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. 

Tuesday, August 16, 2016

From the Precipice

I have a friend, internet-turned-real-life, who wrote one time about the ministry of funfetti. It was (and is) one of my favorite things I’ve ever read via the internet, and I knew I would love Danielle from the minute I read it (stalker-alert). Because my life is a little (understatement) out-of-the-ordinary, it’s a rare gift for me to encounter someone that makes me feel less alone. Danielle is one of those gifts. She also makes me wish I paid closer attention to my writing teachers, because girlfriend can write, but that’s besides the point. Anyways, all that to say when I wanted to write something to celebrate the release of her amazing book, Assimilate or Go Home, I had many ideas of unrecognized ministries in my life that I wanted to write about. The ministry of the always-open-door; the ministry of the messy-minivan-as-taxi-service; the ministry of extra spaghetti and always-stocked ramen noodles; the ministry of sour patch kids; the ministry of lowering our expectations.

But when I take a minute to stop and think about where I am today, and where I will be tomorrow (the ministry of taking a minute), I know I actually need to talk about the precipice where I find myself dangling.
I had reached a breaking point, where I no longer believed I could save anybody and I didn’t know if God could either.

Danielle’s words give voice to the things I fear, I train my eyes over them like fingering a rosary, clutching hope that I will survive finding myself at the very end of my abilities.

Five years ago, when Caden had open heart surgery I sat in the same chairs we will sit in tomorrow, and I felt (mostly) peace at surrendering my son to a God I knew to be good. But after five years lived in the thick of a world more broken than I could have imagined, “good” seems a more fluid and inscrutable concept.

The problem is not that I no longer believe in God’s goodness, but that I’m not quite as sure what good actually means. My definitions of love and success and goodness have been flipped upside down as I live on the margins and walk alongside the broken.

The love has quieted me, confused me, and dragged me into places I never could have foreseen. It cannot be tamed, and that is turning out to be very inconvenient indeed.
There is a chapter near the middle of Assimilate or Go Home and I read it and re-read it, tightness blooming in my chest. Danielle says she's starting to believe that his eye is on the sparrow, in the beach strewn with dead birds and a landscape rife with loss and pain. She asserts that choosing life and messy relationships despite pain is a way to give a finger to the darkness, and I feel a kernel of hope inside that perhaps this is true.

All of us are slowly making our way to God, our hearts already broken by the time we arrive, searching for the only one who truly sees it all, the one who will never look away, the one who counts each and every fallen sparrow.

I imagine tomorrow morning, when we will hand our son over to skilled doctors and then sit and wait, anxious and skittish, for them to bring us back to him. I wonder how they can balloon his heart valve with the marvels of modern medical technology, wonder how too I might balloon my own heart, gently and firmly expanding its capacity for love and sorrow and joy all at once.

I am like the Israelites, gathering manna, just enough for today. Reminded afresh that I cannot save myself or my son, let alone the world. Instead I gather and nourish, quietly and not more than I need.

And so, rather than save the world, we carve a small space in it where the Kinngdom might come with kinship and grace and peace instead of fear. We inhabit this space, and then invite our neighbors in, even as we realize that they also invite us into their own spaces where the Lord is already present. Because when I stop trying to save the world, I remember that we do not bring Jesus to the margins but meet him there. We have no answers, but we do have compassion and lament and suffering with.

The world is so much worse than we would like to believe, and God is so much wilder than we are being taught. We can study the kingdom of God, but we can never contain or subdue it. Reading about it will never equal the experience of it. That we must discover for ourselves, and we will find it where God always said it would be: on the margins, in the upside-down kingdom.
*You guys, I don't gush about books lightly, but I seriously could have highlighted every passage in this gorgeous and somehow-still-completely-relatable book. Danielle says important beautiful things that point us to Jesus and his Kingdom and I want you all to go get it immediately. Seriously.

Monday, August 8, 2016

Five Years Ago Today

Five years ago today we woke early, shaky. Matt Hammitt plays quiet as we pray together and circle the parking deck, easily finding an early morning space. My sister brings me a plastic donut pillow to sit on, because I birthed Caden only five days ago and nine hours in a plastic chair don’t feel exactly comfortable at this point post-delivery. Every three hours, I wheel my electric breast pump to a small room and hope for no news while I’m gone, crying as my uterus contracts gently and I bottle each tiny drop of my milk to give the doctors. Emptying myself, honestly uncertain if he will ever even get to taste my meager offerings.

