Friday, October 21, 2016

On Tuesday

I realize I haven’t done a very good job keeping y’all up to date on the details and the latest with Caden’s upcoming surgery. I want to keep you informed, because we appreciate so deeply your prayers and the ways you cover and carry Caden with your kind thoughts and prayers, and I am grateful for the opportunity to give you the information you need/want to pray more specifically. 
Every morning Caden wakes up and pops out of bed, hair messed and sleep lingering in his eyes. Mom, he asks, how many more days until they cut my heart open? It’s jarring, his words, particularly before my first cup of coffee. Nevertheless, we count together: Friday, Saturday, Sunday, Monday, Tuesday. Five days. He announces this number cheerfully to his big sister, before opening the fridge to find some yogurt, currently his favorite breakfast food. Despite his upbeat protestations that he isn’t nervous, he stays out of sorts, melting down with all-the-big-emotions on a regular basis throughout the day and especially at bedtime. Our usually compliant boy cannot handle simple requests, and I wonder if perhaps the anxiety is weighing on him even if he doesn’t understand it fully.

Next week Monday (the 24th), we will spend the day at the hospital doing pre-op (echocardiogram, blood work etc). Then we will sleep at home, and head back in the next morning for his surgery. The surgeon (the same one who performed his first surgery) explained that they will cut through the scar tissue from his last surgery to open his chest (and also that this portion of the operation is the lengthiest and riskiest part). Once his chest is open and he’s on bypass, they will replace his pulmonary valve with a larger donor valve, and they will also patch his pulmonary artery where it’s been narrowed by scar tissue. The entire surgery will take at least a few hours and we will wait in the same waiting room we sat in five years ago for about 6 hours, updated with phone calls from nurses (side bar: I am not relishing being back in that room and waiting for those calls).

This surgery is much less complicated than his first surgery was. Nevertheless, the surgeon explained it's not without risks, particularly of bleeding and infection. They will most likely not have to leave his chest open, which is a relief.

After surgery, Caden will spend a few days in the Cardiac ICU at Egleston, and then a few more days in a step down room (private room where we can sleep with him). Overall, he will spend about a week in the hospital, and then another week of recovery at home (which is astonishingly quick recovery-time in my opinion). Anyways, we have so much lovely family who will be helping with the other two while we are in the hospital and helping Caden get better.

While Caden remains cheerful and excited about his surgery, Jayci leans much more distraught and anxious. After we told them about surgery, she pulled me into the other room and told me I didn't want to scare Caden but I'm really nervous. I want to trust Jesus but it's so hard, I'm afraid something will go wrong. I wish this had never happened to his heart. To which I had no good answers except Absolutely baby, me too. But we are going to have to choose to trust in the goodness of God together. We prayed and I cried a lot afterwards. Yesterday, Jayci’s teacher called to tell me she was upset about Caden and wanted to talk to me.

It’s been difficult to balance preparing our own hearts, preparing Caden and Jayci, and making practical plans for the next weeks. All that to say, we are so grateful for you all and your continued prayers and support and help. I am not sure we could walk through this without each of you.

We would love continued prayers for peace for all our hearts. For the surgeon and doctors/nurses. For the surgery to go perfectly, and recovery to be easy. That Isaiah would sleep for his aunts/uncles/grandparents, and that Jayci wouldnt be afraid. Pray particularly for Caden's unspoken fears, and for wisdom for Adam and I in how to love him and support him well through all of this.

Thank you all! And we will do our best to keep you updated on his progress etc here so I don't have to answer individual texts/emails etc and can instead focus on loving our sweet little buddy. If you want more ways you can help, let me know and I'll try to point you in the right direction!

