"Unprepared for gain"

I read Emily Rapp's book about losing her son to Tay-Sachs in the midst of my own grief over Harper. Which I think was excellent timing, because not only was I able to relate to her feelings of loss and anguish, but her beautiful prose expressed those emotions far better than I ever could, and I took comfort in the language of a fellow grieving mother.

She's written a new essay: Proof of Loss continuing the story of her son Ronan's death and it's aftermath.

In some ways, I again see myself reflected in the mirror of her loss. "For days after his death, I imagined the crematory fire, and I wondered what happened to his tongue, his eyes, his toenails. These thoughts made me wretch. I wanted to crawl into pictures and hold him. Where was he?"

These are words I understand entirely. I have lived them. Some days, I live them still. She captures the minute detail of Ronan's death, how he looked, how his breath sounded and smelled. I have those memories, too, and though, as she notes, there are no pictures or proof of what those final moments were like, they are the indelible memories. The last to slip away, the hardest to forget.

Emily Rapp, like me is pregnant. And struggling with the juxtaposition of expecting a new child while still mourning one who had died. "Is this your first child? No, I had a son and he died. This is the new crappy conversational exchange that is always brutal and brief." "Nobody is prepared for loss, which is necessarily linked to the passage of time. I believe we're equally unprepared for gain as well.... I'm scared, excited elated, totally untrusting and yet also feeling saturated by, incredulous with luck. Luck, by the way, being a concept that I do not believe in. And yet here it is, blinking in the dark, saying, "Hey, look at you, lucky girl, pay attention!"

I, too, find myself constantly reminding myself how lucky we are. How fortunate to have the opportunity to experience another child, with all of the resultant joys, fears, hopes, frustrations, and everyday experiences, good or bad. The vacillation between the "why me?" anger I sometimes still feel when I think about the soul ripping pain of the past year and the "I'm so grateful this baby's healthy" reminders I get when he kicks or I read the stories of others who are not so lucky in the genetic carrier community.

But Rapp's story carries another piece, woven within, that I cannot relate to. The loss of her son led to the loss of her marriage. That's not uncommon with the death of a child. Lou and I talked about that phenomenon, and the fear of it, shortly after Harper was born.

While I can't relate to Emily Rapp's experience, it serves as a good reminder to me about something else I am lucky in and grateful for: a wonderful husband.

Marriage is hard. Cliche but true. Marriage with two working parents of a young child(ren) seems practically impossible on some days. In the blur of exhaustion fueled never ending to-do list that is your life, it is easy to snap at the worst of times and ignore at the best of times. There is no one easier to take out your anger and frustration with all life has to offer - from the major unfairness of a child's loss to the everyday irritation that three year olds can bring - than the person standing next to you.

In the midst of all of the pain and horror and confusion that Harper's diagnosis and death brought, I did remember to tell Lou how much I loved him. How grateful I was for our marriage. We expressed constant amazement about how sync we were during that time, how supportive we were of one another, how we were passing the test of marriage with flying colors.

We've returned to the new normal and back to the stresses of the real world and the forgetting to be grateful. Lucky for me, I've got a blog, and a husband who reads it. A husband who I snap at and get impatient with (for good reason, on occasion!) and probably taken for granted too often and neglected because it was easy to do so. But for whom I remain grateful and in love with and attracted to.

I am very happy for Emily Rapp, who has found a new partner, with who she is deeply in love. And I am happy for me, too, for hanging on to a partner in life, in love, in adventure, and in parenthood.