Grace, Courage, and Dignity

It has taken me an entire year to digest the events that unfolded over the days from Trevor’s ninth birthday party up until Debbie’s passing on July 8th, 2012.  It was an extraordinary eight days, the most amazing spiritual experience I have ever had, and it is a story that needs told, that needs shared.  That is why I started this blog, because these big issues, life and death and all meaning in between – they are easier to bear when shared.

Time has diffused and distilled this account – it was too raw to even be touched at first, but it has cooled to the right time.  I don’t know how time and fading memory have shaped this account and I know that others who shared in this incredible week will remember things a bit different, but this is what has remained with my heart, where it matters.

And this is my account – I strongly encourage others who remember this week to post their thoughts, their feelings, what remains in their hearts today.  “Grief shared is grief lessened”, that is why I am writing and sharing, and this blog has been a tremendous healing tool for me; I have found a voice I didn’t know I had.

Please add your voice, your perspective, your tale, and we can all remember and perhaps even rejoice, grieve and heal and, most importantly, honor Debbie, who taught us all so much…

Debbie Last

Can you hear me crying?
I’m right here, my love
The unknown is frightening
I’m right here, my love
Worlds far apart can’t separate us
And I can hear you crying
I’m right here, my love

July 2, 2012 – 5:30 am – Good lord it’s still dark, the first hints of gray are just now on the horizon, and the birds haven’t even started singing yet; why is Deb waking me up now?   I know we have a big day planned; it is my first non-duty vacation day of the year, despite the year being half over, and we are both exhausted from hosting a 9th birthday party the day before for little Trevor, so we agreed to sleep in a bit today.

And we both went to bed excited about our plans – a celebratory chocolate chip pancake breakfast at Pamela’s in the Strip, followed by some shopping and then an afternoon Pirates game at PNC Park.  We have never been to Pamela’s, and life was way too busy this month; we didn’t get a chance to properly celebrate Deb’s 45th birthday on June 5th or our 19th wedding anniversary on June 12th, so today is to be a catch up day.  Debbie always enjoyed the simple things in life, and wanted just a pancake breakfast with her boys for her birthday and anniversary.

But Deb is not excited about the world famous greasy cakes now.  In fact, something is wrong, terribly wrong.  She has been up a while, it is obvious she is upset, and has been crying; she has a bag packed.  A dark foreboding comes over me, as if the day should be getting darker, not lighter.  “We need to go to the hospital” Deb says, her voice cracking, trying desperately to be strong.  But her bottom lip quivers, betraying her fear…

Deb’s cancer went Stage IV in August of 2011.  I study statistics, study the odds, study the studies; I knew immediately what that really meant.  I knew there was only a 20 percent chance she would survive two years, less than 10 percent chance for five; especially since the cancer had spread to her liver.  The day in August when she received the Stage IV news, when she showed up at the batting cages where Trevor and I were working to rectify his batting slump, when I saw that look of terror on her face – that day will remain one of the worst days of my life.

But Deb is a fighter, she is so strong, she has an incredible faith and she has an army of prayer warriors, and the best doctors in the state are on her side.  She is consulting with a nutritionist and drinking green tea and green veggie shakes and seeing an energy healer and visiting the old sacred places in the high New Mexico desert with her good friend, and has been to the world’s best MD Anderson Cancer Clinic in Houston – she is doing everything she can to fight, and she is doing everything right.  Surely she will be the one to beat those small odds if anyone can…

But the news at the hospital is not good; I don’t need to be told, it is etched in the furrowed brows and slightly hushed tones and more gentle mannerisms that the harried hospital staff and caregivers display around us that is more telling than anything they say.

And Deb’s belly.  Since April it has started to swell; it was not very noticeable at first, a muffin top that too many American girls sport now anyway, but completely out of the ordinary to someone who rocked a six pack abdomen her whole life up until kid number two.  By the time of Trevor’s party, Deb had taken to wearing a sweatshirt tied around her waist to hide the bump, which was now in the 3-4 months pregnant size.  I wonder if the party guests understood why she was wearing a sweatshirt around her waist when it was 90 degrees and sweltering outside…

But of course that is how Deb is – she is very prideful about her appearance, the good pride, the kind that comes from hard work and appreciating all that she has in her life and the pride that comes from doing a good job, from doing the right thing, including taking care of your appearance.  Even when you have cancer.  Even when your hair falls out four times through chemo.  Even when you are really, really sick, but you want the all the attention of the day to be focused on your beautiful little nine year-old and you want him to have the best birthday party ever, as every one of his birthdays has been.

The news that Deb is in the hospital shocks most people.  Again, on the outside, her sunny ever present smile and pleasant disposition never even remotely hinted at her internal turmoil.  And so to see her in a hospital bed, connected to IVs and in a hospital gown and now mostly wearing her pink coyote hat, this is not the image that most expect when they stop up to the hospital.  And her belly, it has now swelled to 7 months pregnant…

Of course there is a battery of tests, lots of confusing information, and Deb’s regular doctor is out of the country on vacation, adding to the mess.  There are people in and out of the tiny little hospital room, it is always crowded, and people close to Deb have come in from out of town.  It is chaotic, and everyone struggles to make sense of how this can be happening, here, now, right now, when just a couple of days ago we were all laughing and celebrating and everything was fine.

I can only speak for my own struggles to come to grips with it, and I am sure everyone was at a different place on the spectrum during this time.  But at first it is a very detached scene, surreal, with a dreamlike quality, slipping in and out of focus and in between hope and despair.  And at this point the prevailing expectation is that things will get better for a while and Deb will come home.

