Monday, October 31, 2016

When the Bottom Drops Out

Earlier this week, I was talking with a sweet friend last week about things suddenly going very wrong. I recounted for her the moment five years ago when I was wobbling from the bathroom into a wheelchair, my legs still numb from the epidural they gave me during Caden's birth. Just as I gently and triumphantly lowered myself into the seat, Adam walked in with tear stained cheeks and a look in his eyes that I immediately and instinctively recognized as the bottom dropping out.

It's his heart, he said.

We agreed that when you have experienced these moments where the bottom drops out, the problem becomes that now you know it can. No longer can you mistake the ground below you as firm or unyielding to sudden catastrophe.

Our alarms go off at 4:30 Tuesday morning, and we leave the house just after 5am. By 7:30am, they are wheeling Caden away from us down the hallway, while my hands tremble and I grip Adam’s arm. We blow out a breath, agreeing we actually feel a little better than we expected.

And yet, we sit in the same seats we sat in five years ago, waiting for the bottom to drop out.

Friends bring us food, people text me. They ask questions and offer prayer. We bow under the weight of knowing and not-knowing all at once. Over carrying too many stories of when things went wrong, and clutching too tightly the casual assurance of the doctor who will cut through and sew up our son’s heart.

I find my faith, of course, on neither end of the spectrum. Not in talking myself out of anxiety, convincing myself it's “no big deal” because we have been through this already, but worse. I also do not find faith, however, in the gripping fear, in my inability and/or stubborn refusal to surrender my son.

We sit in not-cushioned-enough chairs for six hours before they take us to go see Caden, whispering and tweeting updates as we get them. We shake with relief when the doctor tells us his chest is closed, everything went well. He says the surgery was much easier than last time, that he jammed an adult-sized valve in his little heart (his words, not ours), explaining that Caden might not even need another open-heart surgery (he will need a new valve, he is just hopeful that his next replacement might be by catheter rather than surgery). Everything is smooth sailing, basically. We are skeptical, seeing as our only reference for open-heart-surgery is Caden’s last one, when we found ourself on a roller coaster of a recovery that was anything but certain.

It feels like we might have PTSD. The first notes of the beeping song of monitors only barely begin when my heart beat quickens and my nose twitches with the smell of antibacterial soap and the undulating lines marking Caden’s life that pulse alongside bubbling chest tubes.

I can't stop crying upon seeing Caden, big tears roll down my cheese while quiet sobs shake my shoulders. His perfect lashes lay dark against his pale skin and a tube is snaked down his throat so he can breathe. In the next bedspace, alarms keep going off and I am undone with each one as I read all Caden’s numbers in frantic succession, trying to make sure the alarm isn't his. With near alarming speed, he wakes up and panics to find the breathing tube down his throat. We reassure him the best we can while gulping back our own tears. Sooner than we imagined, they pull it out and his tiny raspy cry and the fear in his eyes is enough to unravel me completely.

Within twenty-four hours, he is oxygen free. He cries quietly with pain and they pull out his catheter and chest tubes, and quite honestly I can scarcely believe all he has been through and overcome in such a short amount of time. I am shaky with adrenaline and fear and relief and exhaustion, and I stroke his forehead and pray while Bethel music plays over him and Adam sneaks in a few hours of sleep.

After forty-eight hours, and more middle of the night needle-sticks and temper tantrums than we care to recall, we are heading home. It seems like a marvel of modern medicine, even daresay a miracle. I credit the prayers of our community of friends and strangers. Adam and I lock eyes, shocked by the outcome and our shaky faith alike, while the nurses tell us how even they are surprised by his quick recovery. I joke about how they probably drew straws to see who got stuck with Caden since he refuses to answer any of their questions, and develops a quick habit of attempting to kick anyone who tries to give him medicine.

Once we settle into our thoroughly disinfected house and snuggle Caden into his own bed, where he immediately falls into deep sleep, we collapse on the couch with our fingers entwined. I let out a slow breath, unsure how long I have been holding it.

Literally until we actually left I was expected something to go wrong, I tell Adam. And then, I was sure we would get in a car accident on the way home. 

Me too, he admits.

We sit quietly for a few minutes, and then talk about how we can’t keep living waiting for the bottom to drop out. We can accept good gifts from a good God without the anxiety and fear that they will be lost down a gaping hole in the very next breath. Because that’s the thing about the bottom dropping out, and about knowing it can: we can actually accept it as a gift. As an invitation into a life built on a deeper foundation. An invitation to live without anxiously worrying about when catastrophe might strike again, but to live instead resting our feet on the only thing that can never drop out from under us. An invitation to live firmly rooted on the solid rock of Christ, so that no matter our circumstances and the outcome of heart surgery, we remain unshaken (which is different than without questions, I'm learning).

