Sunday, August 7, 2016


Due to scrutiny by parties I cannot discuss, I won't be writing (publicly) about Zachary and my grief for a while.  I do not know how long it will be until I return.

Love to everyone who has been here to read, relate and comfort me since Zachary died, and gentle hugs to every bereaved parent I know. 

Thursday, July 7, 2016

Two and 1/2

Today you would be two and a half years old, Zachary.  Your half birthday.  Thirty months since that amazing day.   

It's the kind of day the four of us would celebrate together more subtly, quietly amazed at how much you'd grown in half a year.  If you were here. 

A special day for you, halfway to age five.  Not even a blip on anyone else's radar.  Our little secret.  If you were here. 

I miss you, love, your milestones, more than I can articulate.

C.T. and I painted these stones for you today, to add to your garden.  You are our sunshine and our heart.    


Saturday, July 2, 2016

Attempts at life

I feel my chest cave inward, a sad sigh of disillusionment, every time I hear puppy congratulations.  
As of the end of Wednesday, he'd been with us a whole day longer than Zachary's fourteen days of life.  Our time and attention is now invaded by a new creature - a pet - who shares our home. 

I already know our puppy well enough to know he is going to poop seven times a day, give or take one.  When I rescue him from his crate in the morning, he is going to do vertical, twisting spins in my arms as he licks my face and neck.  When he's tired and ready for a nap, he smacks his lips and flutters his eyelids.  His puppy fur is so soft that when he sits, his rear end slips out from under him on our wood floor.  He likes to snap at moths and do somersaults in tall patches of grass and hates the sound of the big, intimidating looking trucks that occasionally drive down our road. 

He looked up at the sky yesterday and was at once awed and terrified when he noticed a low flying airplane for the first time.  He is adorable and trouble-making and chews his toys and my hands and clothes incessantly. 

I think we may have almost as many photos of Thunder now as we do of Zachary.   And that hurts so badly. 

It feels wrong that Thunder lives, spends ordinary days with us in our home, while Zachary does not.  Maybe it sounds strange, but I feel envious (for Zachary) that our puppy gets so much of our time, so much normalcy, that he receives C.T.'s attention, some of the hugs and kisses that should have been Zachary's.  I find myself even pointlessly fantasizing about swapping the pet for the son, and dreaming it were then possible to go on with Zachary as if the last 29 miserable months never happened.

This consolation prize reality is still, still, so hard to accept.  Every new thing since Zachary's death is approached with such tremendous reluctance. 


Unlike the prior two years, and despite glacially-slow improvement in my feet, I made it to just about every one of C.T.'s baseball games this spring and early summer.  I still couldn't bring myself to sit anywhere near the bleachers, where the others parents and siblings were, so I'd set up my chair way out beyond the first or third base line.  I even cheered for C.T.'s team at the appropriate times this year, as if the outcome of the game mattered to me.  It's progress.

A few weeks ago, a mother I remember from C.T.'s kindergarten class showed up to the game with her two younger sons.  I remember her from C.T.'s kindergarten year.  We had worked on the Halloween party together in the fall of 2013 when she had a kindergartener and a preschooler.  The following fall, just seven months after Zachary died, I saw her on the first day of school, her belly about to pop with a third child.  A few months later, she was toting a stroller and a brand new baby boy in the infant carrier.  And now, here they were again - the baby boy now a full fledged toddler, in a baseball cap and running around in sandals carrying a sippy cup, his mother throwing her head back in laughter, small talking in the stands with the other moms. 

Every time I see these little humans, these mothers with new living children, produced after Zachary lived and then died, I can hardly believe my eyes.  My aimless unanswerable questions ensue...  How do these plans for children and lives materialize so effortlessly?  How do all of these little people not die?  How have they grown so big already?  Why have two of my children died, and all three of hers are living?  What is it like to feel so carefree at a baseball game, to casually banter with other parents, unencumbered by this kind of sorrow?


C.T. has joined a travel soccer club, and while we expect it will be a nice opportunity for him, I'm seriously dreading the whole getting-to-know-the-team process.  

Before try-outs in May, the coach asked us if C.T. wanted to practice with the team, to see if he could keep pace.  While B and I sat on the sidelines, watching the practice, one of the soccer moms decided to try to talk to us.  Of course, her second question, after introducing herself and asking which boy was ours, was:

So, do you have other children at home?

