I am staring at a bridal portrait of myself – twenty years old, hair and skin made perfect, white dress, sparkling eyes. There is a wedding picture in the next frame. Jared is kissing me on the cheek, boyish hair grazing my temple. These pictures flood my heart with nostalgia, with sentiment. In the same breath, they grip me hard, leave my system a bit shocked. It has been almost eight years since we took those pictures, made those vows. How can so much have happened in so little time? When I think about everything those glowing faces do not know, cannot know about what it is to come, it takes my breath away.
Nine days ago, last Tuesday, Gabriel went into surgery early in the morning. We have shared many of the details of what occurred, what we know, how he’s doing. There is a lot we have not shared, not thoroughly.
Sometimes, there are too many threads in this tapestry of our lives. Sometimes the awareness of how many stories we are living makes my soul bone tired, forces me to choose just one to tell, for now. We can come back to the other later, I tell myself.
Sometimes, it’s just too hard to tell two stories at once when I’m still living them both.
“Was Gabriel’s surgery successful?”
That is the common question, the expected inquiry. Medical procedures can so often be adequately assessed in this way – successful or unsuccessful, perhaps neutral. Gabriel does not tend toward the “so often” path.
Gabriel’s Achilles tendons were severed, legs casted in hopes that the tendons will heal properly, lengthened. He handled anesthesia well, and his pain was manageable with rare exceptions, quickly solved. He has slept and crawled well, and he does not express irritation about the casts. For this, we are grateful beyond measure. We are confident of God’s goodness in this, of His pleasure in answering the prayers of saints who asked Him to provide comfort and joy.
During the surgery, Gabriel’s orthopedist, Dr. Stephenson, hoped to conduct nerve and muscle biopsies, which would provide her with more information about the behavior of Gabriel’s body on the cellular level. She could not get the biopsies, because the muscles and the nerves are not there.
Full stop. That which should be there, inside every body, every leg, every foot, is simply not there.
This is not a small thing, and it is magnified by the fact that there was extra, useless tissue inside Gabriel’s feet and ankles, yet another sign that the instructions given by his genetic code since conception are faulty. Parallel to our confidence in God’s kindness toward us in the past nine days is our confidence that God was there was Gabriel was created, when his genes were formed. We are sure that He was there, and that He did not intervene when mutations occurred.
“It’s like Gabriel is within the spectrum of the color red,” Dr. Stephenson said just after the surgery, “but he’s not quite fuchsia, not quite fire engine. His red doesn’t have a name yet. So, that’s what we’re doing. We’re looking for a name for the color.”
These are not the days of ups and downs; these are the days of intertwine. These are the days of celebration as Gabriel balances on his knees and claps for himself, as he chases his brother around the house. These are the days of a pricked heart when social media reminds me that babies far younger than Gabriel are pulling up, standing, walking. These are the days of pillows under casted legs, the satisfaction and relief of helping a baby too young to speak his needs find comfort. These are the days of thinking back on the moments after the surgery, the moments of no name for the color, and wondering if it will always feel like this, so nebulous, so unsure.
There was another phrase the doctor used while we sat in that room, just before I was whisked away into the recovery area to await a sedated Gabriel’s awakening.
“I think we know at this point that whatever we are looking at is very likely to be progressive.”
“Very likely.” These are new words. Before, it has been “possibly,” it has been “this is similar to CMT, and CMT can progress.” It has not been “very likely” to us until the past nine days.
Before anyone comments with, “it isn’t new to God” or “don’t let those words limit God’s power,” let me just save you some time. We know. We really do know. We are not shaken, nor uncertain of God’s ability. We are in no way less convinced of His power than we were before “very likely” pierced the air. But we are grieving. We have been grieving for a long season, and there is not time to heal, because the news refuses to cease in its onslaught. This surgery confirmed all the more that we are not simply looking at a correction of anatomy, but a DNA-level malfunction from conception.
And He did not intervene.
I used to be one of those people who saw God’s goodness so clearly, even in the midst of pain. It’s harder to see it now, to point it out and claim it with confidence. It is like I’m holding my hand in front of my face, certain that it’s there, but the room is dark, so I can’t actually see it. It has to be there, right? I know it’s there. Sometimes I can almost feel the warmth of its closeness. But I cannot see it.
People approach me often, families at church, friends of friends online. They tell me that our story gives them confidence in Jesus, that we are a picture of suffering well. I say, “thank you, God has been good to us,” because I do not know what else to say, because this is an opportunity to preach to myself. Maybe that is what I am really thanking them for.
We do not know what progressive means, and no one can tell us. There are stories of sibling groups, three out of five sisters with a CMT diagnosis: one still walks, one does not, one won’t by the end of high school. There is the story of our family, a mom and two sons with identical mutations, the two sons both carrying an additional mutation from their dad. Yet one is born into the world and requires no intervention, no months of casts, no surgeries, no trips to Houston where I enter into the hospital and am quite certain by the time I exit that I am no longer her, and who am I now?
These are the days of intertwine. They are the days of no name for the color, of spectrum, of gratitude and grieving.
“We will know more about this as Gabriel shows us,” Dr. Stephenson said.
What this means is, if he is going to walk, we will know when he starts to walk. And, if that occurs, then we will know if walking will be taken from him if one day he wakes up and his legs do not move. We will know if he will lose sensation if he expresses tingling or numbness. We will not know because a test tells us what is coming, because a vial or monitor holds the answer. One day, something will be different. And then we will know.
I cleaned out a bookcase yesterday. I took a volume called, “Let Go and Let God” and put it in the “to sell” pile. Maybe you would rather not know that.
I do not know what it is to embrace the goodness of God in this moment, what it is to rely on Him. So I wake up in the morning, and I turn on songs that offer me better words, words of Scripture and words of the people of God Who have been in this middle place of surety and uncertainty all at once far longer than me. On Holy Days, I light a white candle, I think on the themes of the season. I ask God how I can know Him more in all of this. I ask myself if I actually want to know Him more, if I think He is the type of God I want to know. Something in my soul keeps saying yes, and, perhaps because I do not know what else to do, I say “okay,” and I keep talking to Him, keep asking Him what He is doing and Who He is. I keep reading the Daily Office, even when the passages are about Jesus healing sons, even when I want to slam the gospels shut because their power still lives and my child is still half wrapped in plaster.
I do not think God owes me any answers, about His plan, about what is going inside Gabriel’s body, about why He allowed any of this to happen. I do not think I would like any of the answers He could offer me, nor find them satisfactory. I think that the only answers with the power to provide any comfort are the words telling me Who He is. So those are the questions I’m asking. Those are the answers I repeat to myself, singing to Gabriel in the rocking chair, a made up tune, “Our God is kind, our God is kind, our God is kind.” I sing it over and over and over again. I ask God to convince me of it as I rock, as Gabriel’s casts scrape my arm. There is so little else I know how to do right now, so I am doing this.
There is no name for the color, but there is the white of the Holy Day candle. There is no name for the color, but there is the blue of the plaster casts draped across me as I sing the truth over us.There is no name for the color, but there is the name the Lord gave us for our son, “Gabriel, God is my strength.” There is no name for the color, but there is the name of Jesus, tumbling out of my mouth in a breath, a prayer all its own, because I have no other words.
This is what there is; this is where I am. And He tells me that He is above, before, within, over it all. So I keep talking to Him, keep singing and lighting the candles. I wipe off the blue casts and check for swollen toes. I ask Him to be near, and He says He will be. And it will be enough.