Last year, around this time (which is something it seems I am constantly saying these days), I started having nightmares. This wasn’t shocking to me, as nightmares have been a consistent form of stress response and, I believe, spiritual attack in my life for over a decade. We were in the midst of Gabriel’s serial casting, surgery, braces, bar; we were just learning that the condition was more serious than “just” clubfoot. I had recently discovered his clasped thumb as I played with him on my bed, a moment I’ll never forget. My brain changed as I sat on that bed, planting a thought I war with constantly now, “what’s the next bad thing that will happen?”
On the heels of that question burrowing into my mind, the dreams began. Though similar to seasons past in their intentional torment, these dreams were different, harrowing in a way I couldn’t shake, specific in their revelation of my fears. I was dreaming that Owen was suffering. He was vulnerable, harmed, in need, and I hadn’t been there to protect him. One in particular consumed me the following day. “Bad things were happening to Owen,” I told my counselor, a few friends, Jared. “I know why I’m dreaming this. It’s because I think of him as the untouched one. He’s the one left.” My mind was in a cycle of waiting for the next shoe to drop, and, sadistically, thought it “should” drop on Owen.
When the genetic results came for Gabe, “two mutations in the AARS gene…both come from you, Mom,” we knew immediately that Owen needed to be tested. It was a simple blood draw, he handled it so well, never asked why and I never told him. The sample was sent off to a lab on the east coast and, because there were so many things to focus on with Gabriel, not to mention the “normal’ busyness of life with two young children, we were not consumed by the waiting. Perhaps, really, that’s because waiting has become a constant part of our norm.
Yesterday, we had Gabriel’s first genetics appointment. We met with an intern, a genetic counselor and a geneticist, in a room just like the rooms where Gabe has been casted, where we’ve heard news that changed our lives, altered our paradigms entirely. If I’m being completely honest, I have started to hate those rooms. They hold hope and knowledge, yes, but they hold a great deal of pain, past, present, and I assume (rightly or wrongly) future as well.
We did not know what the appointment would entail. Was there more information on Gabriel to share? Next steps? Decisions to be made? Did the geneticist agree with how the neurologists interpreted the results? Speaking of results, were Owen’s back?
Yes, they were back. Yes, Owen has both of the mutations in the AARS gene.
Owen. The untouched one.
There was a 50/50 chance for each son that he would receive the copy of my DNA with the mutations. A 50/50 chance. They both have the mutations. As the geneticist said to me yesterday, “chance has no memory.”
No, I suppose it doesn’t. But this is where belief, where faith and hope and sovereignty get complicated and tricky, where they leap off of the textbook page, fully dimensional in their definitions, and I so badly want to go back to the days when I read them in black and white, studied, memorized, said, “I believe that” and moved on with my life. It may be very well true that chance has no memory, if chance is even a factor at all, but I know for sure, beyond a shadow of a doubt, that God has a perfect memory. I know that chance did not create my children. Chance did not weave together their DNA, nor did chance allow for mutations to occur, allow for pain and brokenness to trifle with new life. God did. That’s reality. Did he create mutations? No. Did he mandate brokenness? No. Did he allow both of my children (as well as me) to be discombobulated on a cellular level? Absolutely. If He didn’t, He isn’t God.
See how hard this is? Tonight, as I sit here in an eerily quiet house, Jared (aka Dad of the Year, Man of My Heart) has taken the boys to a basketball game and I am typing with my eyes closed on the couch, fingers flying across the page, and all I know to say is this – my soul requires, my faith requires, the Spirit within me requires that I believe that God allowed each moment of pain we are experiencing. Isn’t it amazing how much easier it is to believe these things for other people? I have observed human suffering that goes unbelievably beyond what our family is experiencing, I have read about refugees, studied the foster care system, gazed upon the homeless community and, while my response has absolutely been to engage however I can, it has also come with a side, a main course really, of “God sees. He knows, He sees, He has allowed. And He is still good.”
Because the thing is, who the heck is this God if He does not see? If He missed this one. If the day my children were being formed He didn’t correct the typo showing mutated genes? I say all of this a bit tongue in cheek, but only to have the wherewithal to get it out onto the page. At the end of the day, I mean it. And I’m asking. If He didn’t see this, then Who is He? He’s no one. And because He is good, because He is giving me faith that I don’t even understand, not even a little, I know that He is not no one. He is the Greatest Someone. And because He is the Greatest Someone, He knew. He saw, he knew, he allowed. Not one mutation, but two. Not one clubbed foot, but two. Not one surgery, but two (and counting).