But that is not what I feel now, a couple of days later, and not what I sense from Deb.  Her belly is huge now, 9 months pregnant.  Her vitals are still okay, so I go home to sleep (okay, to rest, sleep is very difficult) the first two nights she is in the hospital.  And that is another surreal experience, pedaling my bike home from the hospital at dusk because I have lost my driving privileges at the most inopportune time that could ever be imagined.

I am pedaling hard, making my heart beat harder just to know its still there, making myself sweat, making myself breathe faster to quickly get rid of the toxins, trying desperately to come to grips with what is happening so fast, trying to come to grips with everything that I knew would one day come but until it is actually upon you, you cannot even imagine how you will react, trying to out-pedal my fears, which are roaring like the giant trucks on the highway right behind me, ready to overtake me, ready to flatten this crazy guy riding a bike along the highway in the dark now.  They are just so much bigger, so much faster, than I can ever be…

Can you taste my kiss?
I’m right here, my love
I wish life was endless
I’m right here, my love
But living costs something and pay it we must
But I will keep your kiss
I’m right here, my love

There is a sense of calm that begins to emerge out of the chaos the next day, believe it or not.  Do not think this is an easy calm, for we are discussing topics that are life’s hardest – palliative care versus hospice, more aggressive chemo or none at all, whether to install a drain to relieve the swelling, which is now 10 months overdue pregnant.  One would think the chaos would escalate, but it does not.  It is a duty calm; it is important.  And it is calm because Debbie is so calm.

Certainly she understands the gravity of the situation.  In a rare private moment Deb confides in me that she knew way back in April that she was getting worse and would not be recovering.  In the time since then she has continued her heroic fight, but she has also worked with God and herself on acceptance.  She is truly not afraid.  It is clear now, with her calm amidst all this chaos, that acceptance and peace have been earned.  I am amazed and humbled, but keep it to myself.  Others who know and love Deb are not ready for this yet.

But she declares it with a grace and courage and conviction that can only come from having truly made her peace when the doctor tells her that there is nothing more that can be done, and that she is dying, and that it is only a matter of time.  Debbie stares at the doctor, her belly bloated but her smile still there, and with the utmost calm and conviction, tells him that “that’s okay, because I am alive now, and it’s beautiful  Life is beautiful.”  My mom and I, the only others in the room with Debbie and the doctor, are stunned and blessed at the same time…

Debbie doesn’t see the behind the scenes discussions amongst the family with the doctors and staff; things are just happening too fast, the news and the numbers are incomprehensible.  The hurt and the anger and the confusion is palpable.  We have the discussions again, because these are hard issues.  The oncologist is blunt and curt, directly to the point, perhaps because he is not Debbie’s normal doctor and hasn’t fallen under the spell of her smile, or perhaps because he has studied the charts and the numbers and the options and is staring right back at the insurmountable wall that modern medicine cannot climb when faced with cancer at this point.  But other hospital staff exhibit extraordinary patience and caring; I recognize that they do their jobs with love, and I am thankful, it is one less burden that we have to bear.

Since it is a holiday today, most people go home for the night, including the boys, who are well taken care of by my brother- and sister-in-law.  Only Deb’s parents and her sister Diane and I remain at the hospital.  It is clear to Diane and I now that we will need to stay at the hospital for as long as Deb is here.

It is the Fourth of July.  We roll Deb into the family room in a wheelchair, her belly huge, her discomfort felt by all of us, but mostly by Deb.  She does not complain however, but her smile is forced, and it doesn’t appear often now, usurped by the pain.  Two walls of the corner room are windows, allowing for a panoramic view, and the room is ours tonight, no one else around.  The hospital is quiet on the holiday, too quiet, visitors reduced to only those most directly affected by their loved ones illnesses and a skeleton crew.  We attempt small talk, but it is hollow.

There is a weird silence that fills the room.  Fireworks are exploding all around us, far off on the horizon, like watching a battle from the command center, far removed from the carnage.  Normally this would be a joyous time, celebrating the birth of our nation and summer and fun, feeling the thunder rumbling through bones and the seeing the lightning flashes reflected in wide open eyes, sharing ohhhs and ahhhs.  But not tonight; there is a heaviness in the room as thick as the fireworks smoke that certainly fills the air.  It is a silent movie, and the fireworks are not real tonight.  No body-thumping thunder, no smell of acrid smoke, no lightning flashes that light up the sky with excitement; just a sterile empty hospital room.  We watch detached, as if in a bad dream.  Deb asks to go back to her room…

Can you feel me tremble?
I’m right here, my love
Does it feel like you remember?
I’m right here my love
The future’s assured in the pulse of our blood
I can feel you tremble
I’m right here, my love

It is a bad night.  Deb is in serious discomfort and pain, drifting in and out of consciousness like the waves of a bad fever.  She needs help going to the bathroom and is tangled in tubes and IV drips and ill-fitting hospital gowns.  But Diane and I attend to her every need, keeping her as comfortable as we can.  There is very little rest for any of us.

It is agreed that a drain will be installed into Deb’s belly in the morning.  And when the procedure is done it does do a world of good, relieving the pressure and the discomfort Deb has been feeling the past few days.  It relieves pressure on us, too – her swollenness was to the point where we cringed to look at her, wondering how she could possible bear this burden.  Of course she is back to smiling her pretty smile, even with tubes protruding and the overall situation unchanged.  We are able to talk with her again without the obvious pain that she tried to hide but that her slight grimace and lack of smile gave away.  It is a small gift, and allows everyone, mostly Deb, to rest a bit.

