The summer after Jared and I were married, we moved to Ireland for two months. We lived with a missionary family who had been there for thirty years and whom I had stayed with two years prior. We thought God may be leading us to Europe and we wanted real life missionary experience. So, we quit our jobs, put our stuff in storage, and got on a plane. I guess if the crazy isn’t happening to us, we’re making it happen.
I have the clearest memory of standing in the kitchen with our hostess one day, soaking up her wisdom over uncountable mugs of coffee and tea. I told her that I didn’t want to forget anything she had imparted to me, that I wished it were possible to just memorize everything she was saying. She smiled and told me that if God is kind enough to allow us to hear wisdom in the first place, He’ll be kind enough to call it to mind when we need it. Of course, I thought, that’s our God. The tenderness of His character cemented itself in my heart in a new way that day.
When we lived in Swiss Tower during Jared’s seminary days, we crammed a keyboard and amp into our office. I fumbled through teaching some piano lessons to neighbors’ children, and I loved to rest my laptop on the top of the keyboard and look up chord charts to my favorite songs so I could play and sing them. I don’t remember when, but sometime during that season, I fell in love with the song Burn Us Up by Shane & Shane. It tells the story of Shadrach, Meschach and Abednego (Daniel 3), Hebrew men who refused to bow down to Nebuchadnezzar’s idol, even under threat of death. Moments before they were to be cast into a fiery furnace, they professed the ability of their God to rescue. They said to Nebuchadnezzar, “…our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king. But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up.” They are thrown into the furnace, God rescues them, and through their faithfulness and God’s power, Nebuchadnezzar blesses their God. I love this story. I love God’s display of omnipotence, I love that the men are rescued, I love that hearts change. But I think what I love most of all is the same thing that Shane & Shane saw fit to draw out – “but if not.” Or, as the song says, “You are able to deliver from the fire of affliction…but even if You don’t, we will burn.” I sang this song over and over and over again in that tiny space of student housing. I marveled that I was held in the hands of the same God that rescued these men from incredible earthly opposition. I wanted their brand of unbreakable faith.
Gabriel’s 20 week in-utero appointment started an additional track in my life, one running alongside the others already barreling along. The clubfoot diagnosis alone introduced a new dynamic to our family, a different vein of motherhood with which I was previously unfamiliar. New terms, new doctors, new schedules, new necessities. It was a lot to take in and my heart took a long time to catch up, to deal with reality. That is, if it has yet. Some days I’m still not sure.
Seven sets of casts and a surgery later, we were headed for the next phase of treatment – braces with boots and a bar connecting Gabriel’s feet. I battled raging anxiety in the weeks leading up to surgery, but the day of, God brought about incredible peace. Hundreds of friends were praying, many texting or emailing to share Scripture, and we felt carried throughout that harsh early morning and the surgery.
And then our doctor came in.
She told us that the procedure went well, that Gabriel was being casted and that they had molded him for braces. Then she told us that she thought we were dealing with more than just clubfoot, that the tiny flickers of reflex we had seen thus far weren’t enough, weren’t normal. And then the nurse came to the door because Gabriel had woken up much earlier than they thought he would and was screaming. I bolted from the room and spent what felt like an eternity trying to help him get comfortable enough to nurse, only to sit holding my writhing child while the nurses searched for the anesthesiologist so she could put in an order for pain medicine to calm him enough to fitfully sleep and attempt to eat. By the time we were back to Jared, I had practically forgotten about the conversation with the doctor. Jared had to remind me, and then shared the rest of what she had said. Potential for braces much longer than we thought, maybe forever. Maybe he would never walk normally. Maybe the hundreds of times we had heard, “he won’t remember any of this” had suddenly come untrue.
Yesterday, we traveled to Gabriel’s first appointment since surgery. I slept well the night before it, something I attribute entirely to precious friends waking in the midnight hours to pray on our behalf, to stand in the gap for us. The day felt so heavy but so peaceful as my Mom and I traveled to the appointment, well aware that if Gabriel’s reflex didn’t present, it was unlikely that clubfoot treatment was the only course of action his little body would require.
The reflex did not present.