Each time the phone rings for us, my heart drops somewhere deep in my stomach. I watch Adam scramble up to answer, and don’t exhale until he relays the message: they got him on bypass. his chest is open. things are going as expected. Nothing rings exactly hopeful, but nothing seems catastrophic either, and so we rest and pray and distract ourselves and cry a little in waves that crash over the longest day of our lives.

Somehow we made it though that day, and all 1825 days we have been given with our Caden since then. We laugh when he tantrums, or alternately cry in frustration when he refuses to listen, or when we explain to his babysitter that he will always always say he’s starving when he’s actually desperately tired. We watch him sweat and cry and laugh and hug and play basketball, and every single minute I fall more in love with who God has created my sweet boy to be.
A few weeks ago, Caden and Jayci throw a football back and forth in my parent's lawn while Isaiah and I sweat and watch from a blanket in the ridiculously-plush grass. Caden stops suddenly, his hand over his chest: my heart hurts mommy, he tells me: it’s beating too too fast. Internally I panic, although outwardly I just quietly bring him inside to air-conditioning and make him sip water while laying on the sofa. Typically, we don’t talk about Caden’s heart, don’t ask him how it feels, don’t worry about it much during the course of our day-to-day lives. This is why, of course, his words drive me to panic: I know they are how he feels, and not a seed of worry we have planted by asking him constantly how his heart is feeling.

That night, I agree to sleep in Caden’s bed, ducking my head to climb in next to him on his bottom bunk. We aren’t the family-bed type (apparently), and I’ve actually never done this before. I lay on my side, facing him, with my knees curled up. His position mirrors mine, and he curls himself neatly into the space where my womb carried him five years ago. I kiss the scar on his forehead while he chatters about how he will probably roll over on top of me, but will try not to, but can’t really control when he sleeps, but it's ok because I can just move him right back. I finally shush him gently and say bedtime prayers, his heart beating its unique rhythm against me. Before long, his breath settles into a slow even rhythm and I try not to wake him back up with my tossing and turning. Worry beats wild in my own chest, relentlessly chasing away sleep. Finally, I climb awkwardly over his protective side-rail, stepping on legos and cursing mildly under my breath before slipping between the still-cool sheets next to Adam.

Now, I ask Caden all the time about his heart. He waves me off, normally, insisting he is fine. Though lately more and more frequently we notice him struggling to catch his breath. We issue instructions to friends with trampolines not to let him bounce, we bring him water bottles and force sips, and schedule a meeting with the cardiologist. After appointments and listening and more than a little chest-tightening worry, we have scheduled him for a heart catheter in just over a week. He just turned five years old, and he will have his first heart-related procedure a few days after the fifth anniversary of his open heart surgery. They will mostly take a better look, find out what really beats and flows beneath the surface of his still-tiny chest. Depending on how things look once they are inside (via catheter, not open-heart), they will either try and balloon the pulmonary valve to buy time before his next surgery, or they will tell us that he needs surgery sooner-rather-than-later.

Five years of normal life have made it quite easy to forget. And this upcoming catheter procedure is non-invasive, out-patient even. But even still, it reminds us that for Caden, heart surgery looms as not possibility but eventuality. And so I sleep in his bed, and occasionally he slips into ours, or pads in quietly after midnight to startle me awake and ask me to come check on him in five more minutes. He smothers his brother with too-much love, builds all the lego sets, begs to play basketball, and we decide to wait another year for him to start kindergarten.

These days, I find myself living in one of two places: fear or avoidance. And yet when Caden was in the hospital for his first surgery, we learned to inhabit the elusive space of awareness with more peace than fear. Where we knew and accepted the risks, facing head on all the things we might lose, and choosing to trust anyways. This faith forged by hardship leans different than a stubborn refusal to accept that bad things might happen. Not burying our head-in-the-sand, but choosing life not unafraid but afraid and moving forward anyways. This is how I want to live, of course, but I forget and I listen to the whispers and lies of an enemy who quietly whispers “did God really say?” And so things get dark and I feel afraid, and I forget the Lord’s goodness to remain by our side during the darkest and scariest hours of our lives.

