop as far as what the cardiologist says on that front this week. Thanks again!

Thursday, October 16, 2014

31.15 :: Because We Are People Who Pray

I'm going to spend my time walking today praying for my sweet friend Anita and her little boy Rocco 9 (well, for their whole family really). Since I told y'all about Rocco originally, they changed his diagnosis to Burkitts lymphoma, and he just finished his second of four rounds of chemo. You can follow his journey on his Caring Bridge site. I remember so clearly how this community prayed us through Caden's heart surgery, and I'm not certain we would have made it through that time without it. So I know that y'all are a people who pray, and that your prayers are faithful and loving and helpful and beautiful. Which is why I'm asking for you to raise your voices in support of my sweet friend. 

Rocco's daddy shared a few specific prayer requests on his latest journal entry at Caring Bridge: The next several days will likely be when his white counts drop the most and leave him susceptible to infection .... Please pray that God would once again supernaturally intervene and protect him from exposure. Please also pray that the side effects from the chemo would be radically less than advertised.

Thank-you for the ways you pray for and with me, and even for following me along my 31 miles. Y'all are the bomb. 

Wednesday, October 15, 2014

31.14 :: When Things Get Real

Yesterday, I wrote about walking in the woods. And yes, it was all true. But here's the thing: beautiful words about how I meet God in the details of walking in the woods cannot quite capture the entirety of the experience that was our camping trip.

We indeed enjoyed a lovely hike, perfect temperatures, and a successful tent and campsite set-up (ok, ok mostly by Adam with the children's "help" while I lay in the hammock and read Orange is the New Black). However, the children found themselves in rare bickering and disobedient form. I always feel somewhat cheated when this happens on a special trip. Like, if we are taking the time to do for our kids something we wouldn't necessarily be inclined to do on our own (camping would fall into this category for me), they should reward that sacrifice with excellent behavior in order to create maximum family-fun memories. Am I right? Someone forgot, apparently, to give Jayci and Caden this memo. They were decidedly not on their best behavior.


I tried not to lose my patience when they asked a million and twelve times if we were almost to camp (Caden, in particular, seemed confused as to our destination and the difference between camping and camp grace). Upon arrival, everything was taking entirely-too-long for their liking, and the endless complaining about drove me to the brink. Deep cleansing breaths and small jaunts deeper into the woods for a few minutes to cool-mama-down were in order.
Jayci's attitude towards me pretty much the entire time can be summed up with this one picture. You might think she's just joking around and sticking out her tongue for the camera, but look at her eyes (it's all in the eyes). 


Anyways, we pulled ourselves together enough to enjoy our afternoon and to cook a nice dinner over the fire. Although, of course,we forgot plates and utensils and ate potatoes with our fingers from red solo cups. We also forgot the marshmallows (which were unfortunately in the bag with the plates), and this caused much weeping and wailing and gnashing of teeth. Caden is in the phase of killer-loud-and-obnoxious-fake-cry, FYI.
 With both kids messy already, they drank a cup of hot chocolate (in place of marshmallows) by head-lamp, and we got them at least semi-cleaned up for bed. Sighing with relief, we slipped into camp chairs next to the fire and listened to the kids giggle in their tent. Looking at Adam with eyebrow cocked, we made bets on how well the tent-sleeping thing was going to well. Hint: we both thought not-neccessarily-well, but I fell on the side of decidedly less-optimistic than Adam did. 

We adjusted sleeping bags and tried to figure out how to pad the ground adequately and zipped and unzipped and tucked and re-tucked. Finally, Caden fell asleep and when Jayci grew silent for a few moments we assumed she was sleeping too. We sipped our own hot chocolate and talked quiet under the stars. Jayci, however, ended up not-so-much-sleeping as getting-sick and freaking-all-the-way-out. She was feeling-some-kinda-way such that Caden woke up, and everything got disastrous and we ended up packing up the camp at midnight and heading home. 