Thursday, October 6, 2016

When 8 Sneaks Up on Us

My dear sweet Jayci,
You are standing on the cusp of something I wish mostly that I could pull you straight back from. Alas, time marches on, and so I will settle instead for praying for you and with you, for cheering you on and occasionally shielding you a little when the need arises. As girlhood blossoms into the earliest blips of womanhood already, I have to admit I'm a little afraid. Proud of you, and oh-so-smitten, and afraid. The world is an unforgiving place for women, even today. Even after years of hard-won-right-to-vote, and with a women candidate for the presidency. Still, the world hollers for us to quiet down, to lose some weight, and know our place. To support our family and work hard, but not leave our kids at day-care for too long. The expectations heap, and I know it starts young. So I want, more than anything, for you to figure out who you are shaped to be outside of the weight of all those expectations. For the only thing you think about your body when you look in the mirror is wondering  how well you are using it to love the world around you. For the muscles in your heart and mind to be flexed every single day as you grow more and more unafraid (rather than more afraid like the rest of us) to show the world all of yourself: your flaws and your strengths, your compassion and gentle wisdom, your quick flame of temper and your careful acts of forgiveness and contrition. All of you, my sweet girl, is loved and worth loving, no matter what.

You are absolutely adorable, with your snaggle-tooth grin and shy stubborn insistence on performing songs and giving gifts for all-the-occasions. More nights than not, I have to confiscate your flashlight, because you are using it to read books under the covers while the street-lights blink off outside your window. You ask really good questions and sometimes know more answers than I give you credit for. You love your brothers fiercely, even though they have already mastered the art of eliciting an eye-roll (another trait you apparently inherited from me). Your beauty goes deeper than your skin, beneath your light freckles and gentle blue eyes to the inner-most parts of your heart, where you notice the forgotten and encourage in careful ways all the ones who are hurting.

One of my friends told me that she saw a picture from your birthday party (one we printed and gave to all your guests at your request) posted on the Spelman alumni Facebook page as an example of great love and beauty in the midst of racial tensions and hatred and fear. I am so proud of you for this, because you created that space with far more careful planning and cultivation than even your daddy and I did. You set aside your own crafts to make sure there was room for everyone at the table. You waited to greet newcomers, and made sure each person got equal time on the tire swing. Your kind and gentle spirit was a joy to witness, even as I tried to catch my breath because entertaining so many eight year olds is no-small-task, even for your daddy and me (who consider ourselves something of experts at entertaining many children).

But seriously sweetest girl, here’s the thing: if you can hold tight to that most beautiful piece of who you are, the deepest down truest part of you, I do not doubt for a second that you will be a woman who changes the world. But I also need you to know that when I say "you will change the world," I do not mean you need to be perfect, pretty, put together, successful, rich, or president. You don’t need to run a giant corporation or discover the cure for cancer (although if you want to do those things, please go right ahead). What I mean is that your heart will make the world around you a better place. Your compassion and gentle spirit, your kindness and wisdom, will always turn the needle towards justice and peace. And I believe wholeheartedly that you will keep ushering in the upside-down Kingdom just like we always prayed you would: by loving Jesus and loving your neighbors in tangible ways every day.

Being your momma is my greatest joy and honor, and I do not take the responsibility or pleasure lightly. I hope that even as your growing pains keep you up at night, even as you wrestle through your doubts and fears, even as you cry over hurt and loss and a broken world, that your heart will stay perfectly tuned to the song that the Savior is always singing over you, the song He has written just for you.
I love you always, even more with every passing day,

Monday, September 26, 2016

"Success Stories"

The world these days feels heavy and forbidding, or perhaps just slightly depressing. We find ourselves forced to choose between two possibly equally terrible choices (but I'm Canadian and can't vote, so let's be clear that I am not making any political statements here). We discover we have no option but to move forward even when the innermost sanctum of our hearts urges us to play the ostrich and bury our heads in the sand.

We've been told that our ministry cannot be supported because 1-we don't "hard sell" the Gospel enough or have an ambitious and large enough growth strategy, and 2- we don't have consistent enough church attendance. And so we wonder if perhaps they are right, if maybe we are accomplishing nothing by the pouring out of our very lives. We catch eyes across the table, and wonder together if we truly are the kind of foolish we have been deemed by others who have been doing this longer and with more "success." Too soft, too full of grace without enough practicality and law. Not enough bars on our window and no security cameras making sure we know it all. Too naive, too gentle, too easy-going, too much of everything except all the right things.