While I held my breath, B took the lead and gently informed her that C.T. has two brothers, both of them deceased. 

I don't know if I should have been shocked by what came out of her mouth next, but I was.

Oh, gotcha...
Do you live on the north side of town?

So, with the arrival this week of emails about the club/team social events for the summer and fall, involving families, my anxiety and panic about being part of this group has reached a crescendo.  I just don't know how to be graceful about Zachary's death... on top of B.W.'s.  I don't feel safe letting these people into even a fraction of our life, nor do I care about "socializing".     


I recall that B's (high school) senior yearbook blurb about his dreams and his future life included something like:

... I hope to get married and have three children...

I don't think he could have ever imagined it this way. 

Monday, April 25, 2016

I know that hour

There comes an hour when begging stops,
When the long interceding lips
Perceive their prayer is vain.
"Thou shalt not" is a kinder sword
Than from a disappointing God
"Disciple, call again".

Emily Dickinson, poem first published 1945

Monday, April 4, 2016

Real horror

As a young child, I had a strange recurring nightmare.

We were at the mall - my mother, my sister and me. The three of us ventured into the nurses supply store, which in itself was strange because no one in my immediate family worked in the medical field.  

The cheerful store clerk in my dream told us we should lay down and be pushed through a machine that she cranked by hand, as a conveyor belt fed that person through the covered part of a massive machine unit.  My mother laid down first, almost as if she were hypnotized to do so, and was calmly processed through the machine.  Everyone was smiling when she came out, a totally flattened, still alive, version of herself, on the other side.  My sister seemed perfectly happy to comply with the clerk's suggestion that she lay down, and to my horror, she was next to be squashed.  They held hands, my flattened mother and my flattened sister, and told me with paper doll smiles that I was next. 

I remember the dream going as far as me reluctantly laying down on the conveyor belt, before the disturbance of my own thrashing (presumably) woke me. 

My family teased me about it, because it was surely irrational, but for years I didn't like being in the vicinity of that store front.     


Just six days prior to this photo, Zachary was healthy.  Had just regained his birth weight.  Was breathing easily on his own. 

This photo was taken the day before Zachary died.  He had been suffering for more than five days, and was in a state of medical paralysis, on life support and many other life stabilizing medications, for almost three full days.

We needed a team of two to three people, usually including a respiratory therapist, to turn and prop him (and his ventilator) with blankets and towels, in a new position every few hours.  When he looked uncomfortable to me in between those times, if there was some impingement on any part of his body which might have materialized in skin breakdown or painful denting in his bloated body, I called his nurse to help me carefully move him again. 

On that Sunday morning, we were shifting Zachary around, and also trying to sponge bathe him, especially in the areas where the edema forced skin to lay on skin (where it otherwise wouldn't).  The respiratory therapist held his ventilator in place while his nurse gently rolled him to his side so that I could wash his back and neck. 

I froze, horrified beyond my pre-existing horror.  His back was flattened.  Indented, as if by a hard cover book.  It was as if a force had pressed onto him, held him there.  For days.  For weeks.  His skin was swollen, and hardened, all around the edges.

He was smashed.  My poor baby was suffering, soon to die, and now, he was flattened. 

While his nurse heaved and sighed at the sight, I wept and wept and wept, and steadied my shaking hands to wash the flattened parts of my beloved boy.  I kissed him and whispered to him again and again how sorry I was. 

I wanted to run.  I wanted to run up and down the hospital halls and scream at the top of my lungs about the torture he was enduring, about the neglect I suspected had led to such incredible suffering and such a devastating end for Zachary.  I wanted to disappear, to relinquish the responsibility I had, as his parent, to absorb all the horror unfolding upon the body and spirit of my son.  

But I couldn't run.  The next day, I'd have to be there for him as he died.  And now, every day, despite the life going on all around me, I remember and live with the horror that happened to Zachary. 

Wednesday, March 9, 2016


C.T. crawls onto my lap every morning, when he's three-quarters through his breakfast.  It became ritual after Zachary died.   

He wraps his arm around my neck to hoist himself up, one knee at a time, and situates himself sideways so that he is almost laying on me, his head under and to the left of my chin.  I cradle him awkwardly, my arms not nearly long enough to wrap all the way around his body like they used to.  At eight years old, he is so big, so long. 

