It’s been six weeks and two days. It feels like yesterday.
I have good days, when I remember he’s gone a mere five times that day. It’s when I smile at the happy memories of past shared jokes, his rich, sophisticated humour and telling me about his victories.
This is a bad day; a day when I wake up three times through the night in a panic, when I pretend I’m not home when someone calls, and feel guilty when my body says it needs feeding because I’m still alive. It’s a day when I find a joke or some relevant information I want to share with him, and remember that I can’t. It’s when I feel it’s all so unfair, and I want to punch walls and rail at the fates for making his life a living hell and then taking him away from me. It’s when I feel selfish.
My friends and acquaintances are relieved that I seem to have moved on from my son Chris’s death. Invitations to coffee and gatherings have resumed because I appear normal. I go shopping, do my chores and I’m seen around town, greeting others with a smile and have conversations about town events. They assume I would be happy to help with this or that charity, to serve on some board, and to generally resume as I did before. They think I’m over it, like I had a bad flu but now I'm all better.
I have been called courageous and strong. I’m neither. I did not choose this. Who would? But I learned from my son, who also had no choice about his tortuous disability but who was “accused” of being strong and courageous. He coped and adapted, as I must do now. He taught me how to maintain my outward sanity, and I will always be grateful to him for that.
I have been through death before. I know how it feels to the living. But the ones I experienced were of people who had a full life. But the death of a child, no matter how old they are, is the defining moment in any parent’s life and quite different from any other loss. It goes against all human expectation of the parents who expected to lead, not follow into death. There is no “getting over it”. You merely survive and bear the scars. They are deep, sometimes open and oozing. All you can do is throw a bandage over them, so they don’t show their ugliness. It’s too personal. After all, you created this life; they heard your heartbeat close up, lived as you lived, ate what you ate, until you finally brought them into the world, full of hope and joy. It is the most intimate relationship you will ever experience.
I was there when he first took a breath. I was there when he took his last. It shouldn’t have happened that way…he should have been the one urging me on my way, not the other way around. I feel robbed.
Some people may say inappropriate things. They don't mean to be thoughtless, like my husband's elderly catholic aunt who is a nun. You would think she would be more experienced in her profession, but then she's from the old school, where what she says is what has always been said. Still, while I can't help but feel a bit hurt, I also know she has a good heart and meant well.
People are afraid of mentioning his name, in fear that it will re-open these wounds. There is nothing to re-open; it’s always there. We merely learn to live with it. But it profoundly changes you.
A parent is deathly afraid of their child being forgotten, and that by not speaking of them, they will fade into insignificance. The kindest thing anyone can do is say their name, relive memories, cry or laugh with the parent. Yes, we will probably tear up, so be prepared for that. The tears are dual flavoured; sweet and sour. We want to taste them, we want to experience them, because it validates that lost child’s life. We don’t want to forget them. We don’t want them to fade to invisibility.
When someone asks me, “How many children do you have?” I still answer “Three boys”. Just because he’s not here in person, it doesn’t mean he has relinquished his role as my son.
Chris once asked me if I believed in reincarnation. I told him I wasn’t sure, but liked to believe we had several chances to get it right. That’s when he said, “Well, if it’s true, then I must have been a real asshole in my last life to have to live like this. I think I have some making up to do in this life, so I can have it better next time.” And he did his best, even with FOP hampering his every effort.
These are the things I want remembered, his remarkable humour and his rebellious life. If his name comes up in a conversation, we don’t have to avoid it. In the mentioning, he is acknowledged as a person who existed and still has value. That’s all any parent wants.
I lie every day. I lie to people who haven’t been through this; they wouldn’t understand that kind of grief. It never goes away; it merely becomes bearable. So when they ask, “How are you?” I answer “Fine.” I’ve carefully practiced my fake smile. They accept it, because they don’t understand. I will lie to good friends, because while they try to understand, they don’t need to hear about the tears every night, the pillow punching, the anger, the indescribable emptiness in my core. They don’t need to know about the panic attacks that wake me up and leave me choking with heartache, so I have to get up and walk it off before trying to sleep again.
My other sons are going through the grieving in their own way. If they need to talk, I’m here for them. I hope they know that. Siblings have their own memories. Their process with be different from ours and I need to respect that.
Don’t be afraid to talk to a grieving parent. You may not fully understand, but then I wouldn’t want you to. I don’t wish this on anyone. But I also know you empathize, and that’s enough. We just need to know you’ll remember our lost child, to acknowledge their existence, and that you’ll be there when that ugly scar callouses over. We still need our friends. We always will.