Sometimes I feel like I can watch myself as though I am someone else, like I’m watching my life unfold before my own eyes on television, or in a dream. This happens often in moments of shock, and it happened yesterday, though shock may not be the perfect word for that specific experience, because I didn’t really expect the reflex to present. I knew God could do whatever He wanted, but I also knew, through prayer and the wisdom of others and God calling to mind the lyrics to Burn Us Up, just like my dear missionary friend said He would, that He was convicting me, as Gabriel’s mother, to utter nothing other than, “Thy will be done.” I couldn’t pray anything else. I was so thankful that hundreds of others were praying for Gabriel’s physical healing, but the Spirit had me locked into a place of desiring acceptance only. That may sound strange or radical or unkind of God. It wasn’t. It was the kindest place I could be, perhaps the closest to God’s heart I’ve ever felt.
And perhaps it was a coping mechanism, an extension of that kindness, that when the doctor began to explain what she thought Gabriel could be facing, what the next many, many years could look like, I felt like I was floating outside of my body, like I could see myself sitting on that rubbery hospital table, inhaling the clinical smells of Sharpie and gauze and sweat, holding my exhausted, poked and prodded cherub of a baby, while I tried so hard to stay alert, to hear every word, to keep from shutting down. This out of body state happened when I got the phone call that I had cancer, when we heard that Owen may be in danger in the womb, when I was told I may have Multiple Sclerosis or Lupus, when we first learned Gabriel had clubfoot. In my memories of those moments, I am not looking at the doctors, I am looking at myself, watching a new reality unfold. It is not lost on me that not all of the possible predictions in these instances came true. But some did. And there is a new one that we are likely adding to the list.
The doctor explained that her “educated guess” is that Gabriel has Atypical Clubfoot and Focal Anterior Horn Cell Disorder, a little known issue that affects the same area of the spine where polio strikes. This is what she believes causes Gabriel to have very little movement in his feet and toes, as well as low muscle tone below the knees.
We can’t know for sure right now, she told us. He’s too small for an MRI and it’s too early for him to undergo anesthesia again to conduct one. Maybe we can do an MRI at one year, but he may be too small even still. This is a tiny area we need to see, she explained, and so what’s inside it is even smaller. She told us that Gabriel is likely to require braces for much longer than we thought, much longer than just sleeping with the bar attached until he is 3 or 4. He will probably need braces until he is finished growing. His feet may appear as though they are slapping the ground, or he may compensate by picking up his feet entirely, like marching. In order to help his gait appear normal, he may choose to wear braces throughout adulthood.
We are asking God what it looks like to cope right now. We are exhausted as Gabriel is trying to adjust to his braces, sore, tender, uncomfortable, and restless, and as we are trying to adjust to a new reality, to more wait and weight. We had to drive back to Houston today because Gabriel’s first pair of orthotics didn’t fit properly. I put him to bed just over an hour ago and he has already woken twice, when he typically wouldn’t wake for 10 hours. To put it succinctly, our van is out of gas and we are too.
And yet, in God’s infinite goodness, in His wisdom and kindness and peacefulness and compassion, we are not without hope. We are overwhelmed by the hands of Christ extended toward us through friends and family who encourage and help and offer and say, “I’m so sorry. This is so hard.” It is. It’s so hard. I don’t want to hear much of anything else right now. This is hard. God is good. That is the Christian life. I want straight up, honest truth because that’s where the life is, that’s where the pressed in place is, that’s where God is.
Oh, there is so much more I could say. There is a book inside me already with all that God has done in just these few short months since Gabriel was born. Maybe He will have me write it, maybe He will have me treasure it up in my heart for the time being. I don’t know. But I know, somehow, that He is good. I still know that to the core. And maybe this is circular logic, but right now I know that He is good because He is allowing me to believe that He is good. If that makes sense to just one of you, then I’m willing to risk the folly of how it sounds. I am in the thin place, the place where honesty and grace abound and where maybe what I have to say won’t make anyone feel warm and fuzzy but I think it will sound like Jesus, because He’s all I know to cling to. To whom shall I go if not with Him?
I’m so thankful for each and every one of you who takes the time to read my thoughts spewed out and spilling over. You lighten the load we bear just by seeking to understand it. Join us, please, in trusting that in all our sorrows, Jesus is better. May He continually bring our hearts to the place where our mouths can say, “You are able to deliver…but even if you don’t” we will rejoice, we will believe, we will trust.