He talks to me with no awareness that I'm studying him, greedily, with all of my senses.  He pops a strawberry in his mouth, and I feel his chewing, the seeds grinding, in my ear.  Bath or no bath, his hair smells so fresh and clean, I can't resist kissing him again and again.  He wraps a hand around my forearm while we talk.  He laughs and throws his head back in the crook of my arm, daring me to tickle him, mouth clad with milk moustache. 

I close my eyes and try to grasp how I might have had this with Zachary too.     


Over winter break and into the early part of January, C.T. read the fourth installment of Harry Potter, on his own.  All 734 pages. 

When he brought it home from the school library, declared he'd already read two chapters, I had no idea he'd actually get through the entire book without me.  Surely he wouldn't have the endurance.  He'd need my voice inflections, my explanation of mature themes, my help to understand tricky words and the subtleties inherent in the conversation sections.   

I made him read a chapter aloud, testing for his understanding.  Using context when he needed to, he was able to explain and understand everything.   

We read the first three books together, C.T. and I.   


C.T. reaches into the silverware drawer and pulls out four forks for the table.  He notices his mistake almost immediately.

Mom and dad, look: I wish I was setting the table for the four of us. 

Of course, sweetie.  The fourth for Zachary.  We wish too. 

After his own name, he masters Zachary's, in cursive.  I find Zachary's name written, in newly minted handwriting, all over the house, doodled on the papers C.T. brings home from school.  He loves the connecting letters, the way the Z looks a lot like a fancy 3, the fact that cursive writing is a big-kid thing.  Like us, he looks for every chance to use his brother's name.


I am crying on the way home from a ride along (with B) to pick C.T. up from a birthday party.  My nerve pain has flared up badly, and although I've been cooped up, and in desperate need of a change of scenery, I regret leaving the comfort of home.  He hands me a tissue from the back seat and tells me,

Mom, you are still doing such a good job of being a mom. 


This boy of mine - C.T. - he is so inexplicably magical. 

No one knows it, none of my stories can even begin to convey or describe it, but Zachary was equally magical. 

The world thinks what's done is done, that what and who I've lost has been accounted for. 

It is not so.  Every day, I calculate his loss.  Every day, I wonder at the growth and brilliance and unique tenderness I witnessed in that specific little person, my Zachary.  Every day, I'm bewildered at what I have, the one of the three that I can see and feel and touch, and equally bewildered by what has been stripped from me.  It would take forever to measure. 


Friday, February 19, 2016

Pile on

For the last several months, our coffee table, which displays Zachary's photo album and a book of sympathies C.T. received from his friends after his brother died, has been largely overtaken by therapy apparatus.  On the top of the table sits a tub of cream and a tool called a gua sha, which I use regularly to scrape at the scar tissue that has built up in my heels and in the arches of my feet.  Every morning, I bring one of my night splints to use on the couch, during the daytime, and I have to nudge and rearrange Zachary's books so that the splint, or one of my other therapy tools, doesn't sit on top of, and desecrate his memorials.  Beside and underneath the table is a towel for wrapping the ice packs which I use several times a day on both feet, various therapy balls for seated arch rolling, a walking boot, at least two pairs of orthotics and shoes which I switch out to use on an hourly basis, as my pain inflames and my ability to get around fluctuates.    

I have been living with chronic, often debilitating, physical pain for more than nine months, on top of the emotional trauma and grief that has been with us for over two years now since Zachary died.  What began as a troublesome case of plantar fasciitis in my feet in early May 2015 has morphed into plantar fasciosis ("osis" suggests that my tissue is beyond the acute inflammatory stage and has progressed to tissue degeneration and deterioration, in other words "failed healing") in both feet, and tarsal tunnel in my left foot.  The tarsal tunnel is even more difficult to treat and cure than the chronic plantar problem, though both can be extremely stubborn and persistent, if not permanent quality of life conditions. 

If I am weight bearing, I am in pain.   When I'm at rest, the pain continues in the form of throbbing, numbness and aching.  Every single day.  I haven't had a (physically) pain free day, or a day where I've been able to get around normally, in almost ten months.  It is a daily battle to simply walk. 

