My heart has been in pain lately. The nature of the pain has changed, since really it is never gone. Its there every day and most days it is just one more of a hundred billion things that make me myself. Usually it is just hanging out, eating fries or smoking a cigarette, eyeing me from the dimly lit corner I have placed it in, that has become its home. Sometimes I hear it calling me and I am just too busy to give it the attention it desires. This pain, this presence is needy sometimes, though it is reassured, after this many years, that I know it is there. It doesn't call for my attention nearly as much as it used to. It is secure in its place.
But recently it has come back to me, out of its corner, its heavy arm placed around my shoulders in the old familiar way and I alternate between shrugging it off and leaning into its embrace. It is going to be ten years in January. Ten. There is a ten year, ten billion pound weight in my chest. Ten years at the end of this month since his bone marrow transplant. So much happened at this time of year and the memories recall the desperation that forced us to try this barbaric treatment, the fragile hope it gave us, the nauseating pathway that ended in the nightmare we most feared. The suffering we caused him. All the things he yearned for. All the things he missed. All the ways that I miss him.
And I do miss him. Actively.
It is this sweet and bitter taste in my mind, wondering who he'd be, missing who he was. Nick and Alex growing up and moving on underlines the fact that even if he were here, I would not have much of who he was at 13 left to me except the memory of him then. Grief mingled with empty nesting is a unique ache. All of them are out of the house. None of them are who they were. None of them love me now like they did then. It both takes out some of the sting and at the same time makes it infinitely worse. Sometimes it is hard just to swallow.
I am proud of all I have done. Who I am. What I have accomplished. I carry the death of Joseph in my pocket everywhere, every day, every minute and I am glad it is there. Just this morning, watching a video featuring this song, I felt such gratitude, that if Joseph had to have cancer and had to die from it, that of all the women in the world, I was the one chosen to be his mother. That I was given that unique experience of witnessing the absolute miracle of the human spirit to rise up and to know some part of him came from some part of me. He rose up every single day. He did it with humor and determination and a refusal to fully let his cancer take over his thoughts about his life. When he left this earth, I felt the mantle of that strength slipping away like a silken scarf, lifted by the breeze of his spirit leaving me, gliding from my neck and in danger of whispering away to nothingness. I grabbed it and held on. Sometimes holding onto it is the hardest thing I have ever had to do. Some days I am not even sure it is still in my hand. I don't feel so very strong just now.
I am weary. That's the thing that doesn't really seem to show on the outside. I am so so tired, like all parents after the long-term loss of their baby. There are just minutes, hours, days when I am so very tired of shoring up under the weight of that scarf. It is the thinnest thing ever and yet the heaviest thing to carry. Some days I truly wish I had found the end of this road. As ten years without him approaches, as the walls of our house pause in this new emptiness without his brothers, I feel the echo of my steps and I wonder what the point is. It is a whole new world and I am tired. I know it can be good and I know I can be happy. I look forward to finding out even more where my place is, what my purpose is and how I can honor those things. But some days....some days......I just don't know anymore. Some days it makes me angry, because I just don't want to.
This song filled me up this morning. I feel like it is murmuring words in my soul that echo my own emotions. You don't do it because you are better or stronger or possess something inside that someone else does not. You do it because it is your life and you have to honor it. You need that like you need to breathe. I rise up and I will continue to do so. I am proud that I can and I will. I tip my chin, set my jaw and go about the details of my mission, one tiny, excruciating step at at time. I'm not done yet and that is the primary thing to pay attention to. I'm not done yet....so.....I'll rise up. It isn't always this hard. It isn't always this painful.