It was Emily Dickinson who said in her beautiful poem “After Great Pain”:

This is the hour of lead

Remembered if outlived

As freezing persons recollect the snow

First the chill, then stupor, then the letting go

It is strange and amazing how we can read something one day and find it nothing more than haunting and beautiful and the next grasp the fullest meaning of each short word. It is remarkable how the death of a child can bring your senses to a sharpness you never experienced before. It is this sharpness that allows us to feel more intensely at these times though it doesn’t always feel like a gift. Often times I wonder what I would say to parents like these.

At one time I wore shoes that fit in a similar fashion. This doesn’t make me any wiser, but I recollect some of the things people did say to me and I wonder now as I did then, “what were they thinking?” I was blessed to have one woman placed in my life that acted as a guiding beacon to me during these times because of some of the advice she gave me–though not all of it came in the form of words. If I had to pass on anything to other parents who were hurting because of the death of their precious child what would it be? It wouldn’t be enough, it would be lacking, and it would be less than perfect. It would be heartfelt and honest though; it would be something like this:

To Parents that Mourn,

Tears and gut wrenching pain, those will last for some time, but they will not last forever. There will be days when you wish they would stick with you until your very last breath, like the first time you smile, truly smile, or the first time you laugh like you used to. Shockingly these days will also come sooner then expected. Don’t be hard on yourself when it happens; instead embrace it and dedicate those moments to that child you have lost. Until those moments come, live for today. Cry when you need to, sleep when you want to. Don’t live for others and don’t despise yourself for still living without your child.

Keep in mind the simple fact that grief is a one-man vessel and you captain the one you are in. It hurts and it’s lonely. Find others like you. Not that these people will know exactly how you feel, but there is a comfort in knowing someone else who has or is traveling a similar journey. It is nice to have company along this long road.

Stay close to God in whichever form he takes. When the cards and dinners stop coming to your doorstep He will be the only one that doesn’t leave you behind. When others start thinking you should “be over this by now” He will be the one that will listen to your heart while you cry unceasingly. When the well-meaning words of others sting, His will cushion and heal. When you cannot hold onto your child He will be the one solid thing you can cling to. Years later when it comes flooding back to you and it feels like you are going through it all over again it will be God who never tires of hearing about this precious child.

Do not let the “what ifs” and the regrets haunt you. These are your worst enemy. You were the best parent you could be to this very special child and will continue to be that amazing parent in the future. Remember that you gave it everything in your power. Those days when it does not feel like you gave enough remember you gave this baby your all, which is always good enough. Don’t sell yourself short. You are a parent even if you have no living children. Just because you can’t clothe, feed, and watch your little one grow does not mean you can’t still do thing for him/her. You will find precious and special ways of being the mom and dad you can still actively be. This role of yours does not end with your child dying, it just changes it. You can make it all you want it to be.

Embrace life, especially embrace the life of your baby. It was important and real. It had impact and meaning. It had purpose.

- Another mourning mother

Submitted by B.B., who chooses to remain somewhat anonymous.
“If someone were to send out a search party for me they’d only have to look in a few places.  With my kids playing, reading, and snuggling, in the kitchen cooking up a storm, at my sewing machine trying to make something new, or at the computer writing.  When I don’t have my kids glued to my hips I can be found running, cycling, and swimming.  I blog about the quirks of my life and the joys of motherhood after the death of my oldest child on my blog Simply B, Simply Me and I can be reached at  simply.b.simply.me@gmail.com.”

{Continued from last week’s essay}

Because of the Hepatitis C diagnosis and subsequent cirrhosis doctors later agreed to evaluate him for a heart/liver transplant, quite rare, but several have been successfully completed around the country. Doctors wanted to do some lung studies first, before sending him to Seattle for a heart/liver evaluation. The doctors discovered his lung functions were extremely poor, possibly due to fibroid tumors, probably from anti-fibrillation drugs: he would need a heart/liver/lung transplant. Although multiple organ transplantation has been successful, the three big guns have been transplanted only once before.

After six months of waiting for results and decisions, a letter from Mayo Clinic arrived stating the “constellation of his anatomy” was in too great a state of disarray and he was pronounced a non-viable candidate. The sand in the hourglass draining, Mike and I began measuring time as though a bomb were set to detonate at the end of the two-year death sentence. We never told Zeke about the letter from Mayo. We told him only that the doctors said “not now” on the transplantation. Doctors agreed to respect our decision.