But we are clearly not out of the woods, and everyone is unsure what to do next, and there is a permanent surrealness that has settled in, especially for Diane and I, as we have not slept in days now.  Visitors come and go, and Deb comes and goes too, drifting in and out of consciousness, and our reality ebbs and flows between the adrenaline which is keeping us on our feet and the bone-tired physical drowsiness that is constantly trying to drag us down to unconsciousness.

The nights are the worst.  Diane and I take hour and a half shifts, trying to grab cat naps in the public lounge in between sitting in the uncomfortable chairs next to Deb in her too small room, stuffed to the gills with the plethora of medical equipment, and the bright flowers and gifts have taken a back seat to the seriousness of the situation.  In the lounge the periodic screams of suffering from another older cancer patient pierce the normal beeps and blips and alarms of hospital equipment, and in full consciousness it would create an atmosphere of foreboding.  And perhaps the screams register somewhere in our foggy brains, but mostly they have been reduced to the background noise that lulls us to sleep for 45 minutes at a time. Diane no longer even hears the screams.

But we take care of Deb.  We get her to the bathroom while she can, clean her messes when she can’t, always keeping her pink coyote hat on her head when she tries to pull it off in her moaning delirium, mindfully and respecting her hard earned pride.  We sit by her as she weaves in and out of a coma, the cancer and the drugs suspending her halfway between life and death.

She always knows someone is near her.  And in the daylight her extended family and friends take on the same roll.  She is surrounded at all times by love, and is comforted as best we can, even if her semi-coma lends doubt as to whether she knows we are there.

And it is an honor to take care of her, a true honor.  I have watched others take care of people who are dying, wondering where in God’s name does the strength come from to do so?  I was just a teenager when I watched my mother take care of my father as he struggled with this same evil disease, as the cancer racked his body and robbed him of his pride and whittled him down to 80 pounds of bones and bedsores.  And I watched Debbie nurse our cat Mickey through his last two weeks, tenderly changing blood-stained furry bandages and making him as comfortable as possible.

Now I understand, I know where the strength comes from.  What I didn’t understand before is that this strength is a gift, a gift from those who are dying, a gift from God, a gift to the caretakers.  And there is incredible beauty in serving those who can no longer help themselves, and this beauty outshines the mess.  Diane agrees with this, and we talk extensively about this later, and it is a lessen that we will both keep close to our hearts, and it is a bond that Diane and I will forever share, and a tribute to Debbie…

And bigger gifts are yet to come.  Out of this chaos, out of the confusion and mess, out of the biohazard and sterility, between the screams and the prayers, where all of these things stand side by side in the oncology wing of any hospital, somewhere between the hard cold facts of science and the comfort of bedrock faith, between biology and Spirit, somewhere between Life and Death, emerges a miracle…

Just after sunrise I awake from a brief sleep, sticking to the vinyl chair next to Debbie. When my eyes adjust and I shake off the exhaustion, I realize she is awake and smiling at me.  “Hi!” she chirps, with a little wave and that beautiful smile. I am shocked; where is the coma, the delirium?  Instantly any drowsiness disappears, and adrenaline puts every nerve ending on alert.

I hold Debbie’s hand and look deeply into her eyes; she is there.  We talk in hushed tones, with a respect reserved for sacred places.  The small talk is quickly replaced by heartfelt conversation.  I ask if she is okay; she is; if she is afraid; she is not.  She tells me she knows she is dying.  My memory retreats to the dark places that all couples who have shared 27 years have; I bring up a specific fight that I wish now I could take back.  She remembers and offers forgiveness before I can even ask.  I start bringing up another episode, but she squeezes my hand and stops me; I am forgiven for all my shortcomings.  But did I love her enough?  Her journey will be cut short, way too short, it is not fair, it wasn’t supposed to end this early and had we known would we have done things different?   Could we have loved each other more?

Deb stops me, tears streaming down my face, but hers still calm and peaceful and smiling.  She starts telling me about her best memories, the birth of our two sons and the pure pleasure she took in being a mom and raising them; we reminisce about some of the wild, out of control times with friends at bars and concerts; and we are suddenly whisked back to the perfect glow of a week without work and duty, where we laid in bed in our new house and made love the entire week, and just talked and read and only got up to do the bare minimum for Jake and then immediately rushed back into the comfort and peace of each other.  We gaze at each other like we did when we first met, when the spark and promise of love was all we needed. Mutual smiles, shared comfort, the tears are just tracks now, real, true forgiveness, real, true love, and peace, genuine genuine peace…

I know enough from my research and reading about death and dying to know what is happening here, and I know that this gift is not just for me.  I practically run through the hospital to find Diane, whisking her hurriedly into Deb’s room, and leaving just as quick, shutting the door behind me.  And I am working the cell phone frantically, getting people up here.

It is amazing, in hindsight, how everyone Deb wanted and needed to see was on their way.  Her sons, her mom and dad, both of her brothers, my mom and sisters, and they all arrived staggered but in perfect order, as if being guided by the Grand Organizer.  Everyone gets 20 or 30 minutes with Debbie; what gifts or goodbyes she gave them, what gifts they gave her, are I am sure forever etched in each other’s hearts.  But the way this morning played out, the perfectness and the organization and the heartfelt gifts and the peace and the love that happened in Room 6523 at Forbes Hospital in Monroeville PA – it was truly a miracle.

I have read extensively of these awakenings, from a scientific and medical perspective, and from a spiritual perspective.  They are not uncommon; in fact Kubler-Ross estimates that around 50% of the dying patients she has spent her life studying experience them.  We can measure increases in brain waves, in areas of the brain associated with beliefs and emotions, and there are changes in body mass and a rejuvenation that “normal” disease progress doesn’t allow.  Kubler-Ross cannot explain it any better than science, but she, a scientist and a spiritualist, is 100% sure that they are gifts from the dying, to the living, a comfort to those left behind.

