A really good life with a few bad days.

The first thing that I need to say is that I simply do not know one single thing more than you do or anybody else in this world. You might not know it yet. But it is true. We all have our own plights/struggles/battles..call them what you like. I think the uniqueness of my situation would be that perhaps more challenges have emerged in the last few years that have caused me to take a solid look inwards. For sure, there are many stories. Death. Betrayal. Terror. Sadness. More death. But also hope. Laughter. A great deal of hope and laughter. I’ve discovered my need for genuine, authentic connection with people. And I’ve reached the point where I simply do not have even the slightest ability to deal with one iota of bullshit. It’s not only about survival now. For me. For my one remaining child. For my husband. And to honor the lives of my children. It’s about thriving in the face of adversity. They simply cannot have died in vain. I have to get this bizarre compilation out. If I had not lived it, I would not believe it myself. As the saying goes , you really can’t make this shit up.

The long and short of it is that none of which I write is who I am. Death does not define me. (You would think by now it really would.) Abuse does not define me. Being a single parent does not define me. Instead, they add to my palette. They add brightness to the tapestry. They add the shadows that give the tapestry depth. Without the dark shades and variations, the fabric is blindingly bright and difficult to look at. The patterns , light, darkness and movement of the tapestry, make the fabric of life interesting.

I knew when my son died back in 2006 that I was forever changed. I knew it before he died too, but probably not in such a profound way. Having a child born with a disability is life changing. But he did not just have “a” disability. He was born with a mitochondrial disease best described as complex one deficiency of the Krebs cycle. It was total disability. Like the difference between a fender bender and a car that has been totaled. I knew soon after he died and the dust settled, that I wanted to help people. I also knew that my take on the situation of losing my son was different from others and that if there was an opportunity to help other families in pain or who were paralyzed by death or a terminal diagnosis, I wanted to help. The thoughts swirled around in my head. And swirled. And continued to swirl but never settled into a plan of action.

Death does strange things to people. I personally believe that it strips us down to the bare bones of who we really are. Good stuff comes up to the surface and so does the bad stuff. There is no hiding in that place of vulnerability. After the initial “holy shit” time, I felt peaceful. My son no longer had to struggle to breathe. He no longer had to be fed through a pump and a tube into his belly. Actually, the first thing that I did after he passed away was to clean him up and take the tube out of his stomach. And then I rubbed his belly like I had not been able to do for over a year. It was so smooth and perfect. And then I put him in comfortable clothes. His twisted, constricted body did not fight me for the first time, in what felt like forever. He never fought me literally, it was just that his muscles were contracted and he wasn’t very “bendy”. The bigger he got, the less “bendy” he was. He never fought me, ever. He was such a freaking angel. He fussed when he hurt. And that was about it. I think we did a good job on that front. He didn’t hurt much.

I knew I needed to help people but I found that it was hard for people to hear my view on death and the blessing that was my son. I could talk about him all day long. But not in a morbid, doom and gloom way. He was such a gift. I was such an a**hole before that little man. Seriously. And I have said a million times over the last 18 years, if I could re-live moments in my life it would be the birth of my three children and the death of my son. It was a transforming moment in my life and one that I am so honored to have experienced. I was with him in the first and last moments of his life. Coming into the world was not so peaceful for us. But leaving was peaceful and miraculous. Had it played out in any other way, things may have developed into a totally different scenario and I would have been a hot mess for the rest of my life. But he gave me that gift and I will forever be thankful.

I believe in signs. But I believe that we have to be open to them and take a a leap of faith in times that might feel like the worst times to jump. I am curious of other peoples stories and where the lessons have led them. And I am not just talking about the death of a child. I am talking about hard decisions, losses, struggles and unexpected “shituations” that life has thrown at you.

My Lesson: Death did not and does not define me. It is the only thing, aside from being born, that we will all experience in life. Facing our own, the death of our loved ones, our beloved pets..is all relative to where we are in life. My lesson has been that the joy in life is still there. We have to make space for it. What lessons have you learned from the struggles, hurt and challenges in your life? Are you putting them to good use yet?