Last weekend I went to Allume, and I have so much to say about it. I loved that I finally got to be with some online friends, the ones who actually feel like childhood friends. I’m not sure I ever felt more like myself with a bunch of women. It wasn’t a cheesy conference, and it wasn’t shallow. It was a place of confession and prayer, of worship and of some of the best laughs I’ve had in a while. There’s more, but the thing I keep thinking about is how multi-generational it was and how it seems that every single woman over the age of 45 seemed to come to my side with a word of clarity and admonition about my writing. The most intense encouragement came from multiple older women there, and these women are ones I so highly esteem that I would consider not writing another word if they said I shouldn’t
But each encouraged me to go deeper. Keep laying it out. Keep telling my story that is so different and yet somehow so the same. These were the exact women that had to speak these things to me, and I took them seriously.
So I am home now, back in the whirlwind of mothering 4 boys at Halloween time, and I am facing something that I would like to never type. Never in all my days do I want to tell this story, but the truth is that the gospel is alive in me. My story (and yours, too) is one where an active gospel of Christ Jesus is at work, and so taking heed what the Spirit is saying to me, I will tell our current story to you here.
Before I begin, I call this an offering to God, to the God that whispers within you, and I can type this with boldness: watch me. God will prove Himself to you through me, just as He will prove Himself to me through you. Only let’s help each other watch. Let’s stop a minute and listen.
On Tuesday morning we woke early to get the boys ready for school and then to get Titus and me on the road for the 3.5 hour drive to Little Rock for his yearly MRI appointment. Titus has chiari malformation 1, which can affect his appetite and ability to gain weight if it worsens, so honestly we were hoping to blame his weight loss on the chiari, have a little brain surgery, bada bing, bada boom – healed.
Seth had already taken the boys to school. It had been a headless-chicken sort of morning, and well after the sun had risen, it was still dark outside. It looked like a giant was emptying a water tower over our house, buckets of rain sloshing down, so I grabbed the keys and ran out to the van to bring it a little closer to the garage. As I was pulling closer, I saw Titus in his little diaper, running out the door after me with sheer panic in his face. He stopped at the edge of the garage with his arms outstretched, and he was screaming and shaking in terror, “Mama! Mama!”
I knew right away that he thought I was leaving without him, so I slammed the van into park and ran through the rain, yelling “I will never leave you, Titus! I will never leave you!” I scooped him up and nearly stripped my own shirt off to have him closer. “I will never leave you. I will never leave you.” Down to a repeated whisper, rocking, “I will never leave you.”
And the sky could have split open and rolled out and down its own rocking arm. Christ had his lips at present with me. My soul was suddenly more real than garage. I heard the voice of God.
“Do you hear me? I will never leave you.”
I was holding a weeping, relieved baby who had gone limp in my arms, and I felt like going knee-to-concrete down, but we were running late, so I had to leave in a rainy hurry, knowing the God of the universe had just clearly spoken to me. Then of course I wanted to call about 12 people, but my cell phone wouldn’t work. Instead, I realized I had many messages. A few of them were from the Women’s Clinic, and they indicated that “they had to discuss some results with me.” It wasn’t cool, because, with no phone to make a call, I just had to sit on the news. I had to pray because I couldn’t call, but His truth continued to echo the calm, and it echoed straight into Arkansas Children’s Hospital, where two doctors walked in to meet Titus before he was put under.
Right away they noticed that his head has not developed properly. The MRI showed very little change from last year, so the chiari malformation is fine, but the MRI did confirm that he needs to see a craniofacial specialist. When they called to give me the results, they said something about how his head would not give room to the sides of his brain, so they suspect that his chiari is more likely to get worse with time. His face has remained that of a much smaller child while his head has grown in an unusual way. I don’t know what it means, and I’m not so sure they know either.
Nothing we learned seems to have anything to do with how he’s lost weight. Last week I did tell you here that he had gained the weight back, and I am still encouraged by that, but as of now, he’s back down. In any case, he isn’t growing. Our amazing pediatrician (and dear friend) has referred him to MAYO clinic now, so please do pray that they’ll see him and that the timing of that would be perfect. We’re hoping to find someone capable of seeing Titus as a whole child – not just as a digestive system, not just as a skull.
I have to say it like matters of fact, because I can’t take it, but I’m not sure I believe in matters of fact. Spirit is the realest part, and I don’t know how matter or time or space or brain or syndrome applies in the Spirit. I’m torn up, but I know for absolute certain that He will never leave me.
Watch me, I said. Watch me with a broken heart. Watch me come to know the Healer. Watch me take off my shoes. Watch me climb the mountain, unchanging love. Watch me. We’re running together, you and I. Cloud of witness, pick us up when we hit the side of the road. Name of Jesus on us all.
Thank you for praying for my baby. Please pray, too, for our faith.