Perhaps these souls have straddled the divide between death and eternal life, and know the comfort that awaits them – that explains their calm and serenity.  Yet they continue to want to comfort those that they love, they are hesitant to leave those that they will always love, those who will be left behind temporarily, even though they know where they are going is better.  So they muster up a reserve of spiritual strength that science cannot explain, to say goodbye, and to offer whatever gifts their recipients are willing to receive.

And so Debbie blessed us all one last time…

Can you sit closer?
I’m right here, my love
Now watch me pass over
I’m right here, my love
We did not give in and we did not give up
I’ll watch you cross over
I’m right here, my love

Deb’s awakening lasts only a few hours, soon she is tired and falls back into a semi-comatic sleep again, and the fire in her eyes from the morning does not return.  Deb does not get any better, but those of us around her have changed, we are calmer and even a bit refreshed.  But there is still so much work to do.

It is agreed that Debbie will be released in to hospice care and taken home.  This is what she wants, we all know it now.  As with anything involving hospital bureaucracy, it is a maze of confusion and phone calls and organizing that is herculean.  We are all on full alert now, and all the family members are around, and we are working as a team.

Getting Deb home is tough, and it hurts to see her carried into her house in such a frail condition by the beefy ambulance driver.  Of course Deb tries to make light of the situation, but the loss of strength is now a permanent feature that she has to consciously fight; when she does drift to sleep there is an uncharacteristic frown of exhaustion.

The confusion of being left alone at home, caring for a dying loved one, without any professional help until the morning, sets off a panic.  We have been given cryptic instructions for administering 6,000 types of medications all the way up to morphine, and we are unfamiliar with the oxygen machine and the hospital bed and the portable toilet and all monitoring all that needs monitored.

It is a MASH unit right after a battle at 210 Gibralter Drive, but we are here out of love for a spouse a sister a daughter a friend; once again out of this chaos Love rises.  Everyone’s strengths are utilized, and the curtain goes up between the family room and the dining room for privacy, and computers are fired up and spreadsheets emerge to chart the medications and the internet is humming on cell phones as we track which drug is which and when it should be administered and who can run to the store for more Ensure and pick up a pizza on the way, will you, and can someone make sure the boys are okay, I haven’t seen them all day and oh my god just a couple of hours ago we were all a mess but the Great Organizer has shown up again and after many frantic phone calls and very patient medical providers, there descends a sort of equilibrium over the Walko household as the last of the days’ light filters into night.  Enough organization that I am able to lie in a bed sometime after midnight, for the first time in a week , knowing that Debbie’s family is gathered close to her for the night.  We all get some very fitful but so needed rest, however brief, sleeping on leaky air mattresses and uncomfortable sofas and the too thin carpet.

In the morning the situation is not good.  Deb takes only a few sips of Ensure, and has not urinated in over a day; I know from the hospice folks what this means, and call them out first thing.  And indeed, the hospice worker confirms that the situation is dire, and we are instructed to keep the morphine up as needed.  Two hours, two days, two weeks – the timetable of passing will forever be a mystery.  Once again we are left to ourselves.

Later in the morning it is obvious that Debbie is entering the final stages of dying.  Every breathe is labored and uneven; she is not responsive.  We struggle with when and whether to give her more morphine.  Everyone is summoned.  And just like a few days before, when Debbie gathered everyone to say her last goodbyes, we are all gathered around her bedside.

Debbie’s hospital bed is in the middle of our living room, so there is room for everyone to circle her.  The room is bathed in light, from the sunlights and sliding glass door that leads out to the deck, to the designer window that looks out over the woods and is flooded in green.  White butterflies flit through the green, and it again is peaceful.

We are all together, Deb’s entire family, my entire family, but we also experience this separately.  Everyone reacts to this in their own way, the culminations of years of experiences and beliefs that are as different as fingerprints.  Some pray traditional prayers passed down for generations; others sit in silent reflection and personal prayer; some keep busy checking on the kids and taking care of everyone’s physical needs, which don’t abate even in these dire times. Some weep openly, others in silence.

But we share many things in common too.  We all want to hold on to Debbie, and the jockeying for position has reached a lineup that allows everyone access to touch Debbie.  Her mouth is now open and her eyes are partially rolled back into her head, and there is a quiet fear that has joined us, too; we don’t know when death actually occurs.

This is not my first experience with this moment.  When I was fifteen, on an early May evening, I had a feeling that I should not go to bed, despite it being a school night. Mom was okay with this for some reason.  And I went and sat next to my dying father, and I watched his breathes quit coming, and I watched what was left of him sink into the same type hospital bed as his soul left his cancer riddled body…

And now I am faced with the hardest part of the inevitable – do I bring the boys out to be with the mother as she passes?  It is a horrible dilemma, it is true torture.  I am so glad that I was with my father when he passed, but I was older; I don’t know how this will affect a 9 year old and a 12 year old.  I look around at the worried faces who are gathered around Debbie; I am kneeling, holding Deb’s hand, asking her what to do one last time, but she doesn’t answer.  I look up to the faces around me, pleading for help, pleading for advice – do I bring the boys out or not?  No one can help me, for there are no right answers; I must make these decisions on my own.  And although I don’t know it at the time, it is this precise dilemma that is the single parents’ greatest crisis, it is why we can’t sleep, why it is so hard – the decisions I make alone will affect my kids deeply.

