When my baby was born into this world, I was struck with the reality of it all. She is mine, my baby, nobody else’s. It felt like one of those reality shows when you get to play a part in someone else’s life for a while–but don’t get too comfortable, the camera crew is on its way with the annoyingly chatty host.

Our strange existence as modern women of the 21 century brought many of us to the realization that by the respectable age of 30, we rarely had a chance to handle a newborn, to change his diaper, to feed him or watch him nurse. That was me anyway, a total novice (not to say a nervous wreck). Before my baby was born I wouldn’t have wanted to hold a newborn. I was afraid to break them. I regarded every new, seemingly relaxed new mother with great admiration. “How does she do it?” I asked myself (and her, if I gathered enough nerve). They all looked like mother earth to me. Relaxed and natural.

Imagine my surprise when my turn came to play mommy. I knew newborn babies cry. Just not how much. You change them, they cry. You don’t change them, they cry. You dress them, they howl,; you undress them, it’s the end of the world as we know it. And don’t get me started with her first baths. My husband actually used his ear plugs. And these were the easy ones.

The hardest cases were those in which we had no idea why our little princess was clutching her little fists and screaming in rage, for hours at a time. She wasn’t hungry, she wasn’t wet, our home was warm and cozy and she had mommy, daddy and grandma at her disposal. She still cried. A car ride quieted her alright, just until we entered back in the house. A bath? Grandma suggested, and quickly withdrew, seeing our horrified expressions. I rocked her, kissed her, held her, and swore I would never ever touch cabbage again (thinking I caused her gas). Needless to say, I felt like a failure. Like the worst mother in the world. Where were my motherly instincts when I needed them? Wasn’t this supposed to come naturally? I felt cheated. I was supposed to just “know” what to do, right? Wrong.

Babies cry. They cry because it’s their only way of communication. They cry to let out frustrations, to get attention, to feed or to sleep. They are not named “newborns” for no reason. Babies are newcomers to our world and everything we take for granted must seem very alarming to them. Their familiar world was body-temperature warm, dark, and wet. They existed to the relaxing sounds of our hearts and our digestive systems, our well meaning voices travelling to them from far, far away. Bundled in an increasingly tightening uterus, they were lulled to sleep by our constant movement. Is it a wonder that our dry, loud, well lit, open-spaced world frightens them?

The good new is, ladies and gentleman, that it is a passing phase. Older babies do cry to communicate their needs but they also use body language, cooes and smiles. The newborn’s survival instinct to shout at the top of her lungs at the smallest inconvenience will slowly fade away, alongside the remaining shreds of her parents’ nervous system. As you tend to your baby’s every need, she learns to anticipate your care. She understands that she is not alone and that you will be there for her. As she grows accustomed to her new environment, her constant sense of urgency will disappear.

My point? You do not need to be the baby whisperer to care for your child. She learns to be a baby at the same rate you learn to be a parent. Just be there for her, and you both shall make it safely to the joys of tantrums and potty training.

Ayalla is a mother of a baby and a toddler. A retired scholar, new blogger and an aspiring writer, she lives in the far far (far) north of Quebec. Check out her blog here.

My sister set a New Year’s resolution to try to live her life as if she were 20 years older and suddenly had the chance to go back and do it all again. I have been thinking about that. I know so much more now. I would do things differently. Fifteen years ago I was 30. If I could go back and visit myself, we would sit on that old green couch that got the afternoon sun while the kids napped, and this is what I would tell myself:

• Quit worrying about what people will think. They aren’t thinking about you.
• Buying things won’t make you happy. Doing things will. Instead of buying stuff – do stuff.
• Impressive cars and fancy houses don’t make you impressive or fancy. And they won’t make people like you (see #1)
• Invite people over more. Quit worrying about if they like you (they do) or if your house is clean enough (they don’t care – see #1).
• Pray more. Pray about EVERYTHING. Like: Should we buy a car? Should I home school? How can I help my child? What can I do for my husband? Please help me to stop freaking out!
• Back WAY off the sugar. You’ll feel better. And, while you’re at it, enjoy how darling and skinny you are right now. Start appreciating how beautiful you are – you are much too hard on yourself.

