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.
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.
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.
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