I decide to talk honestly with Jake; I tell him his mom is dying.  Would he like to be there while she passes, or at least come and say goodbye?  Jake opts for the later, and kneels by his mom and says a prayer and tells her goodbye like he is telling her good night.  All of our hearts break…

Trevor is different; he is younger, he is more sensitive, he carries on Debbie’s gentleness and her big heart.  I truly do not know what to do with him.  I pray silently outside his door for a sign, for guidance. And when I enter his room he is asleep.  I decide this is a sign that he should not be there when mom leaves.  But I carry him out to see mom one last time, and again we say a prayer and he gives her one last kiss, and the scabs and scars of the heartbreak of just a few minutes ago when Jake said goodbye are torn open again in fresh agony.  It is the hardest thing I have ever done…

And then there is a long period where nothing happens.  Deb enters into a period of suspension between life and death, and nobody has any idea how long it will last or what we should do.  So we continue our vigil, waiting for signs.

And then Deb’s parents’ priest arrives.  His simple entrance breaks the pall, and his authority on these matters lifts everyone.  He is serious but not somber, and his faith that this is okay is comforting to all.  Especially to Debbie.  Last rites, given before, are given again, and we all join in prayers of the sacrament.

There is a sense that Debbie has been waiting for this.  But Father Joe knows that those gathered around are in need too.  His spirit is light, almost jovial – not what I expected.  After the sacrament, he even makes jokes, lightening the mood, trying to make everyone feel better, trying to make everyone happier.  Just like Debbie would have. Just the escort she was waiting for.

Debbie passes five minutes after Father Joe leaves…

I do not remember how I felt right then; I do not remember what went through my mind, what I felt in my heart.  It is like a dream again, and I am in a tunnel, and reality is at one end of that tunnel and the unknown at the other.  I am pulled in both directions at once, and caught in the middle, suspended in a state of disbelief.  I can hear crying and wails, and I think I am even making some of those sounds.  But it is like a scream that you cannot hear…

I don’t know how much time passes, a minute, five minutes, an hour, before I am pulled from the tunnel into reality.  From my knees, at Debbie’s bedside, I ask everyone for some privacy, for one last moment alone with my wife.

And the tears are unstoppable.

And my wails fill the house.

And the screams fill the space in everyone’s tunnel.

And it echos out into the yard and into the trees and the green, where the white butterflies fly.

And I hold her one last time, and I sit with her until the wails stop, until the tears are no more, until I have to let go…

Can you hear me crying?
I’m right here, my love
Thunder and lightning
I’m right here, myl ove
Worlds far apart can’t separate us
And I can hear you crying

I’m right here, my love

The evening Deb died there was a spectacular sunset, and a cool breeze swept away the oppressive summer humidity that had added to the pressure of that week.  A line of thunderstorms had rushed through earlier, though we barely noticed. In its wake was a 15 degree temperature drop and a refreshingness that was palpable.

I sat on the bench that Deb and I made, in the yard that I have molded to my dad’s plans, looking at the house that Deb and I made into a home.  The days’ confusion is gone, thankfully.  It is a Sunday night.  No more coroners or medical supply people or pizza delivery persons; no more crying relatives and friends, all with the best intentions but also wrestling with and adding to the confusion.

Death is not an easy topic.  Dying is not something we like to discuss.  It is shrouded in sadness and pain, and mostly, fear.  And these are all appropriate, and necessary – for we all need to work through these issues, as we inevitably experience the death of loved one, and as we inevitably will experience our own death.

All of these emotions that we carry through the process of dying teach us something.  As I sit on the bench in the Evening’s Light, filtered through the trees, the cool breeze lifts up my spirit and carries me along with it.  I know, certainly, that this loss will hurt, it will hurt bad, and it will affect me in ways that I cannot even begin to fathom.  I know this will haunt my boys for the remainder of their days, and I know that so many special people, people that are so close to me and meant so much to Deb, I know they are hurting in ways that only they understand.

But there is a calm tonight, a calm that I cannot explain and that I certainly did not expect.  Perhaps it is because I am emotionally spent, spiritually carried through an adventure of epic proportions.  I am tired, exhausted, and completely hollow; I have nothing left.

But at this moment I do not need anything.  At this moment my boys are okay; they have constructed offerings and tributes to their mother that will forever touch my heart.  They are still kids and glimpses of still being kids as they play in the yard bring me strength.  And my sisters and I have said our prayers and constructed our own offering to Deb and her spirit; and it is good, the acknowledgement coming from the Spirit that flows through the cherry trees now, the wind that takes away our sadness, at least for this moment, the sound of only the leaves rustling and the sense that even though things change, it is all okay.

“If life was found to be agreeable, then so should death be. It comes from the hand of the same master.” – Michelangelo

redbud

I’M RIGHT HERE MY LOVE – written by Scott Miller, duet performed by Scott Miller and Patty Griffin

Can you hear me crying?
I’m right here, my love
The unknown is frightening
I’m right here, my love
Worlds far apart can’t separate us
And I can hear you crying
I’m right here, my love

Can you taste my kiss?
I’m right here, my love
I wish life was endless
I’m right here, my love
But living costs something and pay it we must
But I will keep your kiss
I’m right here, my love

Can you feel me tremble?
I’m right here, my love
Does it feel like you remember?
I’m right here my love
The future’s assured in the pulse of our blood
I can feel you tremble
I’m right here, my love

Can you sit closer?
I’m right here, my love
Now watch me pass over
I’m right here, my love
We did not give in and we did not give up
I’ll watch you cross over
I’m right here, my love

Can you hear me crying?
I’m right here, my love
Thunder and lightning
I’m right here, myl ove
Worlds far apart can’t separate us
And I can hear you crying

I’m right here, my love

Post Script – Jake and Trevor and I went downtown, by bus, in August, to Pamela’s, and to a baseball game, just like we planned.  And mom and mom’s hat went with us.  And the aroma of the world’s best pancakes and ballpark hot dogs and the laughter of children and the sound of life, beautiful life, floated on the summer breeze…

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19 thoughts on “Grace, Courage, and Dignity

  1. Joe, you have a special gift too. Your writings in these posts are heartfelt. They express emotions. They make me cry and smile all at the same time!
    This was just beautiful!

