He sat behind me in the car. He usually sits on the passenger side so that he can converse and chat and discuss the sea of thoughts that flow through his brain and then gauge my reactions to them. Sometimes I wonder if he needs to see my attention as well as feel and hear it. But today, on this sorrowful day, he sat behind me. The only glimpses I could catch were the fish eyed lens images of my minivan camera. He couldn't see me.
We rode in near silence for the entire car ride. Our thoughts and emotions were drowned out by the sounds of Hamilton playing through the speakers. I cried for hours. Through those tears I was grateful that he couldn't watch me.
When I was young I wanted no children. Then, due to the enormous dilate of spending time with two amazing boys, I was persuaded to want only boys. If I was to have children, I wanted boys. When Chief and I married, and I was pregnant, I hoped and prayed for a son. Girls were emotional and messy and eye rollers, I explained to God. Boys were fun and active and hilarious. ::side note:: Girls are fantastic! I was an idiot ::end side note::
God saw fit to give me only one boy. One boy, who from the beginning of his existence had to fight to survive. His placenta was bleeding out from week seven of our high order multiple pregnancy, until two weeks before delivery. I was placed on strict bed rest. We were told this child, our only son, would probably die in utero. If he made it to birth, he'd probably die then. If he didn't die, he'd surely never walk or talk or sing or dance or do any of the magnificent things that he does so miraculously every day. The bed rest was more to keep me alive, not him. Strange to think of these things now...
His brain is surrounded by curly cues. One of our NICU nurses said "OH Sugar! He's been kissed all around his head by angels!" She had this way of saying words like "sugar!" and "Sweety" and "Honey" that didn't annoy me. To this day, those words still echo emotions of comfort in the midst of the NICU nightmare, but I digress...
RP was my genes. It is my DNA, my broken code of eye information that I never knew I carried. The diagnosis hit me like a sucker punch. It was the first thing I didn't ever fear for him. It was the one scenario I never imagined. It blindsided me. It still does.
I begged God for a son, so that I could curse him to a life without sight. And in true me fashion, this RP is like nothing else... it's aggressive, and dominating. It's destroying with a speed that his doctor doesn't understand and struggles to grasp. Today she said "Something else must be going on with his eyes..." What the hell am I supposed to make of that? I begged God for a son, I craved after a son, and He in his Love, or His sorrow, offered me one. He said I will only give you one of what you beg me for, because I know your heart can't handle two. My one with broken eyes.
These appointments are a result of my begging heart. This loss stems from my genes. I gave it to him. There's no avoiding the realities. The sorrow is mine to hold. I carry this sickness, hidden inside of me. It is masked by enough healthy retinal cells... it is buried underneath the other cells that are doing double duty for the faulty ones.
It's strange to have so much to say and yet no desire to say it. It's haunting, in a sense, because the conversation doesn't involve you, my children. It's a conversation between me and God. An understanding of the mercy of no. A grasping of the hurt that is, and the protection from the hurts that could have come. It's nearly impossible to define, the grace in the gore. I would rip out my eyes and give them to you if they would be helpful. I would divide my cells, my core, my body in half if that would somehow change what you were destined to be. But that's pointless. Your journey is your own. Your loss is your own, and its might and its glory and its sorrow is its own process for you.
I just break, every time you do. I break every time you stub your toe. I break every time you run in to doors, or walls, or things that you don't see. I want to save you from what I have given you. I want to erase this reality from your body, because you have overcome so much, and I wish you didn't have to overcome more.
You are more amazing and fantastic than you will ever know. You light up in a room in a way that you will never see. You are funny, charismatic, charming, with the brains of a genius. You have a joy that can't be defined, and yet you're vulnerable and human. You can't stand the concept of injustice and you don't hold grudges. If losing your sight is to be your Achilles Heel, then so be it. You bring sight to my darkened mind every day.
Yet, today you sat behind me in the van, quiet. You looked out the window and I shed more tears than I care to recount. Together we faced down this giant sorrow. You faced yours, and I faced mine. Together we made it through, and together we both noticeably exhaled as we walked out. It was like we couldn't breathe, and then, suddenly we could again.