And I spent the next day doing approximately 17 loads of laundry to disinfect and clean-up, and I'm counting that as my walking for the day. Because laundry is far-more exhausting than walking.

So there you have it: real talk about camping trips and walking in the woods.

Tuesday, October 14, 2014

31.13 :: Walking in the Woods

Leaves and twigs crunch and snap under my worn Nike’s. The ground forgives, damp and spongy. Caden and Jayci run behind and before and beside us, jumping over roots and gathering acorns to toss deep off the path. They squabble and make-up in rousing circles, particularly after Jayci “accidentally” hits Caden with an acorn or two.
Shhh I tell them: listen.

They look around quizzically. We dont hear anyfing, Caden informs me.

Exactly, I tell them. Listen closer. Now what do you hear?

Quiet, they say. Bugs. Birds. Leaves. Water.

We trudge quietly for just a minute, I savor the silence gathering under the soaring tree tops. Closing my eyes and drinking it deep, before the chattering from my children rises in cresting waves and we continue our hike. We head down on a winding path, meandering lower and jumping over fallen trees.

The sun has begun its slow descent beneath a cloudy cloak. Its light filters gently through the trees, not golden so much as pale grey, reflecting with gently brilliance on the lake beneath us. The effect is unnerving, reflecting such that I cannot tell sky from water, nor up from down.

Emerging from the trees onto the lakeshore, we clamber over shale slices and Adam skips rocks with quiet splashes across the water, while Jayci and Caden land theirs with satisfying kerplunks.

We are alone, but not really. The pebbles we toss into the water make ripples that widen across the lake.

Later that night, we gather around the fire to roast biscuits and chicken while Adam concocts some delicious potatoes over the camp stove. Caden and Jayci grow impatient, eating their biscuits doughy and clambering around the campsite, accumulating dirt across their shirts and beneath their nails.

The sky seeps to inky black, and we tuck the kids into their tent before huddling together close to the fire, even though it’s not really all that cold. Still, the back of my calves feel chilled to the touch, while my shins flame with heat from the glowing embers. We cannot see any other campsites nearby, though occasionally we hear distant raucous laughter from a group much further down the trail.

Adam and I eat biscuits and potatoes like communion, passing a cup to one another across the flicking light from the flames. Overhead, the trees sway dark silhouettes against a navy sky, illuminated by an occasional flash of lightening without accompanying thunder. We curve our backs closer to the warmth, and the peace God promises feels so near we can taste it. Smoky and flecked with ash, hard won and gently nurtured from spark into flames.

The cicadas sing their chorus and we close our eyes to listen to the crackling fire and rustling leaves, our fingers entwined in the dark night.

"Never did I think so much, exist so vividly, and experience so much, never have I been so much myself- if I may use that expression - as in the journeys I have taken alone and on foot. There is something about walking which stimulates and enlivens my thoughts. When I stay in one place I can hardly think at all; my body has to be on the move to set my mind going." - Rousseau

Monday, October 13, 2014

31.12 :: Readings

A few quick links for your week; because I am so tired from all-of-the-crazy, I have no time or energy for writing myself currently.

Want to know why I'm so tired? You guys, this (warning: do not read if you're going to be offended by some language!)
"I am not pregnant, but I've had three kids and there is a 'bump.' From now on ladies, I will have a 'bump' and it will be my 'baby bump' and let's just all settle in and get used to it, it's not going anywhere." - Jennifer Garner

“I am convinced that most people do not grow up ... We marry and dare to have children and call that growing up. I think what we do is mostly grow old. We carry accumulation of years in our bodies, and on our faces, but generally our real selves, the children inside, are innocent and shy as magnolias.” —Maya Angelou
25 Famous Women on Aging - NY Magazine
24 Surprising Things about Parenting in the U.S. - A Cup of Jo

Come in - from my girl Shannan at Flower Patch Farmgirl.