And so, a new post on the blog. I won't call it a series, because I think we all know how those turn out for me (follow through is hard. Exhibit A: Whole30). But I'm posting here in what I can only hope is an act of prophetic imagination, a railing against all the world demands of us as a nonprofit and "ministry," against statistics and effectiveness and everything the empire deems "success." Instead, a celebration and acknowledgement of the still small voice we occasionally hear whisper "well done good and faithful servant," right in the midst of the smallest stories that may seem foolishness to the world but nevertheless ring true and holy in our ears. We are staking a claim, erecting an ebeenezer to remind ourself that our standards of success are rooted not in numbers but in love. In faithfulness, not effectiveness; in relationship rather than "saving" a single soul, because that is only the work of Christ. So here's to moving down the ladder and loving the least of these in fumbling imperfect ways every single day.

She yells to me from the fence beside our blackberries bushes, "hey Becca!"

"Hi Mikey," I wave back and smile wide, offering her some strawberries from the garden. "Oh no," she waves them off, "I just wanted you to know I'm going to Missouri for a while. That's where I'm from, and I'm going for a month to visit my family and I didn't want you and Adam to worry."

She is probably in her late 30s, and most often I wave to her while she sits on the street corner across the way, or when she asks to borrow a dollar for the bus or for some corner-store chicken. For a while, her pimp rented the house behind us, and I would watch black BMWs circle the block to pick her up and drop her back off at the crumbling front steps. She never waves to me on these circles, only later when she walks by, and I run down to offer a hug or a slice of leftover pizza (we always have lots of Little Caesars pizza around here). She asks if she can "hold a dollar," and I hand her whatever change and snacks we can scrounge up while the boys shake their heads and her and at my eagerness to offer her something.

I have a necklace to give her, a key engraved with the word hope. But somehow I lose it before I muster the courage to offer it into her hands. What will I say, I wonder: how will I explain the hope I wish her to hold in her heart, without sounding hokey or lame, or pushing her further away than she already floats by circumstance and the inevitably of life?

We met her at our first thanksgiving feast, when I held baby Amir and summoned my courage to invite the group on homeless men and women congregated by the corner store to come in for the golden turkey Adam brined to perfection, and the $200 pan of macaroni my parents brought from Whole Foods.

Since that night, and at every Thanksgiving feast, she stops by for the meal; and then occasionally for dinner or cookies in-between.

But we count it "success" when we stops by to tell us she's leaving for a month, even as we wish we could offer more. Because we will gladly take the mantel of being the ones she knows will care, those who might notice her absence. We don't understand her whole story, and can only hope one day we might have the privilege of listening in and holding it close to our hearts and to His. But until then, we will settle for being the ones she takes an extra loop around the block for, the ones she tells she is leaving because she knows we see her and we will notice when she is gone.

“God has not called me to success, but to faithfulness” -Mother Teresa

Sunday, September 18, 2016

Podcasts and Books and Docu-series, oh my.

Ok guys, I realize no one actually reads my posts these days, particularly the ones involving links and recommendations. But it's impossible for me to stop, because when I find something I love, I feel like it's not enough for me to text a couple people and tell them: listen to _____ asap, or watch _____ immediately. All that to say, sorry not sorry. And here's some of my favorite things I've been reading/watching/listening to lately.
First off, if I've said it once, I'll say it a million times -- preorder my girl Shannan's book today. Even my friend Father Boyle recommends it, which is basically the highest praise I can imagine.

Adam and I just finished watching the docs-series Last Chance U on Netflix. You guys, I cannot think of something else I watched recently that made me so happy/sad/entertained all at once. Granted, all the players at this community college reminded me exactly of every single one of our boys, and I want to be Ms. Wagner forever. Also, we watched and loved Stranger Things, but I'm assuming all of you already know about that one!

Malcom Gladwell has a new(-ish) podcast called Revisionist History. Right after I listened to an episode called Carlos Doesn't Remember, I immediately texted some of my favorite folks and told them to listen asap. So consider this your text from me -- listen to this episode. I also loved the recent episode of On Being (always one of my favs), with Ruby Sales (the episode is called Where Does it Hurt?)

