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.  

 

Funeral anniversary

Every week, since your funeral two years ago, your daddy brings home flowers in your memory.  It is our ritual to choose a vase and place your flowers on the dining room table, which we may as well refer to as Zachary's table because we have not used it for its intended purpose in over two years.  I am not sure we will ever feel ready to not buy you flowers each week, to use the table for something other than a memorial to you.  

We miss you so much, love.

The day before

It was the last afternoon of his prior innocence. 

Two years ago today, C.T. proudly introduced his baby brother to two of his cousins.  At one point during their hospital visit, C.T. reached over to stroke his brother's paralyzed body and confidently used the words, ...when Zachy comes home... 

He had gotten comfortable with the idea that his brother was here to stay.       

The adults in the room knew that barring a miracle, despite Zachary's excellent prognosis and glorious first week of life, and despite the fact that he was well beyond the most critical period of sepsis, Zachary was never, not ever, coming home. 

B and I were still in shock and denial ourselves, and somehow we had to break the horrific news of Zachary's brain hemorrhage to C.T. that night.  We knew, in just a matter of hours, we'd destroy his world by explaining that his baby brother would die the very next day.  There was no guide book, no way to make sense of any of it, no way to soften the blow for him. 

***      

By that Sunday, the 19th of January, we'd heard and explored all of the professional opinions.  We knew the resounding guidance was to remove Zachary's life support.  But, even as we were planning for the end of his life, I remember pleading with God to spare Zachary. 

I told God I couldn't bear the burden of another dead son, that I'd die, or go insane and be unable to care for C.T.  I told Him Zachary deserved to live, that he'd come through too much senseless suffering to be taken from us now.  I received emails and messages from people who were praying for a miracle for Zachary, some of them linking me to real life miracle stories, as if we were just one prayer away from having our own.  Believe.  Don't lose hope, they said.  The impulse for me was to beg.  In helpless, looping, desperate denial, I was secretly determined for God to hear me and save my son.  

***  

I sat down with one of the neonatologists that day and, even after we'd agreed to the recommendation, I asked her to explain everything all over again.  What happened to my perfect baby?  How did it get this bad?  Can we look again at all three brain scans to confirm what we'd been told?  Are we sure we shouldn't try something else, something more, to save him? 

The doctor first reiterated that they had already begun dismantling critical (long-term) life-sustaining aspects of Zachary's care, in preparation for the next day, when we planned to remove his life support.  Then, after listening to her describe, in detail, the universally traumatic effect of his brain hemorrhage and his grave prognosis, she said the most excruciating words.      

If we keep him alive and he survives at all, for any length of time, Zachary will probably never know who you are.  He will never know you are his parents and that you love him. 

Those words will haunt me for the rest of my days.     

 

Letter on your second birthday

My Dearest Zachary,

My reflexes tell me to hold, to kiss, to tell you how proud I am, to shower you with my love and all of your favorite things today, on your second birthday.  But, almost nothing that feels maternal and instinctual about celebrating your birthday today is actually possible, Zachary. 

We had the wondrous day of your birth, which burst with happiness and the promise of a full life for you.  It was the one and only happy birthday we will ever have with you, my love.   

C.T. has been anticipating your second birthday for days now, sleeping every night with all three of his giraffes.  When he was supposed to be getting ready for school this morning, I found him huddled in a 14 x14 inch space between his bedroom bookcase and the corner of the wall, hugging his softest giraffe.  This is what he prefers to do with his sorrow now.  He finds a stuffed animal and a hiding place, and grieves and misses you quietly, all by himself. 

When I gently coaxed him out, comforted him, he asked me which dinosaur I thought would have been your favorite.  He didn't give me but a few seconds to consider it, and instead answered for me,

Zachary was so tough.  Don't you think he'd love the Ankylosaurus? 

You are in C.T.'s heart through and through.   

None of us really know what to do with our overflowing love and our aching grief on a day like today.  It is still difficult to comprehend and accept.  So, we muddle through, we create another painfully numbing set of birthday memorial traditions - traditions none of us ever anticipated would replace the celebrations we expected to have with you, but which we hope will fractionally honor your life. 

We packed meals again, with some of your family, for children living in impoverished countries.  In total, today's food packing session yielded over 53,000 meals.   

We sang a sad happy birthday, had cake and lit the first of fourteen days of luminaries, in your memory, at the front of our house.

I also decided I would acknowledge all of the precious children I know (or know of through their bereaved parents) who have died.  I lit your candle and spoke their names aloud, 39 of them in all.  While their parents may often feel as if their child is forgotten, I wanted to use part of your day to remember each of them, individually. 

