Blog · February 19, 2018

Alex’s Anniversary

It’s late February. It’s inevitable. Everything affects me more deeply. I find myself being more melancholy, my grief is more intense, disabling, confusing and all-consuming. My son Alex should be 23 years old in a few days. I didn’t just lose a baby these many years ago, I lost a lifetime of memories with someone that I loved before we ever met.

Some of the hardest losses we experience as human beings are those involving children. They go against nature. Children aren’t supposed to die. In my world, however, they do. Oftentimes children with EB die before they’ve lived, like my Alex did. Yes, he had EB, but we did not know it at the time. In my world, filled with families dealing with Epidermolysis Bullosa, children are gone before they’re healed. It’s tragic and gut wrenching, every single time. I cannot say I ever got used to it, and I hope I never do.

What’s going on in this country right now with thousands of healthy children gunned down at school gets to me in a way that is hard to explain.
It’s truly heartbreaking when your child, born healthy, going to school like any child, is killed by a shooter. Like many Americans, I’m having politics fatigue. Or, to be more specific, arguing-about-politics fatigue, that’s why I no longer do it and haven’t done it in a while. Just today though, when some guy in one of my groups called the teenagers protesting in various cities the need for gun control “snowflakes” just got me by the gut. The girl speaking at the rally lost her friends, her teacher, and this guy insulted her and her friends? I tried to engage him without calling him names. His reaction was to insult me and call me every name in the book. Reply after reply I was a moron, a bit*h, a retard, an idiot and on and on with the aide of insulting memes. My replies to him were if he could actually respond to my question without insults or memes and he replied with more and more insults. I just shook my head and felt pity for this man. That’s why it’s impossible to have a conversation anymore, he is closing his ears and going “na-na-na-na-na”. I wasn’t offended at all by the insults, he just confirmed my feelings about political discourse. It’s impossible. Why bother?

Yes, I can relate to the parents of the slain children unlike the pitiful man I tried to engage in the previous paragraph. He couldn’t care less, that much is painfully obvious. How much blood is too much blood for him and people that think like him? Guns kill nearly 1,200 children in the US every year. Shootings are now the third leading cause of death for US children. I suppose that’s not enough blood for him, and he will never learn unless he loses a child to gun violence himself.

This incidence, however, taught me that there are a ton of uncompassionate people out there who most likely never lost anyone truly important in their lives so their brains cannot relate… at all. They feel we are exaggerating and using a tragedy to our advantage. As if saving children’s lives is a political move. Ugh.

Losing a child changes you immensely. It messes with our heads and changes your way of thinking more than you can possibly imagine. Children are pure, innocent, and shouldn’t suffer. But they do, every day, and I see it. Children in the EB world are in and out of the hospital, constantly battling for their health. Their deaths at times are unpredictable and sudden. Every time it’s not fair.

Sometimes I want Alex’s Anniversary to be okay and maybe not forget per se, but let the time go by without making too much of a fuss about it. My body, however, reminds me every single time. He’s just as much my son as Nicky and Connor are, those tears are to remember him. I have known from the start that his existence did not come to bring me sorrow. He is my greatest teacher and his death has taught me so much, deepening my gratitude for all that I have and strengthening my compassion and empathy for others. . The grief never truly ends, you just get used to it.

Love & Light,