As far as books go, I have been reading like crazy lately. Consider it my healthy(-ish) form of escapism from life when its too insane (read: always). Anyways, I've read a few that I loved and wanted to pass along those recommendations to you. I started off by reading Jesmyn Ward's memoir, Men We Reaped, and I loved it so much that I immediately ordered all her other books from the library and read them all in quick succession. They were amazing, although her memoir voice is still my favorite. I think her words are beautiful and inspiring and hard and necessary and important. Highly recommend.

Finally, I sent an email newsletter with an update (well, as much of an update as we have) on Lee and also the latest details on Caden. If you're interested, you can sign up here (also, we have a meeting with the surgeon on Wednesday to discuss details and timeline and all the risks etc, would love you guys to cover that time in prayer).

Tuesday, September 13, 2016

Confession and Assurance

Last week, the sweet church plant where we have been attending the last few months in our neighborhood asked if I would write and read a prayer of confession. I agreed, of course, because I always do; then panicked about trying to write something worthy of being read aloud in church, even in front of just a small group of folks. Nevertheless, I said what was laid on my heart, and I thought maybe someone else might need to hear this as much as I needed to write it.

I am always praying for each of you, and grateful for all the ways you point me to Jesus.
Merciful Father, we confess that again and again we fail to remember who you are, and
therefore who we are. We try to earn your love with our broken notions of obedience and
sacrifice, rather than resting in the truth of who you have made us to be and the things you
require of us.

You call us to love as you love, to seek justice, mercy and truth in a world and community in
desperate need of you. Instead, we turn away from those in need and remain silent in the face
of injustice. We clutter our hearts with the trappings of the world, filling our lives with all the
things we think we need apart from you. We refuse to abandon the American dream, failing to
realize that you are calling us instead into your upside-down Kingdom where the first will be last
and you gain your life by losing it. We pray this morning that this Kingdom will come even here
and now. We ask that the truth of our belovedness will always spill over from our hearts onto the
hurting world around us.
We have developed cases of spiritual amnesia, forgetting the very forgiveness you tell us to
remember with the breaking of your body and the shedding of your blood. Help us in this space
to recall in our hearts the things we have forgotten. To remember the depths of your grace and
the cleansing waters of your forgiveness. And I pray that having washed, we may know the joy
of living in right relationship with you, our loving Father who always forgives because of Your
faithfulness and not because of anything we have done or can ever do to deserve it.

Remind us here of your brokenness for our wholeness, for the blood you poured out to cleanse
our sins and make us new. Remind us that we are never too far away from you to decide to
draw nearer today. We offer you what we can today, all the pieces of ourselves we try to hide or
think aren't good enough. Forgive us for not trusting you more deeply, and thank you for the
ways your love makes us new.
Lets hear this word of assurance from God’s trustworthy word:

Without the shedding of Blood there is no forgiveness of sins. - Hebrews 9:22
But thanks be to God that we read this in Ephesians 1, In him [Jesus] we have redemption through his blood, the forgiveness of our trespasses according to the riches of his grace. - Ephesians 1:7