***

I know how delightfully alive two might have been, with you here, Zachary.  I know how proudly you'd have shown us "2" with your fingers, for the camera.  I know how special it would have been for C.T. to dote on you, to help you open and play with your gifts.  I can almost imagine the memories we should have made on this day, and in the last one year and 50 weeks, with your amazing spirit filling our home and our lives.  

It is overwhelming to think about just how much has been lost.   

Despite the anguish of your absence, I will never forget the spectacular day of your birth.  I will never forget seeing and then holding you for the first time at 4:22 p.m, two years ago. Your birth, your cry, your eyes, truly lit my world ablaze with pride and joy. 

I miss you so much, Zachary, and I love you as much as a mother can love.

Mommy

Last happy New Years Eve

On this day two years ago, we were celebrating your nana's birthday with pizza and family. 

Twenty-two days later, after you lived your entire life and left us throbbing in brokenness, I sat in a department store dressing room, staring blankly at a selection of funeral dresses and layette sets for the display of your body in the casket. 

I still cannot reconcile the before and the after, what happened to you in between those days. 

In between the New Years Eve birthday celebration and the dressing room scene, I lived a whole other life with you.  I think it must have been the most important and meaningful living I've ever done.  And now, it's over and done.

I hope you knew and felt my love, Zachary.  It means everything to me. 

This day will forever punctuate the beginning of so much fear, then pure joy and elation at your birth and health, and finally, a reprehensible series of errors that robbed you of your entire future.  I'm so sorry. 

Christmas without you

Last week, I sat shoulder to shoulder beside a mother whose arms were full of curly haired two year old.  The audience had been asked to squeeze in closer together to accommodate more show goers to the school's winter music performance, and somehow I got lodged between her and your dad.  She tried to make small talk with me and, well,... even the most surface chit-chat quickly leads to you, my love.   

My stomach churned to be forced to casually answer the dreaded question aloud, to lump you in with the dead, with your brother B.W.  It is still so wholly absurd, so wrong, that you are not here with us.   

The woman's toddler son bounced in her lap, his excitement bubbling over, when one of his sisters took the stage.  His mother shushed him gently as he pointed and called out her name.  The little boy seemed to be in awe of his sister while his mother beamed with pride.    

We ought to have had moments like that one, Zachary.   

It is our second Christmas since you died, and it is still so disorienting. 

Familiar holiday traditions, the excitement with which we used to approach them, seems to have been shattered right along with your perfect little body, almost two years ago.  Again, I could not bring myself to pull out the old artificial Christmas tree, the lights, the collection of ornaments, the myriad decorations, the playlist of Christmas music - all of the things that used to mean something to us.  Again, I couldn't bear to resurrect the tree in memory of your brother, or even any of his old ornaments; the implication that we add another memorial tree for you, our other dead son.  All of the old accoutrements to Christmas just feel like a sham, like they belong to another family, not ours.  

Participating in the "Christmas spirit" (not to be confused with celebrating the actual meaning and spirit of the historical first Christmas) feels foreign to me now.  I don't recognize it.  I don't understand it.  But, for C.T.'s sake, because he is still influenced by the stuff of Christmas, and by the enthusiasm of his friends and classmates around the holiday, we did buy a small live tree this year.  We delayed and delayed until a little over a week ago when the pickings were slim, so it is truly a sad, needle-dropping, specimen.  The tree is decorated mostly with handmade/hand-painted ornaments in your memory, a few new ones in memory of B.W. and of course, some crafty ornaments made by C.T.  This seems to be the only way I can tolerate a Christmas tree, something remotely festive, in our home. 

Christmas would be so different if you were here, Zachary.  I look at photos of C.T. on his second Christmas, when he was almost two years old, and I'm desperate to know, to concoct, to connect your 14-day life with, who you would have been on this day, in 2015.  

Like a fool, I keep wondering, pining. 

I love you and miss you.  On Christmas.  Every day. 

"Doing" the holidays

Stay away from me
with your twinkling lights
your jingle bells
your festive decorations.
Tone down your
giddy anticipation that
has virtually nothing to do with
marking the birth of Jesus,
and more to do with a couple days
off of work, the loop of carols
you can't stop humming,
how irresistibly cheerful the house looks
sprinkled with red and green. 

It is certainly not
the most wonderful time of the year. 

Doesn't my once healthy son
writhing in pain,
misdiagnosed,
treated unforgivably late,
bruised - to death - from the inside out,
make any difference?
How can the same old
holiday rituals make sense
ever again?

I can never go back.
I don't know what to do with Christmas.          

He would be twenty-three months old today.
In one month, we would be
celebrating his second birthday.
I should be planning my boy's 
birthday party.