Then after I gave all that advice I would tell myself just how great I was. I would point out all the things I was doing right. Then we, my 30 year old self and I, would wake the kids up from their naps and cuddle while we read books, then we would go play in the garden – pushing the kids on the swings and admiring their daring trampoline tricks.

I wouldn’t be able to stay long. I am needed here in my 44-year-old life. I would probably cry when it was time to go because I miss that time when my kids were all mine and hadn’t found the world yet.

I would hug my 30-year-old self and tell her I love her. I really do love her. And then I would tell her one last thing:

You are better than you think you are.

…………………………………….

Robin and her tall charming husband have 4 kids: child #1 is in college, child #2 should be in college (grumble), child #3 applying to college, and child #4 in 6^th grade. It’s time for her to start her Ph.D. but she’d rather open a garden center and go to cooking school. She experiences a ridiculous amount of joy when her kids brag about her cooking. She blogs at http://robinblogz.blogspot.com/.

When I was a girl my mother told me this:

“I’m glad my daughters aren’t beautiful.”

(She had four of them.)

“My daughters are interesting and smart and clever instead.”

We were sitting at a stoplight at Stapley and University.

I don’t remember where we were going.

I had heard this in little bits and pieces all my life, but somehow, maybe my age, maybe the stillness of the car, maybe the car itself as holding cell for an unwitting prisoner—this time especially, the words stung.

And penetrated deep into my soul.

My mother was always pointing out who was beautiful; not just pretty, but really beautiful:  My tall, blonde, confident aunt with high cheek bones and deep brown eyes– oh, yes, movie star beautiful; someone in my peer group at church, who was not especially nice to me–  yes, she was beautiful too;  a smattering of beautiful cousins; the whole population of Czech girls—after the return from a humanitarian trip.  The list went on.

Here’s what I knew about myself:  I had a thin long face and I didn’t look good without bangs.

My mother told me so.

(Incidentally, it was seven years and three children into my marriage before I finally threw the “no bangs” rule out the window.  I actually tried my absolute best to never let my husband see me with my bangs pulled off my forehead.  I laugh now.  What wasted energy.)

My mother is not a wretched woman.

I think in her own way, she meant for that first statement to be a compliment:  “Honey, I am so proud of the brilliant, independent, interesting person you’re becoming.  You are so much more than your beautiful face.”

But somehow, by default of my tender age, I missed that.

And maybe

no one ever told her she was beautiful.

How could I be so hideous (my words, now) and unattractive to the one person in the world who was supposed to love me best?

The explanation: It must be true.

Sometimes, now as an adult, my mother will tell me I look nice.

It’s sad–I think she really might think so; but it’s hard for me to believe it.

My poor husband, he tells me I am beautiful, and tells me all he sees when he looks into my face.  He tells me officially, now he’s “had me” longer than my parents so all those insecurities should be undone.

But scars are scars, and they run deep.

——————————————-

So, in my mothering, maybe I’ve gone overboard in the opposite direction.

I think my children are beautiful, and I tell them every chance I get.

Truly, they are more than likely to hear it at least once a day.

Am I raising delusional, stuck-up children, full of pride and conceit?

(If you knew my children, I think you would say not.)

They have their insecurities and doubts just like everyone else.

Am I raising children who are focused more on looks rather than character, integrity and intelligence?

(If you knew my children, I think you would say not.)

Am I raising children who are disproportionally preoccupied with the way that others see them, rather than how they see themselves?

(If you knew my children, I think you would say not.)

Maybe the key is not comparing their faces to anyone else’s.

It’s not about my favorite color of eyes, or a nose that is just so, or my preference to a particular shape of face, or the wave or texture of their hair.  It’s not about telling them that I think they are more beautiful than their friends.

It’s the smile that melts my heart that is beautiful; the one with the chapped lips and crooked teeth, or the deep dimple right in the middle of their cheek.  I tell them that is beautiful to me.

It’s the twinkle in their eyes as they tell me a funny anecdote; the depth in their eyes as they share a concern; the kindness in their eyes as they help someone and don’t even know I’m watching; the way the light hits their eyes and makes them sparkle like a thousand stars when they tell me about something good that happened to them that day.  I tell them that is beautiful to me.

It’s the way their brow furrows in concentration, or the faraway look of a great ponder, or an amused smile at that really funny part in the book—so absorbed in the reading that they are oblivious to having an audience.  I tell them that is beautiful to me.