Friday, August 26, 2016

When the third child turns one

Dear Isaiah,

In typical third baby fashion, you have been one for over two weeks now and I'm finally sitting down to write you a letter. In fact, I wasn't going to write you one here at all (sorry!) but then I was afraid one day you might look back on your momma's blog (although probably they won't be a thing anymore at that point), and realize your siblings both got letters every year. Then you would feel the angst and paint all the third children discover upon realizing they never got a baby book and their older siblings did.
You have probably realized by now that we might always be late. Unfortunately, you've found your way into a family where things lean full and hectic and mommy and daddy forget most-of-the-things-all-of-the-time. So really, this letter paints a picture of your life as a one-year-old in the Stanley Clan (perpetually running behind). In fact, just yesterday, your daddy picked Caden up a full half-hour late from kindergarten.
You, sweet Zay-Zay (as we've taken to calling you), are a such a joy to our family. On a pretty regular basis your daddy and I look at each other and remark on how we might be in trouble with this one. That wrinkled nose and mischievous grin get us every time. You are funny and silly, and especially obsessed with dogs. In fact, every time you see my phone, you take out your pacifier and pant with your tongue out, a clear indicator that you just want to use the snapchat dog filter. Since your momma is apparently a little too old to actually understand the Snapchat, this is the extent our Snapchat use.
Don't ever doubt how much your older siblings adore you, and how fun to watch the feeling grow more mutual the bigger you get. This is probably due to the fact that you are now less likely to be squashed mercilessly by all-the-love. You are a delight to your big brother and sister, and they fight (constantly) over which one of them can hold you and throw balls with you (one of your favorite pastimes) or feed you your dinner. 
You eat more than your older brother and sister ever did, and we are constantly amazed by your voracious appetite. Although you are quite adamant and selective about what your menu entails, throwing whatever you deem unsatisfactory straight onto the floor.
Since you have a big sister who basically aces all school work and reads on a sixth-grade level in second grade, and a big brother who has overcome heart defects and already had one open-heart surgery with another one looming soon, its a good thing you are so easy-going and fun-loving and able to hold your own in a family of big feelings.
You shared your birthday party with your super-hero big brother, and quickly stole the show with your funny cake-antics and those big brown eyes, which never fail to get comments from cashiers and waitresses. The ladies love you already, not that I can blame them. You love giving your big brothers (the even bigger ones, especially Ashton) high fives and tossing the ball to them.
It is so much fun for me to be your mommy, to watch your personality unfurl and grow with every passing day. Your wrinkly-nose and chubby thighs (I might be able to claim genetic responsibility for both of those attributes - you're welcome) make me smile and laugh and want to nibble you up. Beyond that, though, I can't wait to watch the bigger pieces of you unfold. You are stubborn and I know this trait will cause me many headaches, while also serving you well throughout your life. What I mean is this: I am grateful for every single piece of who you are, because I have learned that all of our greatest strengths are also usually our greatest weaknesses (and vice versa).

I hope and pray that you will embrace who God has made you to be, down to the tiniest freckle and personality quirk. I hope you always know how delightful you are, not just to us but to a Father who loves you deeper and more fully than we ever can. I hope this first year, and every year to come, only grows your roots deeper into the love and acceptance of your heavenly Father. That you might do great things for Him, perhaps, but mostly that you will come to understand that great things don't always mean big things. That sometimes the way up is down. That more than doing things, you are able to always rest into being. That you will breathe in His love every morning and lay down in His peace each night.

We love you to the moon and back our sweet baby Zay-Zay, happy (belated) first birthday!

Wednesday, August 17, 2016

Update on Caden's Heart

I am thankful I remembered the persistent chill in the cardiac ward at CHOA from our stay five years ago, wrapping my sweater around me and attempting to stop my shivering. They prep Caden for his catheter, giving him medicine that makes him loopy: they should call this dizzy medicine, he declares through giggles. We all laugh together. I take videos, and he cries when they wheel him back, not for us but for his Kindle. Before the procedure they take pictures of his heart, and explain in detail the ways they will attempt to buy space in his valve if there is any narrowing. If, however, the valve itself is just too small (they put it in at five days old, after-all), they will only take measurements to gauge how soon he needs surgery. We nod and sign our agreement, trying not to dwell on the side-effects they dutifully describe in detail: possible arrhythmia and need to shock the heart, the stent “slipping” out of place, rejection of foreign material, etc.

They tell us it will take two hours, and we slip downstairs for coffee and breakfast, though my stomach turns and flips at the thought of food. We sit back in matching maroon arm-chairs, I read my book and Adam scans the news and flips channels to the olympics. We talk about how different it feels this time. Five years ago, we were reeling from the news that our son had a broken heart. Every decision felt fast and furious and we stumbled through it all like zombies. This time we had space to pray together, and think carefully about how to prepare Caden and Jayci, how to proceed with the best and most well-laid plans as parents and followers of Jesus.

