Today marks five years. Oddly, it’s the day I wanted to fast-forward to five years ago when I thought by now normal would have been achieved and the day-to-day would be far behind. Wait and see, I said then. Everything will be all better in five years. This will just be a blip in the radar.
The blip turned into an all-consuming monsoon; the sprint turned into a marathon; the journey of hope, love, and faith often turned into depression and frustration and a sadness that no sense of humor could ever completely cover.
Five years later, I hide it well. I laugh a lot. My closest friends and some family members sometimes forget I struggle. Sometimes I even forget I struggle. Everything has become so normal. This is our life now. The lack of normal has become normal.
Somewhere along the way I guess I somehow came to terms of some sort with all of it. The tears don’t come as easily any more. But I’ve never dealt with the grief, and I am terrified of that. Just as I never dealt with the grief of losing my dad three years later. At some point it all may crush me. But we have to move forward, I guess. We have no choice than to move forward. For his sake. So the sadness is swept under the rug inside my head and I only concentrate on today.
I love the boy I have and the boy I had fades into the distance.
Sometimes I forget how deep his voice was or how strong his arms were or how much he helped me. Sometimes I forget the goofy things he did to make me laugh so hard my stomach hurt. Sometimes I forget what a good son he was and a good friend to his friends. Sometimes I forget life even existed before his head hit the stone wall.
We were a team then, but we are a stronger team now. Don’t tell Dad, he’d plead with me then over a damaged car part or a broken computer or another waterlogged phone. Only if you don’t tell him I hit the garage again, I’d answer. He never tattled on his sisters, but he couldn’t lie to me when I’d ask about something he had done, easily getting himself into trouble for every first-time infraction. We talk now about the time he and his best friend chopped down a tree in the state park. Or set off about 30 fireworks at once in a wheel barrow in our backyard. But all those events are just stories now, stories from another time, with another boy.
I’m ok with that, I thought. I’m okay because I have a new son, a new purpose now. I’m okay I thought, until yesterday when my daughter sent me a video she had compiled a few years back of a few years further back and I saw him today as he was then and the pain came fast….searing pain…. and I saw him and I missed the him that was him, and the now broken pieces of my heart, only lightly glued back together, came crashing down in a heap.
It’s impossible to explain how a mother’s love can separate into two for the same person….he’s here but he’s not, but he is, and I’m so grateful, and so love him, but he’s no longer here and I miss who he was and who he could have become….at the same time. I miss the dreams I had for him and the future I had for myself. Sometimes it makes no sense to me….my own brain can’t handle it. Sometimes it just wears me down and out.
I’m tired. I’m alone. I battle by myself. I am angry and I am bitter. I don’t trust most of the medical profession, especially in this area we live, because throughout the last five years they didn’t trust me. So many hurt us more than helped us, making us travel two to three hours away to fix what they erred. Case workers and managers have been a step up from worthless in our situation because no one ever talked to us about finding help or what is available or where we could go for advice or assistance. We had to find our own way, traveling down streets and roads without any sort of GPS, just to understand what help is available for someone with a brain injury, how to fight insurance, and that, yes, progress does continue past the two year mark, well into the five year mark. This part of the journey, the advocating and the fighting and the learning the system, has been even more exhausting than the caregiving. We should have had help with this.
The boy I have today is sweet and loving and kind and funny and makes everyone love him with all their heart, the first time they meet him. I am beyond grateful for him. You were touched by angels, I tell him. He lights up my world.
With his first, “Hello. What’s your name?” he creates smiles no matter where we are. He’s intelligent. He can figure things out when he’s not too tired or foggy. He loves people; he loves visitors; he still loves the friends who no longer show up. I love this boy more than I loved the first. I have to. I convince myself he will be okay when I’m gone. I convince myself that no one will ever make fun of him, or take advantage of him, or abuse him in any way. I have to. But in today’s environment I’m no longer sure.
In the past five years, I have learned that it’s okay to cry, it’s okay to laugh, it’s okay to hide my emotions or wear them on my sleeve. I have learned to be more honest in my thoughts and my feelings. I have learned how to dig deep to find my center, my core, my strength and hold on tight. I have learned I can love the same person, who isn’t the same person, one a memory, one in the present, with different types of unconditional love. I have learned that love really does heal and mother usually always knows best.
I have learned that the strongest weapon in any arsenal is the gift or the power of love.
Thank you for being such a huge part of Damon’s Army for the past five years. With your help, we will move through the next five. In five more years, maybe this will all have been just a blip in the radar.
karen m pyros 