It’s the way their eyelashes lay in a shadowy smudge across their cheeks when they close their eyes to pray, or when they’ve fallen asleep.  How that one lock of hair keeps finding its way to a troublesome spot and requires an absent-minded, automatic brush of the hand…

They watch me drink in every last inch of their faces, and they know that I love what I see—because I tell them so.

Sometimes I worry.  Have I told them they are beautiful too much?

Due to circumstances not of our choosing, four years ago, we plucked them up from comfort and familiarity, and set them down in a place that was more than a little prickly and cold, and culturally different from anything they had ever been exposed to.  Welcome to a taste of the refiner’s fire, my babies.

It has been full of challenges, culture shock and loneliness.

But children are incredible.

They survive.

I am so amazed at their strength and courage and resilience.

And if the knowledge that their mama thinks they are beautiful has helped to weather these early thunder storms of life, if the knowledge that their mama thinks they’re beautiful has given them the quiet confidence to get back up when they are pushed down, if the knowledge that their mama thinks they’re beautiful helps them on their journey to discovering who they are and all they can accomplish,

then I’m happy to have given it.

And I’m glad it was something I said.

Jenny lives on the east coast with her husband and five terrific kids. Her children say: “she cooks good food, and takes too many pictures.” She likes to eat food that other people cook (preferably, people in restaurants), take pictures, write, shop, spend time with family and to be on vacation. She can be reached at jenny.mom2five@gmail.com.

I’m delighted to be able to share the parenting wisdom of one of my favorite writers, researcher and social worker Brené Brown, here on Letters to a Parent. If you haven’t found her site yet, set aside some time, click over, and prepare for a treat. This post is especially appropriate this week as we put away our holiday trinkets & relaxed schedules and return to our routines at school, work, and home. Enjoy! {And thanks, Brené!}

* * *

In January, Ellen and I ran into Nordstrom so I could pick up some make-up. While we were there, we decided to check out the sale in the children’s shoe department. I had on my workout clothes and was looking pretty ragged. When we got to the shoe department, there were three moms picking out shoes while their young daughters tried on boots and sneakers. These women were stunning and their daughters were equally beautiful.

As I tried to stay out of the swampland of comparison, I saw a strange blur of jerky movement out of the corner of my eye. It was Ellen. They were playing a pop song in the neighboring children’s department and Ellen was dancing. Or, to be more specific, she was doing the robot.

At the very moment that Ellen looked up and saw me watching her, I saw the magnificent moms and their matching daughters staring right at Ellen. They looked horrified. Ellen froze. Still bent over with her arms in rigid formation, she looked up at me with these eyes that said, “What do I do, Mom?”

I remember thinking, “Break the cycle! Be on her side.”

I grew up with a suffocating fear of not being cool enough and not belonging. I grew up with a gut-wrenching fear of this moment. My default would be to shoot a look at Ellen that said, “Don’t be so uncool.”

I glanced up at the mothers, then I looked at Ellen. I reached down into my courage, as far as I go, and I smiled. “You need to add the scarecrow to your moves.”  I let my wrist and hand dangle from my extended arm, then I pretended to bat my forearm around. Ellen and I stood in the middle of the shoe department and practiced our moves until the song was over.

Back-to-school is always emotional around our house. Today was Ellen’s first day of class and my first day of class. This morning, she walked up to me in the kitchen and looked at me with those same eyes. The eyes that say, “No matter what happens, I believe what you tell me about myself. Can you put your own fears away long enough to make me feel safe? Can you tell me I belong here – no matter what?”

She said, “I’m scared. Are you scared?”  I said yes. Then, I went into my bedroom and got my incredible superhero necklaces. I put one on her and the other on me. I told her, “My friend Andrea says that we are our own superheros. I believe her. Let’s practice that today.”

I was able to snap a picture of Ellen in her superhero necklace, but I had to get in my car to get a picture of my necklace (talking about goofy).

We both did OK today. We’re both tired and emotionally exhausted, but we have just enough energy left to bust-a-move.

“Try to see your child as a seed that came in a packet without a label.  Your job is to provide the right environment and nutrients and to pull the weeds. You can’t decide what kind of flower you’ll get or in which season it will bloom”

~Anonymous, as quoted in The Blessing of a Skinned Knee, by Wendy Mogel

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.”