Not one child, but two.
Owen, the untouched one.
The truth of the matter is that we do not know if Owen will ever show symptoms. I have never shown symptoms. The genetics lab is digging more deeply into Owen’s results, looking for variances between his DNA and Gabe’s, for possible explanations of why Gabriel is presenting so many problems so early, why Owen shows none.
He may never show anything. Not a thing. Or one day, he may try to run across our backyard, but he stumbles. He is confused, so he tries again. He stumbles again, spraining an ankle that has previously seemed strong, carried him well. Or he may start to say, “what?,” more often. And after I realize that he actually cannot hear me, I’ll remember, I’ll remember that he could start showing signs of deafness. Or not. We may walk through his entire childhood, he may walk through his entire life…well, literally. He may walk just fine. He may hear just fine. He may never even need to engage this on the personal level, other than awareness of the knowledge whenever we determine it’s best for him to have it. This may always be a part of Gabriel’s story for which he has empathy, but not sympathy. Or, he may find himself braced one day. We don’t know. We are not living in fear. But we are aware, and we didn’t want to have to be aware.
There is already so much awareness. There is already the bare baby feet I see while walking through a store, standing at church, and my breath is taken away. Awareness. There is already the continual glances down at Gabriel’s new braces, the ones he is supposed to be wearing 23/7, the ones that keep slipping, that he hates, that make sleeping nightmarish, just to bring things full circle. There is already the twinge of pain in my chest when Owen asks when Gabe will be able to play soccer with him, when he will walk, when he can teach him how to play baseball. Awareness. There is already the forcing of myself to schedule routine life things, fun things, work things, regular things, new things, with full awareness that I may have to cancel for an appointment, a surgery, a new discovery. There is so much awareness.
And now there is not one to be aware of, but two.
I am writing from such a raw place, which is perhaps the most common feedback I receive about this blog. “You are so raw, so vulnerable.” It occurs to me that on the other side of rawness, someone is bleeding. On the other side of vulnerability, someone is naked, unprotected. I am hesitant to even publish this while I’m in this frame of mind, while I’m recognizing that, yes, it is good, beautiful even to be raw, to be vulnerable, but that doesn’t mean I want to be. I believe in the power of vulnerability, or maybe I just believe it for other people. Maybe the publishing of this post is the greatest act of belief I can muster today. Maybe the bleeding and the nakedness make it all the more easy for Him to show through me. I don’t know. I hope so.
Because I know so many will want to know, because I want to know myself, I’ll tell you that there aren’t many next steps for now. As far as Owen, we watch, we wait and we ask God every day to keep us focused on Owen as a person, just as we ask Him to keep us focused on Gabriel as a person, not as a patient, not as a problem, not as a potential tragedy. These are our children. They are our joy, our treasure, our prize, our adventure. None of that has changed. None of it changed when we had Gabriel’s first revealing sonogram, when he was born, when test after test after test came back with more questions than answers, and nothing changed for Owen yesterday. While they may be the ones’ whose bodies house so many questions, so many unknowns, they are the ones whose hearts, whose laughs, whose discoveries and affection provide the greatest comfort, joy and grace to us.
Isn’t that just like God? He gives and takes away, sometimes seemingly all at once. He allows questions to linger and He answers questions we didn’t even know that we had. I have lists of questions in my mind, some even on paper, and they may never be answered. But, in a way, this post is evidence of so many answers He is giving to questions I never verbalized, of so many lessons to learn and truths to believe and gifts to open.
I come to the end of myself, in a way, when I write. I start tangled and messy, unsure and, really, a little frustrated almost every time. And then it starts to spill out. I pour out of me, He pours out of me. And at the end, I believe more than I did when I began. These posts are my cry for Him to help my unbelief. And I want to say that while I still struggle, while I am still angry and sad, I am still stunned and swirling, I believe. And I believe that He will continue to help me. He will continue to find me, and I Him. I am not alone. He is with me always. I am not one, but Two.