Empowered by Grief

Have you ever experienced something that you could do nothing about? Maybe it was a newscast reporting a child who drowned while swimming with his family or you witnessed a horrific car accident on the side of the road. Things happen and happen often enough that we put our heads down and keep moving, hoping to forget or at least not feel anything for the people whose lives are affected from the incident. We push the "happening" into another category so that we are removed from it. But what about when its you or your family who "the happening" has occurred to? We search for answers. We usually cannot find any. We cannot make sense of "the happening" especially when it was one that we could do nothing about despite how much we may believe we could have done something or how much we try to control, manage, or change things for the future so "the happening" does not happen again. No matter what we do we just cant do anything about some events happening.

Imagine watching your long awaited precious infant son grow to 4 or 5 years old, then become sick before your eyes regressing from a childhood thief like Neimann-Pick Type C (an Alzheimer's -like disease in children) as if he were becoming an old man unable to do anything for himself. Would you feel that helpless feeling, many do? What would you do with it? Worse yet, what if you were the child and could do and know that you were changing and were trapped inside the body that didn't work and couldn't communicate to anyone that you were still in there?

The helpless feeling is a powerful motivator. It can turn feelings into anger and it accompanies the grief which then becomes sadness. Eventually, when the sadness and overwhelming grief turn to flat out emptiness and loss, the change is often overlooked because one has been grieving so long.

One thing that is ever present is the fact that at each holiday, each birthday, and family gathering the emptiness will be present—like an old friend not seen since yesterday that just won’t stop pestering you. That is unless you find some sort of faith, or hope, or renewed memory to fill in its place; something to stuff up the hole where your joy once was.

This year marks the 14^th Christmas since my son Kevin Andrew Henthorne Guyer passed away at age 10, one month shy of his 11^th birthday. Drew had been sick since early childhood with a disease that no one could diagnose until 2 years after he passed: the monster that took him—Neimann-Pick Type C. The one thing I have never been able to cope with is the helpless feeling as you watch your child die and feeling the finality of their extinguished young short life.

Today Drew is 25. Each year since, when I buy stockings and gifts to fill them, I find that there is ALWAYS one extra stocking. The same thing happens when I order hamburgers or fries at McDonald's, his favorite place to eat. Unconsciously, that emptiness is filled with the ever present reminder that though his is not here, he is really not gone. Not as long as he is in my heart, in my soul, and my memory. I feel him with me constantly. It gives me strength and renewed faith that despite the helpless feeling of death, there is still life afterwards.

"Get over it" ? Boy this phrase pisses me off!

Though I feel his presence, and it is my strength, it does not stop me from grieving. The grieving spills over into everything, especially if I deny it and the dam bursts. Some say, “It’s time to get over it” or “don’t you think it’s about time to move on?” After my initial burst of rage inside because my son's importance in my life and his very existence is dismissed in one swooping poorly thought out comment I am reminded that thankfully the person with their supposed words of wisdom are just trying to deal with my life-long burden of grief in the only way they know how. Their mocking words, even if unintentionally rude, really come from ignorance because they have not had to experience the death of their child—their bundle of laughing giggling joy silenced—and the thought of the death is unbearable to them so they stop their internally swelling feelings by dismissing my expression of grief. Often tears and sadness mean weakness in our western world, so they cant show compassion.

There is help for these people if they really want to take the time to help. Better yet, you can take a second and give them the tools they need to allow you to grieve without being too sucked in to their emotions and to have tools if they ever find themselves having to cope. I found some help by reading books about how to help a friend grieve and about death and dying. Caution: very little I found gave me permission to grieve, most of what I found explained the stages of grief; but in the circles I was in, seeing or hearing your dead son meant you needed drugs. Most people don't have a clue what to say when you talk about your dead child's soul visiting you or that your mamma (whom they know passed last summer) came to visit you in the wee hours of the morning and you just know she loves you. The awkward silence that comes in response to your comments is as unbearable as the helpless feeling.

• Listen, you don't have to fix anything
• Sometimes silence is good, hugging is better
• Its okay to cry, to get angry, to believe
• The awkwardness is okay, coping with emotions is hard work
• Ice packs (or warm ones) for your face to relieve swelling from crying
• Preparing meals, giving gift cards to restaurants, and housekeeping coupons
• Ask about the loved one that's gone: Say, tell me something good about them...
• Tears are good.

I have found over the years since his passing that the illness, the death, the grief gives me a new sense of spirituality and wholeness one can only find through death and grieving. It’s okay to keep his urn in a shrine in my living room and to light a candle for him when I am sad or to mark his birthday as a self proclaimed spiritual holiday. It’s okay to even cry and be sick inside because I miss him and all that his illness and passing robbed me (us) of. Because I allow the grief to be expressed, I am able to get up in the morning and continue on. And no doubt when I haven’t, it takes over every aspect of my existence and I cannot move forward until I have acknowledged it. It shuts me down completely, even as recently as last week. It’s like a nasty slimy sticky cold that attaches itself to you and won’t let go. It has to run its course. But, you can’t cease to function with a cold, you have to press on. The more you ignore it though, the worse it gets. I have come to realize that the very reason I am where I am and who I am is because of Drew. My grief hasn't gotten me; it has empowered me to find people who have ‘good’ memories of him—since all I can seem to remember is the sad or bad ones—and to make new happy memories of family that loved him and still love me. It has empowered me with a drive to experience life and highlight other lives so that no one’s life has been snuffed out and or forgotten. Its empowered me to live and do what he couldn't and will never get to do.

I still feel helpless. I cannot hold him and giving him gifts in a stocking will not bring him back. I have no one to blame for his death. There was no shooter, no armed gunman. No drunk driver or irresponsible actions. Who would I blame? What laws can I lobby to get passed to change it so that no other child has to die period? An Orphan or Rare Disease law, maybe? The bottom line is nothing could bring our loved ones back, nor could anything take away the grief— the grief that empowers us to keep moving forward; to get up every day and start again. We need it.

Despite the helplessness happiness returns slowly, it creeps up on you. So it’s okay not to be happy during holidays especially the first ones without them. But we should be with family or friends even if just for a few minutes because like us they are facing the helpless feeling too. As members of a club we didn't willfully join, we know life is too precious to have spent it entirely in pain and suffering. In these instances, everyone suffers. Friends and family are there to help you remember the good memories when you don’t feel like making new ones.

There is one thing we can do: we can change our vision of what it means to be human: resilient and strong, yet fragile and vulnerable. To understand that each person comes at life with an entirely different perspective on that meaning of humanity will liberate us. When we accept each other as humans and allow each other’s existence in whatever capacity it is without oppression and prejudice, then real change can really happen. We have to look inside ourselves and take hold of that helpless feeling and make it count, it may be the biggest motivator and empowering feeling we as humans may experience.remember that the helpless feeling is the power behind the change you seek. Not all changes we would make can do anything about what has happened, nor can it ever explain it; but worse, quick knee-jerk changes could create more problems.

My motivation is to tell our story (the silent ones empowered by grief) and highlight others struggles, lives, and journey through grief. If we all had a face and a set of emotions behind all the complaints about our social life, political statements, and daily living maybe more will choose compassion over anger and blame.

If you have a story, I would love to hear it. It doesn't matter if your grief is from losing a loved one or from having a hard life. Everyone grieves about something.