My fierce love and hopes for my boy grow stronger and deeper with each passing day and year. Five years ago, handing my son over the surgeons was the hardest thing I’ve ever done, and I am afraid that next time will only be harder. Because that day Caden was a tiny stranger who I loved completely and fully, but who couldnt question us or cry for us or explain how much it all hurt. And next week, when he goes to the cath lab (and next time he has open heart surgery), he is not only my beloved son, but someone who I know and love intimately and fully in ways that swell and grow and change every single day.
And so I’ll just go ahead and admit that I’m scared. Terrified really. Of a mostly non-invasive, nearly routine outpatient surgery. But it's a reminder of the truth I mostly try to forget: Scripture promises us a lot of things, but tomorrow is not one of them. If I fool myself into believing I can secure a thousand more tomorrows for my kids, then I will chase that security as the end goal. But when I remember that I cannot pick back up the things I’ve laid at Jesus’s feet, I recognize Caden’s life as a gift that doesn’t actually belong to me. We are better for having him in our lives, in our family, in our neighborhood. The kids love him, the boys come to his basketball games and birthday parties, and he widens our ideas of ourselves and of faith every single day. And so even knowing he is safe in our Father’s loving arms, I nevertheless find it harder to relinquish him there the older we both get. The golden calf of safety calls strong and loud, and I occasionally lose sight of the beautiful life that can only be lived in surrender.

Yesterday, we went to Target (as usual), and we parked “under our bottoms” (which is what Caden still calls the underground parking deck). I told the kids we should take the stairs, and Caden looked at me earnestly and said he couldnt because it made him feel too tired. I agree and smash the elevator button quickly, uncertain if he knows enough to use his heart-problems to his advantage, or if his newfound shortness of breath is simply a dire warning sign much like the gray clouds gathering above the cheery red bullseye above us. I wonder sometimes if these last five years in our neighborhood and family have deepened my faith or shaken it. If the questions and hurts have stretched and strengthened me, or finally brought me to a place of brokenness. I am not sure I know what to do with a God who said yes to Caden’s successful heart surgery last time, but won’t guarantee a positive outcome again. This feels scary to put in words, like perhaps I will be shaken by a sudden bolt of lightening or stricken with terrible plagues. How can I doubt the God who gave us back our son, nine hours after we handed him over, with a heart that was healed and whole yet beating wild beneath the plastic over his gaping wound? But I know I am gripping my Caden with tightened fists, doing my best to follow God even when I have more questions than answers. Doubting His goodness in a neighborhood where even yesterday a nine year old stole a car, and knocks never stop peppering from kids without school supplies or uniforms or hope.

But right in the middle of my darkest doubts and greatest fears is perhaps exactly where I will stumble back into my faith.  And perhaps there I will discover a faith never really lost, just expanded and widened, with more space for the questions and tears. Where fears don't mean I am not trusting enough, but where the surrender of things most precious to me yield a rich harvest of grace and joy. And so I loosen my grip on my middle boy; knowing that he will, indeed, change the world. With his special heart, his fierce love, and his bravery. With his wicked sense of humor, his inclusive joy, and his courage even when he's feeling extra shy. With all the thousands of quirks that make him special, and all the things we now know we will painfully and joyfully surrender to the God who made him and loves him with a fierce and unconditional love we cannot even fathom. The God who feels the exact same way about each neighborhood kiddos who knocks on our door and pushes Caden on the tire swing, and even the ones who steal cars and crash them at the corner store. We relinquish our grip on all of them, remembering the ways that open hands always allow us to receive far more than we give up.
We pray for healing, for freedom, for peace instead of fear. We pray for steady hands and skilled doctors, for wisdom for us in explaining it all to Caden and his big sister (who tends, like her mother, towards worry). We pray for the boys who steal cars and all the ones who have and who will steal our hearts and break them. We pray for favorable outcomes for Caden next week, and for thousands more tomorrows, accepting each and every one of them as a priceless gift. 

Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
(Matt Redman)


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