Today I was talking with a friend.  She mentioned that when she was growing up she loved finding little notes to her from her stepmother, J–in her lunch box, in a box of cereal, inside her backpack. J worked full time as a professor and this was one way of connecting with her kids when she couldn’t be there.  For my friend, the lasting memory was that moment of glee, in finding something unexpected from someone who so completely loved her and told her so often.

Recently J received a cancer diagnosis, a blow to their family world. My friend has decided (in addition to giving support with rides and visits and food) to sneak into J’s house and leave notes in her cereal box, makeup case, purse. To give her that moment of glee in finding something unexpected from someone who so completely loves her.  Full circle, now.

It reminded me of an article I chanced upon in Esopus magazine (via Ali Edwards) about a dad who wrote daily letters to his two children. According to the Esopus 10 website, “exhibition designer Robert Guest has been getting up at dawn every school day for the past 15 years to write a note to each of his two children, Joanna and Theo. Included in Esopus 10 is a sampling of the thousands of letters written by Guest and collected by his wife, Gloria, from lunchboxes and laundry piles.”   Here’s the text from one of them (above left):

“The world Joanna–you can’t imagine how beautiful it really is.  Think of the different places–tropical islands, snow-capped mountains, deserts of sand, miles and miles of green fields.  It’s awesome! Think of the kinds of weather–bitter cold – blinding sun – stormy wind and rain – cool breezes – warm winds.  It’s awesome! Think of the people in the world –black & brown, yellow and red, and white – old, young and babies of each.  It’s awesome! And just think. You get to be here in the middle of it all. So what do you do? You smile, you say “thanks” and you live!  Love, Dad”

Every once in a while, I come across an idea that makes me wish I could go back and start parenting all over again.  Looking through a couple of these letters, this is one of those ideas (click on the above photo to get a closer look).  What I love about these is that they aren’t just about his love for the children (which of course is important) but it’s also about sharing his thoughts and perspectives about the world and life.

Luckily, it’s not too late to write something, even if it’s not the fantastic, letter-a-day idea.  Maybe starting with notes or drawings on napkins.  Or a yearly letter.  Or a shared notebook to exchange thoughts we might not be able to say face-to-face.  Or a post-it.

Here’s what I believe: Writing it down has power and longevity, more than the earnest lectures on responsibility or the new shiny birthday bike. Those tucked messages to our kids eventually nestle in pockets and fists and musty shoeboxes carried from home to apartment and home again to be pulled out and remembered.  Or at least that’s what I do with mine.

Summer is slowly winding down around here and my thoughts are turning back to Letters to a Parent. I am excited to hear from the next batch of wonderful letter writers and hope you’ll join us here starting in September.  

In the meantime, head over to This I Believe for some lovely essays to buoy your parenting spirits.  They’re currently featuring a handful of essays about beliefs handed from parents to children.

I especially loved the ones about silly dances + being yourself, leaving the kitchen light on, and integrity. Click on over for some inspiring reads.

I have spent countless days in hospitals: Someone checks you in, you fill out papers, they take copies, you wait. Someone else rolls your son in a wheelchair down the wide corridor, past the grand piano where elderly volunteers play “Let Me Call You Sweetheart” or “Five Foot Two” or “Amazing Grace,” up the elevator to a private room on the sixth floor where you’ve been before. You follow behind, making small talk and smiling, packing the necessary equipment – cell phone, laptop and an unread book – you will need to stay occupied while you wait. And wait. You wait for blood tests and x-rays and doctor visits while you play with your cell phone downloading worthless ring tones and pictures of purple mountains you will never look at again. You watch the black shadows move down the concrete walls on the buildings outside the window. You rub your son’s palm with your index finger, the way you did when he was a baby. You try to read, but your eyes blur. You fill up the room with balloons from the gift shop, because no one even knows that your son is in the hospital, again, and no one sends balloons or stops by or calls. So you fill in the space.