I stopped running in June 2015 because the pain was too severe.  Then, I also stopped walking with a fellow bereaved friend (who I'd been walking with twice a week) because I found I needed to limit my daily steps in order to take care of C.T. and to do a decent job of managing the household.  As the summer went on, my feet worsened and I found I could no longer stand to water Zachary and B.W.'s memorial garden.  I began sitting on a chair, full time, to watch C.T. with his friends, and resorted to a walkie-talkie system when their play led them away from our yard.  I began preparing meals and washing dishes on a stool so that I was further limiting my weight-bearing minutes.  I started asking B and C.T. for help in doing things I'd formerly taken care of with ease.  And although I finally, a year and a half after Zachary's death, had enough scraps of emotional strength to get out and do some things with C.T., I literally couldn't stand or walk long enough to do them. 

I resigned myself to long bike rides with C.T. by mid-summer.  And while it was depressing to feel so physically unable to walk, I was proud of myself for occasionally rising above the apathy of my grief, and what I hoped would be temporary physical limitations, to do things with and for my sole surviving child. 

My feet only worsened when B's dad began hospice care in the fall of 2015.  We fought hard to submerge our own Zachary-grief, and what were becoming chronic pain and mobility issues for me, for the sake of supporting and spending time with him in his last days.  By the middle of October, we had purchased a chair for the shower because I could no longer stand for the length of time it takes to get ready in the morning.  I could no longer walk C.T. to school or run an errand that would require more than ten minutes on my feet.  In November, I sat in a wheelchair while B pushed me around, for a shopping trip I knew would take a couple of hours.  When no one was around, I began to resort to crawling when my feet were particularly bad.  

My life has become a series of appointments with doctors and therapists, all of whom are supposedly trying to relieve my pain and get me on a road to healing.  I have been diagnosed to death with ultrasounds, two MRIs and a painful EMG/nerve conduction test.  I've stretched, iced, foam rolled, worn a night splint so much that I cannot imagine what life was like before I was forced to spend hours a day nursing my feet.  I had a month of physical therapy in September.  I've tried at least a dozen over the counter orthotics and then had a custom pair made in November.  I wore a walking boot, as prescribed by my doctor, for several weeks in the foot/ankle that is worse (although that seemed to only worsen the better foot).  I've been seeing two different chiropractors who have treated me with electric stimulation (sometimes submerged in water), ultrasound therapy, cold laser therapy, taping and acupuncture.  I've seen a massage therapist, for months, who has tried to work on trigger points that have been shown to link to (at least part of) this kind of chronic foot condition. 

On Monday of this week, the better of the podiatrists injected both of my heels where the plantar fascia inserts, using an ultrasound for guidance, with cortisone.  It was a move of desperation to get some incremental, temporary relief from the constant pain, even if we agree it's only masking the underlying and chronic conditions.  While the injections themselves were painful (all I could think about were the many heel sticks Zachary endured while his whole body suffered and convulsed in septic shock), he said I would be in more severe pain for the next three days while I heal from the shots.  And indeed, as I've literally crawled from the couch to the freezer to retrieve ice for the feet that feel like they've been hit with a sledgehammer, I was.  It is only today that I'm almost back to my normal level of pain in my feet..., and I guess that's not saying much. 

Nothing, to date, has made a dent in my pain or in my ability to stand or walk, and I am perpetually grimacing just to limp through each day.  It is all so demoralizing for none of this to be helping, to have no relief from the crippling pain, to not be able to walk freely, for so many months.  I am running out of non-surgical therapy options and the surgical route is fraught with risk and many stories of poor outcomes.      

I try to push through the physical pain every day, to just keep focused on coping with my grief, on using what little emotional energy I have to seek help for my feet, but I am in sobbing tears almost daily with the piling on of it all.  The pain in my feet hasn't abated in months and months.  I haven't been able to go anywhere with B and C.T. (other than to eat out where I can sit on my butt) because I simply can't walk or stand.  I must have 20 pieces of writing started, about Zachary, but the pain has me paralyzed, stunted, unable to focus and finish them.  I don't have it in me to respond thoughtfully (or at all) to emails and calls and texts.  And I have very little capacity to be there for others - not adequately for other bereaved parents, and certainly not for anyone dealing with the regular drudgeries of life. 

It feels like I am just barely hanging on.  Grieving and physically hurting is my every minute.