The two-year death sentence ended. The hourglass emptied. Zeke didn’t die. He is twenty-nine and has out-lived everyone’s best guesses. Sallow-skinned, arms and legs thin as kindling, eyes sunk, bloated belly, multiple chest incisions, ankles deeply scarred from ulcerations due to poor circulation, a tiny scar on his small left index finger from a paint-scraper I dropped on him while scraping porch windows from a ladder when he was three, short, dark-haired going bald at the peak from twisting his fingers in his hair, wisps of hair trying to be a beard, a Polish pickle nose, eyebrows ramping over the bridge, sweet, gentle, soft-spoken, with an IQ equivalent to Forrest Gump, Zeke lives alone with his cat, Tigger, in a low-income apartment in Kalispell, Montana.

He lives alone by choice. After high school he spent a year at a Bible College, living on campus, then moved back to Kalispell and into his own apartment. He had a good job for four years after college as a video-editor for a TV station, until he grew too sick and missed too much work. Now, he wakes about noon every day, sometimes showers, sometimes not, and opens up his lap-tap to connect with his only “friends” – his internet circle. In the past two years he has been scammed by Nigerian sleaze-balls professing true love and the desire to have his babies if only Zeke would send them money for a ticket to come to the U.S. to live with him till eternity. His current “girlfriend” lives in Florida, ten years his senior, has five children that have all been taken away from her by the state, is on welfare, married, living with an abusive husband and his cousin and four children in a two-bedroom trailer.

About three in the afternoon Zeke might drag his disheveled self out of bed for a hot dog with gobs of mustard and mayonnaise and an ice glass full of Gatorade or lemon tea. He leaves the dirty plate on the kitchen counter or the tiny red coffee table in the living room. He might turn on Dr. Phil or a professional wrestling DVD, maybe play a Wii racing game, eat frozen pizza for dinner, instant-message some more. Days I can coax him out of the apartment for a trip to Best Buy or Target or Walmart are scarce. He doesn’t have much energy to get out of his hovel.

I gather his dirty clothes once a week and haul them to my house. He has a housekeeper that wades in once a week and scrubs the toilet, washes dishes, freshens the cat litter, changes the bed sheets, hangs up new bathroom towels and pushes a vacuum. Every month or so I scour, trying to be respectful of his space but filling a personal need to keep him clean. I defrost the freezer, suck out the corners of the rooms layered with cat hair, shampoo the couch and recliner chair, shove furniture around to vacuum, dust, destroy moldy sub-sandwiches left half eaten in his fridge, wash windows, hang scented air fresheners. He prefers canned chicken soup to my homemade variety, frozen lasagna to home baked, bottled spaghetti sauce to slow-simmered fresh tomatoes and spices and meatballs. He likes Kraft mac and cheese, apples on occasion, cottage cheese, melted cheddar on bagels.

Annie Dillard wrote, “How we spend our days is, of course, how we spend our lives.” I spend days stuck in grief berating myself for my worries, my wasting of time staring out windows drawing imaginary lines with my index finger on teak table tops, trying to find hope in the face of hopelessness, trying to stay useful. Making-believe life has happy endings, trying to make a life.

I am in Zeke’s apartment for the afternoon. The two of us are watching Charlotte’s Web, sipping sodas; he is laying on the couch, his feet in my lap, socks off, home from his twenty-third or forty-eighth, I can’t remember, paracentisis procedure this morning at the local hospital where they drew off seven liters of fluid from his one-hundred-and-twenty pound frame. It is eighty degrees in his apartment and he is wrapped in a down comforter. I am rubbing his feet and ankles with peppermint cream, massaging the soles, the toes, his hands locked behind his head, his head tilted sideways watching the new flat screen TV Mike and I bought him for his birthday. Tigger is sprawled on his belly kneading his sweatshirt with clawless paws, a great white grin spreads across Zeke’s face as Charlotte writes magic words in her web to save Wilbur’s life: “Some pig.” I smile at Zeke, so grateful to have this chance to rub his feet, memorizing this moment.

Yesterday he asked if there was any information yet from his doctor about transplant options. “No, not yet,” I said. “The doctors obviously don’t think you are sick enough to be listed and isn’t that great?” He lifted his eyebrows, smiled his lips-closed grin and gave a little shrug as I wrapped my arm around his shoulder and gave him a gentle squeeze, dropped my head and silently thanked God for this day, begging for another.

Susan Jostrom holds a MFA in creative non-fiction and has published in local Montana journals and the online journal, hotmetalbridge.org. She has completed a memoir about her son’s illness that is still seeking a publisher, and is dragging her feet to get back to her unfinished novel. She currently resides in Seattle and Montana. She lives and loves living on a houseboat in Seattle but writes her best work from her 1918 cabin in Whitefish, Montana. Her husband of thirty-three years lives with her, and their son, Zeke, has recently moved in with them. You can reach her at suejostrom@mac.com.