  2. Joe, I’m sure there’s not a thing I can say that would help. But I can tell you that your words are the greatest tribute to not just Debbie’s life but your life together. When I saw you and Deb at Tracy’s reunion I was surprised that she was someone I knew at least to see – at soccer or football or baseball. And I never, ever suspected she was suffering when I saw her last year. I as shocked when I was told by someone that she was dying. Now I can’t even imagine the challenge and the heartache of trying to be mom and dad to your wonderful boys. But you’re doing it. You’re doing it every day. You may not be doing it the way she did but your sons are learning a lot more from your endurance than they – or you – realize right now. Complain all you want about the leaky faucets and the unending laundry. Those are the things that make you want to pull your hair out! Hang in there, Joe. I pray for strength for you and all the single parents.

  3. Joe- This is an extremely touching tribute for an extraordinary person I was blessed to know. Deb was truly the brightest light I have ever seen and left an indelible mark on my life. Your courage and candor a year following her passing are an inspiration to us all.

  4. I think about this week often. Watching you, I don’t know how you had the courage and strength to do what you did that week. I watched you and Diane with complete amazement, often times wondering if I was just getting in the way. I am so blessed to have been a part of that incredible, incredible experience. It was hard, sad, and amazing all rolled into one. Hearing your wails moments after your wife just died and knowing the hardships that were ahead of you was almost too much to take. But, you are doing it. One day at a time, often one hour at a time, the best you can. You three are a great team.

    I put off reading this until I was in an emotionally “ready” state. It took me double the time of the average person to read, running to get kleenex and sometimes just needing to walk away and cry. As I read on, the rain fell harder and harder outside of my window.

    Sometimes this week you wrote about feels like just yesterday and other times it feels like a lifetime ago. I think going through this experience with the people we went through it with made me a better person. I get so overwhelmed with the little things in life sometimes – adding a patio and completeing little projects for the summer- that I don’t always see the things right in front of me. I have the summer off, to spend with my 4 and 5 year son and daughter. I finally put off doing the household chores and just did what they wanted to do today. We’ve had a big box in the garage that they wanted to paint and turn into a house for awhile now. We did it today. I played with my children and listened, really listened to them when we sat down to lunch instead of trying to make phone calls or see what was next on my list. And now the sun is shining. I know that is Deb. Thank you, Deb, for still touching our lives. Thank you, Joe, for sharing your words and experiences. I know great things are in store for you in this next chapter of your life! And as always, I am here for you. I love you.

  5. In reading your blog, of Deb’s final days, I felt like I was reliving my final days with my mother. I will never forget what I had experienced; for I knew it was my mother’s final gift to me.
    Thank you for your sharing your emotional, spiritual journey over the last year. I knew Deb only because of my grandson’s friendship with Trevor. She was just as you described her; beautiful and full of life. I feel blessed to have crossed her path.
    God bless!

  6. This is the most unbelievably heart-rendering blog I’ve ever read. Your raw, pain-filled words, your way of expressing the unexpressable just overwhelm me. What an amazing tribute to a lovely woman. You were blessed to know her, and blessed to care for her. Thank you for sharing from your heart.

  7. Joe, Thank you for sharing your memories of Debbie’s last day’s with all of us! It must have been a truly emotional task. It took me awhile to digest and work through the emotions but after reading what came to my mind was the private time I got to spend with Debbie while she was in the hospital. Both her and I knew what was happening. It was as though words would get in the way. I told Deb I loved her and she said the same. We held hands very tightly for quite awhile. I remember feeling like I was suspended in space. I knew we would be loosing her physically very soon. I was not ready to loose her! I had told friends previously in conversations that “I can’t imagine life without Debbie in it”. And I really couldn’t. However, being with her, holding her hand and feeling the love between us was helping me accept what we both knew. She gave me strength — and I knew her spirit of love, hope and optimism would live on.
    Joe, you experienced the gift she gave and so did I and so did so so many others! I remember when Dad died and I felt the same upliftingness. But my heart broke for you and your sister’s then and it breaks for you and the boy’s now. But I know you will come through a stronger and better person.
    Sometimes you ask me “how did you do it mom?” The answer I come up with is to look at each new day as a gift, And each challenge of fatherhood and life as an adventure. And most importantly, look at that cup in front of you as “half full”.
    You, my son, amaze me in so many ways. I have much faith in you and know you will be ok and will go on living a fruitful and meaningful life. It’s ok, good and necessary to move on with life. I know without a doubt Debbie would want that for all of you. And of course Debbie will always be with us in our hearts!
    I love you Joe, mom

