I Love You Both


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.

Driving in Reverse


For a split second, in my mind, he was not quite seventeen yet. For a split second, as the wind whipped through our hair and the music blasted and the sun beat down through the open roof, I was sent back to that summer before it happened, that summer of happy, when he was just a beginning driver and the Jeep was only six months old, and dreams were alive and opportunities were endless and his future was wide open and we were all free and everything was perfectly fine.

For a split second I forgot that it had just taken three people to physically lift him inside his Jeep and place him gently onto the passenger seat, adjusting his legs and his arms because he couldn’t do it himself. I forgot that I wasn’t sitting next to him because I was teaching him how to drive. I forgot that I was driving because he couldn’t, and I forgot that he probably wouldn’t ever sit behind his steering wheel, again.

I forgot that all our lives were now shattered.

As we drove, that entire three-and-a-half-year-heart-wrenching-span-of-time since the accident just seemingly blew out the windows and swirled with the dust particles that had been sitting inside the Jeep for the same amount of time, and then disappeared.

The heartbreak, the grief, the dread, the denial, the refusal to believe what the doctors told us, the twenty-four-hour-a-day care, and the total exhaustion. None of it existed in that split second.  Time rewound in sync with our distance and speed, and we drove faster and further away from the present.

As I navigated the roads, he adjusted the volume on the country music stations I had taught him to listen to and love so many years ago. He turned it louder and louder with his one good hand, and as he sat back and listened to his favorite songs he watched the old familiar roads and the scenery, the scenery he can’t usually see from his perch high up in the wheelchair van.  I knew how happy he was to be in his Jeep with the top off and the hot wind in his face, and my heart became lighter than air but full of something so much heavier.

I turned slightly toward him, and as I glanced at him out of the corner of my eye I pretended he was no longer disabled.  In my mind, then, he was fully abled. He was strong and tanned. He was sitting tall without slumping, without any form of assistance. He was all that a carefree teenage boy with a new Jeep and a new license should be.

I fully turned and looked into those beautiful blue eyes and I saw him smile. From my vantage point I could only see one side of his smile, so to me that smile seemed perfectly symmetrical and the muscles on both sides of his face gave the illusion of working together.   And as he smiled, I laughed. I laughed as untroubled and easily as I always used to laugh when I was with him in his Jeep going anywhere.  And I laughed until I began to cry.

How often had I begged to no one in particular in the dark hours of the night when my heart screamed with the pain of losing the boy I knew….how often had I begged and offered my soul to whomever might want it, for one more chance to be with him as he was before his accident?

“Please let me go back, just one more time.” 

On that day, in that moment, as the dirt roads passed under his Jeep, we drove forward but time somehow reversed.  I knew I had been granted that wish of reliving a memory with the boy I once had. Not just in my mind or in pictures or dreams.  This memory was real enough that I could feel the wind in my hair and the sun on my shoulders.  I could smell the fresh cut grass and the wild flowers as we drove through the fields.  I could reach out and squeeze the hand of the boy sitting next to me in the passenger seat, and he could squeeze back.   I could taste the joy and wild freedom from so long ago, now so lost.

For a split second, I went back to the time before time stopped.