July is Bereaved Parents Awareness month, a time for most folks to thank God, I guess, that they still have all their children living and breathing. Yes, I’m being cynical. I’m in that kind of mood. But I appreciate when those who haven’t lost children are interested to hear from those of us who have what we need, what works for us, and what doesn’t help. So here’s my personal offering of education for those interested in listening.

First, I’ve been living this nightmare since November 2013. Before then, I used to wake up each morning aware that I was one day closer to death. Yes, I had an unusual sense of my own mortality, but having been born to older parents, having been told as a young child that I better appreciate my dad since he wouldn’t be around long, and having attended many more funerals than weddings, death was always in my peripheral vision. Perhaps, that’s why I was always so terrified that my children would die. I’ve always been acutely aware that everyone does. Anyway, until Nov. 11, 2013, the first day I woke after Jess died, I always began the day rather anxious that my clock was ticking away, not that I feared death, but rather that I dreaded its arrival.

Now, I wake each day and pray for the years to pass quickly. I believe that only time will deaden the pain of loss and make it bearable for however long I must endure. Five years from now, I will have longer stretches of time when my mind isn’t possessed with thoughts of my daughter’s death. I hope to have found my all-but-lost capacity for laughter. And I no longer dread the idea of being at the end of life, no, quite the opposite. Like the runner who completes the long-distance marathon, I too will stagger emotionally if not physically exhausted across the finish line.

Time is my friend and my enemy. The more time passes, the more I can look back and see that I have healed some, that I have changed in some ways, that I no longer am as raw as I initially was. I can stand crowds now without having panic attacks. I can enjoy certain things such as eating and physical activity. My brain recall has returned to some degree, and thinking isn’t as maddening as it was when I still felt shell-shocked. These are all good things.

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But time is still my enemy too. The past haunts me. I see my babies, my little girls, and I long to hold them again. Sarah is now 28, healthy and alive, but I still long for my little blond girlie who needed her mommy but is now grown up. And that longing for both Jess and Sarah would be just as real if Jessie were still here with me. I mourn the loss of being a mom to my babies and young children. That part of my life is behind me, but it’s still an ache in my hollow heart, a heart that hasn’t yet found another meaning for being.

Time in the present means living through the minutes and hours of endless questioning if anything anyone could have done would have saved my daughter’s life. If only she hadn’t broken up with her boyfriend. If only her girlfriend had moved down like they had planned, and the two of them had gotten an apartment together. If only Jess had followed through with her plans to have her friends pick her up from the bus station that evening. If only I hadn’t been so consumed with my mother’s funeral and could have noticed how pale and tired Jess was. If only, if only, if only. There are a million challenges to her death that I’ve come up with, and not one of them will bring back my girl. I hit the replay button over and over again, and yet I still get that phone call from her dad telling me my beautiful crazy daughter is dead.

I believe that everyone who experiences the loss of a child is like a lost soul wandering endlessly through a desert, looking for an oasis or village with water, comfort, a place to find peace. We talk to each other, to those further along in the process, hoping to be given a map to quicken the journey, a potion to quench our horrible thirst for answers. I sense that if you really look at us you’ll see the deadness of sharks’ eyes, the spark of life absent if we let down the pretense. We still love passionately, if not fearfully, but the fire has gone out. I know there are those who have made it back to the land of the living, those who had to show up for their other young children, or those who are graced with the gift of acceptance of what is. I’m not there yet. I think I’m on the right road, but as Frost wrote, there are “miles to go before I sleep.”

So as you move forward in your daily living, with all your dreams, goals, complaints, and meaningful and meaningless ways of being, know that we who are bereaved live dual lives. On the outside, we can appear to fit in. It’s just the suit of clothes we’ve managed to squeeze into that creates the image of normality. But the conversation in our minds, the constant background noise of our daily living is the symphony of loss we continue to endure. Don’t ever suggest that we should “get over it,” “move on” because our children want to see us happy, or offer that we should “volunteer at something to help others so you can get your mind off your own problems.” These “caring” suggestions will fill us with rage and strengthen the sense that we are a people set apart, no longer members of normal society, perhaps no longer human. And in the end, what these suggestions really say to us is that “normal” people aren’t comfortable with our grief, with the people we’ve become, and care not so much for the end of our suffering as they do the end of their personal discomfort at watching us grieve. Harsh words, perhaps. But the truth is we are forced to wake up every day at the bottom of the hill with the huge boulder of our grief and the endless uphill trek. You can choose to journey with us, or you can turn and walk away.