  8. Joe, I am Maura Jump’s grandmother from Conneaut Drive. I have been reading your blog posts all year, and often wanted to reach out to you. I remember Debbie’s smile and friendliness when she walked the boys to and from school every day. I sat next to her when Maura and Jake graduated from 6th grade last June and marveled at how good she looked. I lost my first husband 26 years ago, and our boys were 9 and 14. I watched him fade away over a 7 month period from esophageal cancer at the age of 37. Hospice care was not readily available at that time, and his final days were brutal. I wish the boys could have My overall emotions at that time vascillated between anger and hopelessness. I only wish I could have found the spiritual comfort you have obviously found. Family and friends were wonderful, and my very survival depended on the generosity of others during that first awful year. Slowly I pulled myself together, and started to make better decisions in my life. Being mother and father to two young boys is a challenge, and by the grace of God, my sons are both wonderful men. But I still feel guilty sometimes for being emotionally absent from them at times. Your blog has brought back some memories for me, and maybe some perspective on my own life. Three years later I married a wonderful man who knows my late husband is still a very huge part of my heart, and always will be. My heart still aches for my boys when I think about the birthdays and other milestones they have experienced without a dad. And having lost my own dad when I was 15 I know the feeling of seeing everyone else with two parents at school and family functions. Sometimes this hurt is palpable, but we learn to live with the pain and move on with our lives because our loved ones would expect us to do so,.Thank you from the bottom of my heart for sharing your thoughts and feelings with the rest of us. You should probably find a publisher and think about putting your blog into book form.
    Beth Harkay

  9. Hi Joe, I wanted to share my thoughts of this experience with Debbie…
    Little brother loses his big sister

    My name for Debbie was “sister”. Rarely did I call her Debbie or Deb. She was “sister” to me. Same goes for Diane my other sister. I can’t imagine having better sisters. Both looked out for me for as long as I can remember. Debbie used to let me hang with her and her friends in high school. I was a freshman she a senior. I felt so cool hanging with big sister and her cool senior friends. She didn’t make it easy for me though. In middle school when I hung out with the wrong crowd if you will….Debbie told me that if I didn’t break away from that crowd…I would not be able to hang with and her friends again. The summer before I entered high school as a freshman…I changed my ways …I’ll never forget that. Debbie wasn’t just a sister to me…she was my friend…best friend. I am so like her in so many ways. I remember when she won the #1 Sales Presentation for her job with Danka selling copiers. She proudly showed me the recorded presentation she did to win the top prize. Wow, was she ever amazing….I can still see it now …her every word and jesters and mannerisms…..how she intently listened to the audience and ever so perfectly answered their questions. She was awesome…I was so proud of my big sis. I’m now in sales and have been for 16 years. To this day I try to make my presentations just like she did. Since her passing, as I present now to my prospects, I see myself acting just like her….I mean just like her. It’s like I memorized every move and skill she had and tried to be just like her. I pause for just a moment during the presentations I do now and think about Debbie and feel proud, so proud to be like my big sis. Not as good as her…but I know she would be proud.

    I cherish the days I would hang with her and Joe in my college years and after… going to see Brownie Mary, The Clark’s and the Gathering Field. Debbie and Joe were my pals, my friends not just family. It was so natural just being around them. God I miss those days. I remember when I moved to Florida for 4 or so years in my twenties from Pittsburgh. I almost didn’t go…because I was going to miss being with Debbie and Joe. Our fun times, my dear friends.

    Debbie reminds me of Courtney Cox on the show Friends. My wife Lisa and I love that show. I see Debbie in the way “Monica” is portrayed and acts on the show. It puts a smile on my face. I still dream about Debbie and quite often. Not sad dreams but dreams that remind me of how great she is/was and the great times I had with her. I think it is her way of staying with me. That’s my way of knowing that she is ok and some day we will be together again.

    The worst week of my life

    July 8th 2012, I remember the call I got from my sister Diane. I was at the Galeria Mall heading to Panera Bread for a bite to eat with the Lisa and the kids after church. She told me Debbie’s extremities were cold and it was time to get over there……I was numb all over. The call came just 3 hours after I left Debbie’s house. I spent the night at Debbie’s on her 1st day/night back home on Hospice after being in the hospital for the 6 or so days….

    The week Debbie spent in the hospital was a week I will never forget. At Trevor’s birthday party (the day prior to going to the hospital) Debbie was so amazing and threw such a wonderful birthday party. I could see the yellow in her eyes and some jaundice and swollen belly. I knew the cancer was invading the liver and winning the battle, but Debbie wouldn’t let on. To many others at the party you would never know what was going on inside Debbie’s body.

    When I learned she was in the hospital I went to go see her to be by her side and just….well…just be there. I didn’t want to be anywhere else. The entire week I wasn’t with my wife and kids much at all. They didn’t give me a hard time even though I know the kids missed me. I felt a strong desire to be with Debbie and nowhere else. I still remember when she told me she had breast cancer 4 years prior to her passing. I was sitting in my car in my garage at home. I was strong for her and Joe. They called me for help and guidance for they were unclear of next steps, and what to do. I was honored. I serve as the Race Director for the Race For The Cure and I am in Medical software sales. So I was fortunate to have some contacts that may be able to help Debbie. My first call was to my Executive Director for the Race. As soon as the words came out of my mouth that…”my sister Debbie has breast cancer” I broke down crying. My Executive Director was very comforting and offered to help any way she could. She offered to talk to Debbie and give her advice and explain to her what happens now for her. Debbie called her and she was very helpful. Debbie also consulted with and met with some wonderful physicians I was able to put her in touch with. I am forever grateful for the help and guidance they provided as well as my friends and clients who helped to make this happen.