It’s May, 2004. My son, Zeke, is in the hospital this time for a heart transplant evaluation. I try to act confident and cheerful and ask appropriate, intelligent questions of the doctors and social workers from the transplant team or the nurses who visit Zeke’s room unannounced, twenty-four hours a day. When a doctor says he will be in to see you in the morning, it may be noon, or it may be evening, or it may be tomorrow morning, or he may have come while you stepped out for ten minutes to bring up a tray of tomato soup and iceberg lettuce from the basement cafeteria and you missed him but no matter because he will be back tomorrow, or maybe not, and the nurse will contact him, or maybe not. And then, after two heart catheterizations because one is not good enough, they finally have some results to share and a treatment plan and the results are all bad and they have no plan because there are no real options and they tell you your son has “a year-and-a-half to two years to live” unless he has a heart transplant.

Blood work reveals he has Hepatitis C (this is a new thing!) no doubt from past blood transfusions, probably cirrhosis of the liver from the Hepatitis, and his lung functions are extremely poor (you knew that) and consequently he may not be a candidate for a transplant and the transplant team quits visiting; they will change his medications and send you home – and discuss him in conference next week and let you know. And they tell you that he has “reached the normal life span of a child with a heart condition like this” and they tell you again that there are really no good options and his pacemaker is not working right and his mitral valve is leaking but they are not certain it would be worth the risk to open his chest again to fix those minor problems.

I sit and smile at the doctors with my lips closed and I purse my lips wisely and nod my head and laugh a lot and I try to find something to be hopeful for because Zeke is sitting in the room with me and I need to always act brave and optimistic for him because I am still the mother and he still leans on me, a lot. I squeeze my eyes and don’t let one little teeny drip escape because I know there are gallons more where those come from and I have learned after countless hours curled up on bathroom floors sobbing: There is no such thing as a good cry.

I was twenty-four when Zeke was born. Young and naïve about everything, but who knew about birth defects? When people asked if I was hoping for a boy or a girl I replied, “Oh, it doesn’t matter, as long as it’s healthy.” That was in 1978, prior to testing to determine the sex or complications before a baby was born. Zeke had his first heart surgery at three days old.

He was a “blue baby,” doctors said, born with a missing ventricle: a three-chambered, scrambled heart. Tricuspid Atresia, the official diagnosis, means the tricuspid valve never opened and consequently the lower right chamber never formed. Mike and I stared at the cardiologist who gave us the diagnosis. “So this is serious?” I asked wide-eyed. “Very serious,” he said.

A five-pound, ten-ounce infant. The surgeon operated on Zeke under a microscope. They didn’t have a corrective procedure for Zeke’s defect so the team of surgeons created a shunt; they re-routed the main artery to the right arm into the lungs to provide more oxygen to the blood. The cardiologist came out mid-procedure and told Mike and me they didn’t expect Zeke to survive. I folded my arms across my chest and looked at the floor. The vessel they were trying to sew into was “like wet tissue paper” as the doctor described it, and would collapse if they attempted to suture it. “We’re standing around meditating,” he said.

I locked myself into the waiting room bathroom and did my own meditating – forehead flattened into the mirror, my hands stripping milk from my swollen breasts into the porcelain sink, the antiseptic soap smell making me nauseous. My legs buckled and I slumped to the linoleum floor, head held on my knees, sobbing in silent gasps, praying – no, demanding – that my baby survive. “I want this baby,” I told God. “Please, please, please, please, please,” like a child begging for candy at the grocery store.

Eight hours later a nurse ushered Mike and me into the neo-natal intensive care unit. “Scrub your hands to your elbows for a minute,” she told us softly, then led us to a tiny, naked infant, arms and legs outstretched and strapped to a table, warming lights blaring over his head. The baby was crying but not making a sound – a breathing tube was stuffed down his throat. “My God,” I thought at first glance, “that’s somebody’s baby.”

We ate and slept at the hospital. At night we spread out a thin piece of foam on the waiting room floor and buried ourselves in the white cotton blanket the nurses provided. In the morning we rolled up our meager bedding and wadded it into a closet.

Four weeks later we walked out the hospital door, Zeke cradled in my arms. We took the first picture of his sleeping face swaddled in a blue flannel blanket. If Zeke was a cat, he had lost his first life. The morning we finally emerged from the hospital, fall met us at the door. The air was blue and crisp, the sumac brilliant orange and yellow, red maples glowed gold in the sun; what a welcome to the land of the living. I took off my shoes and let the dew-covered grass cushion my feet. I have rarely felt more alive.

{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.