This is easier said than done, of course. We are at home, and still I wait for the bottom to drop out. For something to go wrong (infection, bleeding, fluid on the lungs, every risk they warned us about): surely it can’t just be this easy? Living without constant fear, while acknowledging the solid rock beneath it all, doesn’t come easily for me, riddled as I am with doubts and brokenness. But it is nevertheless the only way to make it through this busted-up world. To understand that the bottom can, and probably will, drop out. That elections might not turn out the way we hope. That churches and friends and family might disappoint us. That our boys might all end up in prison and another sixteen year old will come over to tell us she's pregnant. That sickness and even death may come knocking at our door. But with our feet planted firmly on the solid rock that will never ever drop out, we can face whatever comes with strength and a steady peace that the world will never understand and nothing can ever take away. 

Monday, October 24, 2016

Thin Places

The thing about children's hospitals and neighborhoods on the margins is that they are places where it becomes impossible to pretend all is right with the world. When gunshots become your evening soundtrack alongside the katydids of southern summer. When you silently hold your husband's hand while you hold open the elevator door for a breathtaking girl whose smooth head is covered with a delicate silk wrap, and she drags her iv pole down the hallway with a bright smile pasted across her pale face. When we arrive for our first meeting with Caden's surgeon, the parking deck is full, there are too many sick kids. We park across the street at the cancer center, and quietly watch a man dry heave into a bag on the elevator, while his wife dabs his neck with ice and braces his arm and we grasp hands and gasp quietly at the fragility of it all.

The air here feels thin, the curtain drawn back on all our illusions of safety and longevity. Again we remember that we are actually but a breath. And our sons and daughters too, as fleeting as the green grass already turning brown, the bright green leaves gasping last breaths in brilliant red and yellow.

God feels unbearably close, we cover our face at his brilliance. At the awful beauty and unbearable pain, the joy and sorrow entwined, inextricable.

I have no good answers for tear-stained parents and battle weary grandmothers. Neither the ones on our block nor the ones sitting alongside the bed next to Caden. I wonder how the nurses serve and care with such gentle joy and peace, how they clock-in and out to face suffering in twelve-hour increments again and again. I wonder why our boys wake up optimistic and early, to open their Bibles with Adam and read promises before school of the God who says over and over "do not fear" even though by all accounts there is always oh-so-much to fear.

In these thin places we find ourselves stripped of the things we cling to. Of wealth and health, of American dreams and prayers always answered in the affirmative. Of hashtag blessed, and of election woes. It all fades like our lives and we watch in awe the space where curtains draw back to offer us a glimpse of the one who holds us close through it all. We surrender and hope and pray and grasp faith lightly. We want more Jesus, we want freedom for our boys and healing for our son. We want all the things without any certainty we will get any of them.

We tell ourselves this time is less serious, and certainly this is true. We are not blindsided by emergency, by the most complex surgery they can do on a heart that will surely not survive without it. We have been there, walked through that deep valley before. But the fact remains that our son's chest will be cracked open, his heart won't beat while they do the repair. The doctor explains that cutting through the scar tissue from that last surgery is actually the hardest part. Probably for us too. Our own scars and fears and memories loom, both to shake us and comfort us, for I cannot help but remember the fearful nearness of my savior. The holiness of the space by Caden's bed, the ways we learned about the most important things in all the hardest ways. About surrender and faith and letting go of our illusions that the world can ever be our true home. Come Lord Jesus we cried, and so I murmur those same words tonight.

Over the past few days, some of the matriarchs of our neighborhood have come by to pray over Caden. Without fail, they kiss my cheek and whisper assurance into my ear: God's got him, He's got this, everything will be fine. What kind of faith is this? I wonder, as I struggle to gain my own footing on a shaky faith riddled through with fear. They have walked through valleys and more valleys and known hunger and fear, and yet they believe. They trust in His goodness with a faith discovered in the thinnest places.

And so tonight, on the eve of Caden's second open heart surgery, I will ask God to help me open my hands, recognizing that my tight grip on my son will change not one single thing about the outcome of his surgery. The best I can hope for is that in very act of letting go, we will enter into the thin place with a readiness to meet our Savior and surrender our son in order to find our faith anew.

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,


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