Sooner than we expect, the nurse peeks her head in and says they are almost done. I guess this means no stent? we ask. She agrees, and we steel ourselves to talk surgery dates.

One thing you don’t necessarily want to hear from the doctor looking at your son’s heart is that they found something unexpected. To begin a conversation with the reassurance that Caden’s persistent shortness of breath is not anxiety but a heart that simply can’t keep up. The doctors tag team an explanation that the pulmonary valve is small, as expected, and will need to be replaced. But also that pressures in his right ventricle are entirely too high, even at rest, because of the combination of both this small pulmonary valve, and significant narrowing of a pulmonary artery (bc of scar tissue from his first surgery). His heart is working so so hard, all the time. They tell us, solemnly that he has always had Shone’s Complex (we have never heard of this, but apparently it just means an underdeveloped left side of the heart), that his mitral valve leaks, and that even his neo-aortic valve (the pulmonary valve they put in his aorta during his Ross-Konno procedure) won’t last forever.

Suddenly we find ourselves reeling again, and they say they will present his case this Monday and set a surgery date. A surgery that won't just be a valve replacement, but will also include a repair of the area narrowed by scar tissue. It’s not an emergency, they assure. But it will be soon.

We nod, Adam asks questions (while I focus on not-crying), and we scurry back to the room when they tell us Caden is waking up. We spend the next forty-five minutes holding Caden down while his entry-site bleeds and his pupils dilate in fear. It is just like his night-terrors, and nothing we can do or say will calm him down. Adam and I lock eyes, and we pray and I cry in helpless frustration. When he finally slips back into sleep, under the watchful eyes of the Berenstain Bears on Sprout, and the frantic beeping machines and flashing lights of the fire drill finally quiet, we sit back in the maroon chairs and exhale.

How will we ever make it through surgery? we ask our nurse. They will keep him sedated, she says.

Will his chest stay open? we ask. I don’t know, she answers: maybe.

I mean, she continues, he will be intubated and heavily sedated, because you don’t want someone you love to remember. To remember any of it, I agree, to dwell on all that pain, to know he breathes through tubes and has a chest splayed wide.

Adam and I remember though, and we will hold his story again. It is harder this time, we agree. Because we don’t just have to be tiny baby Caden’s guardians, but we have to actually parent him and Jayci through their all fears and anxieties right alongside our own. We have to prepare, and explain, and trouble-shoot, and figure out how to not collapse under our own emotional and physical exhaustion all-the-while.

For now, that is all we know: that Caden must stay mostly quiet and still for three days. After that, we still have lots of questions. What limitations will he face before surgery? What timeline are we on for his next open heart surgery (which right now I can scarcely imagine after how hard today was when it was a non-invasive outpatient procedure)? What do they mean that his aortic valve won't last forever? Those are all unknowns, and our hearts squeeze with fear even while Caden’s beats wild and pumps harder than it should.

We remind ourselves that He is held by the very One who made him. That his beautiful amazing heart is never a mistake, and that timing tumbles out exactly as it should. That doesn’t mean we understand, or that we have all the answers to any of our own questions. Instead, we wait in faith and ask for prayer. We promise to do our best to keep you all updated. We ask for prayers in advance, and thank you again for the ways you lift our arms when we are weary. We are grateful.
2 Caveats to this post:
1- I am worried that this sounds over-dramatic, like the heart-experts will feel like we are blowing this all out of proportion. But this is just how it all feels to us as we reel from unexpected news, before we have really talked to our amazing pediatric cardiologist and had things explained in careful ways after a little emotional space. 
2- We don't know what we need right now. Adam and I just prayed over my words, and over our hearts, because we both agree we feel like we need something, we just aren't sure what that is. More community, more space, more faith, more details, less phone calls, more phone calls, rest. We just aren't sure what is best for our hearts, our family, for Caden, for all of us. So mostly right now just pray for clarity for us? To figure out what we need and how to walk towards it. 


Related Posts Plugin for WordPress, Blogger...