"I want to hear what my neighbors say." Quiet time confidential with D.L. Mayfield. - at A Little Yes
Who Told Me? (part of Esther Emery's 31 day series of Church in the Woods, the whole thing is just lovely).
Ebola is a Inequality Crisis - Jim Wallis
'In 1976 I discovered Ebola - now I fear an unimaginable tragedy' - Peter Piot
In this context, walking is a subversive detour, the scenic route through a half-abandoned landscape of ideas and experiences. - from Wanderlust

Saturday, October 11, 2014

31.10-11 :: On Building Community

Today, like yesterday, I have spent most of the day hauling camera gear, along with a light on a giant stand across smooth concrete floors. Taking pictures of pretty flowers and vases in every conceivable nook and cranny of a sprawling showroom. Most certainly, we walked a mile (just ask Maddie). So when I got home, I thought that maybe I could/should just skip the day's walk. After all, it was already dinner time. And after dinner, things only get more hectic as we inch towards bedtime through the landscape of grouchy and tired and I-dont-want-to-go-to-bed.
But I still vaguely remember the lesson I learned yesterday about intentionality. So I begrudgingly decide to walk our friend Ava home instead of driving her. Luckily, Jayci opts to stay home and help daddy with dinner (pioneer woman!), so Caden climbs next to Ava in the stroller and we head down the street.

The corner bustles around the green-walled corner store. The bell over the door rings constant trills, and the man waiting outside tips his hat to us before asking if he can hold a dollar for some trap chicken.

I never have cash anymore I tell him, which is entirely true. I'm walking unfettered tonight: just the the stroller, the kiddos, and me. The light blinks yellow/orange, then red, we cross and continue down the street, the strong smell of greasy fried chicken fading as we pull away from the store. I step over a hair net with weave tangled through it, and take the stroller through the grass to bypass a mattress and a pile of tires.

As the sun sinks ever-lower, the sidewalks turns glittery magic with shards of glass catching rays of sunshine and flinging them back to the sky. I stop and talk to Mikey, who we met at our Thanksgiving feast. She sits on the covered bench painted with flowers Adam built by the Marta stop, and when I ask where she's headed she tells me just resting my feet for a minute Becca.  We hug and chat about the perfect fall weather, and she peers in the stroller to say hi to Caden: he refuses to respond, as per usual. I shake my head and we laugh at his ridiculous shyness.

We turn off the main street, and I am greeted by a gaggle of children who want to know when we can go back to Camp Grace. I walk with one hand pushing the stroller, while the other grips one of the twin's hands, though I still have trouble telling them apart so I just call her punkin. The smaller kids try and climb in next to Caden and I shoo them out, telling them they can only climb in if they are four-years-old-or-younger. Immediately they all insist they are, in fact, four years old.
 
I have a sneaking suspicion, growing as I tread even now over cracked sidewalks, that the way community builds and Kingdom comes is just like this: one step at a time. One foot in front of the other, even when we are tired and empty. Because in our emptiness we walk smack-dab into His fullness.

Swerving around empty Colt 45 cans, the light catches weeds and graffiti just right and they shimmer like mirages, an oasis of art in a vast barren landscape. I chat, however briefly, with everyone who crosses our path. Cars honk as they buzz past on the busy street, and I wave a hand or smile broad in response.

Something about walking through here feels subversive, directly opposing the forces that declare these streets unsafe. We walk past Mikey again; I stop, and we sit side-by-side, both of us just resting our feet for a minute. 

Walking through the neighborhood we call home, I recognize the Kingdom that is both here and not-yet. I find the beautiful and the broken, reminded how impossible it grows to separate the two. Community builds slow and steady, gentle and strong, one step after another on a sidewalk that ends abruptly in a patch of grass. We cross the street and point ourselves back towards home, reminded anew of the ways God has called us to this place, to our neighbors, to each other.

Walking is about being outside, in public space, and public space is also being abandoned and eroded in cities, eclipsed by technologies and services that don't require leaving home, and shadowed by fear in many places (and strange places are always more frightening than known ones, so the less one wanders the city the more alarming it seems, while the fewer the wanderers the more lonely and dangerous it really becomes). - from Wanderlust

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