    Debbie’s final week with us made some ever lasting memories for me. I spent time visiting her the first few days. And Debbie being Debbie…she was concerned that the kids and families who came to Trevor’s birthday party wouldn’t get the Thank You Picture Cards she made and sent to Walgreens. This was so important to her..she spent a long time the night after the party designing wondering Thank You Picture Cards on her iPhone. I made arrangements to go to Walgreens and everyone got their thank you cards just fine. She was still alert and perky as only Debbie can be. After the first few days she went downhill pretty fast. Seeing her on the 4th of July it was clear to me that there wasn’t much time left. No one knew just how much….

    Something that was important to me and all of us is that we always wanted someone to be with Debbie when she was awake. Anytime she woke up it was so important that she saw one of us. Everyone in our families were so wonderful helping Debbie. Whether it was my dad’s back rubs, my sister Diane rubbing her feet, my mom’s comforting words and gentle touches, etc. We all enjoyed helping her and were honored she was so willing to have us there helping. Every time I walked in the room …she would say Hi Dan. And when I left…I love you Dan. That felt so good.

    The day after the 4th of July I stayed at the hospital all day and decided to spend the night as did Joe, Diane and my mom and dad. We tried to take shifts staying with Debbie while others tried to rest. Rest was hard to come by just knowing what Debbie was going through. Throughout the night as I sat in the chair in her dark room…I would just look at Debbie trying to rest and I would cry and couldn’t stop. It was a rough night for Debbie. She was restless as we sat in her room in the dark trying to comfort her and give her water or Ensure….adjusting her wig as she moved around. She had trouble keeping it on and was so out of it. I had trouble trying to fix the wig. At one point I think I had it half on her face. My mom and Diane got a chuckle from that. Diane would save me and fix the wig. Afterwards Diane quickly rushed from the room in tears for this was really only the first time she saw her poor helpless sister without hair. Diane was taking this hard. Later that night Diane and I sat in the lobby area down the hall…I once again busted in to tears and Diane gave me a big strong hug to comfort me. Later around 4am we took a walk outside the hospital and actually got locked out…so we had to find another way in….which we did through a half propped open door. This little walk and adventure was good for us. I was having trouble coping with this and I tried to keep my emotions in check but it was too hard. My mom and I had lunch in the cafeteria the next day and we both broke down. I’m so grateful my mom was with me and comforted me as I did her. I was angry with God….and the night I spent in the hospital, I was in the bathroom praying and also expressing my deep anger with God silently questioning why my prayers for the last 4 years were not answered. I know in silence I said things to God that I did not mean and regret. I needed to let my emotions out. In front of Debbie however I was a rock. I never let her see my emotions and I tried to lighten the mood at times and was upbeat. Debbie said to me…thank you Dan for being so positive. That made me feel so good. I knew I had to continue to be strong and positive and keep my emotions to myself. At one point she asked me what I thought Heaven was like…that was a tough but I answered like I knew…reading some books on near death experiences helped me.

    I was involved with the talks with the Nurse Manager as he discussed the options for Debbie…palliative care or hospice. It was hard to hear these words and to be part of this discussion…it all seemed so final. The nurse manager was very good at his job. He was very good at listening to everyone who wanted to offer their opinion and of what was best for Debbie…palliative or hospice. There was talk of what if there was a new drug or miracle drug that could help Debbie… “Would it be possible to take her off hospice, etc. so she could have access to this drug or miracle drug?” So many questions so much to talk about so many decisions to be made. In the end, Debbie was okay with going with hospice… She was of sound mind when she said she was okay with that.

    Debbie’s belly was so swollen and getting worse each day at hospital. The decision was made to have to Debbie get a procedure that would allow the fluid to escape her body. She was not allowed to eat or drink anything for a number of hours (maybe 12 hours or so) before the procedure. It was so sad that we had to give her sponges on a stick dipped in water to wet her mouth and tongue in lieu of giving her water to drink or food to eat. The procedure was a success and helped to relieve some pain and discomfort that Debbie was experiencing. There was a tube inserted into her belly that would allow the fluid to drain throughout the day and night. Many times I would be the one to release the fluid from her body and into the tube and into the bag collecting it. It was tricky at first in learning how to do this correctly but I got pretty good at it at the end.

    The day finally came for Debbie go to home…seemed like forever for her and all of us. The paramedics who came to pick Debbie up or very nice and were very gentle with Debbie. The lead paramedic said to Debbie as she lied there in the gurney… So how are you doing and Debbie said back in her meek voice and a beautiful smile on her face…”I’ve been better”. That put a smile on ours faces…her being funny and sarcastic like that….I’m so going to miss her funny sarcastic ways!

    When Debbie got to her house the paramedics had to strap her into a chair and carried her up the stairs into the house. She had such a frightened look on her face. But she made it just fine. When she was done she asked me to check the tube in her belly to make sure it was still okay… The tube for drainage was just fine.

    It was a relief for her and everyone to have her back home little did we all know it would only be one day/one night. There was excitement in the room as we all were comforted to know Debbie was home. Her nieces and nephews called to speak to Debbie which was wonderful. My brother came and sat next to Debbie at her bedside looking at past photo albums that Debbie was so good at putting together…she loved scrapped booking.

    No one slept well that night. Diane and Joe finally were able to sleep (I use that word lightly) in a bed…and not on a hospital couch. I slept on a blow up mattress half filled with air….directly behind Debbie’s hospital bed in the family room upstairs…my head right next to Debbie’s oxygen tank. The noise from the the O2 tank was unsettling sound to me knowing this was here to assist with Debbie’s breathing. It almost scared me and made my heart race. I lied there in tears that night watching Debbie trying to rest… yet often squirming in bed trying to get comfortable. I felt helpless and knew the end wasn’t too far away. She was nauseous and was most of the night. Earlier that evening while she was in good spirits we fed her some strawberries. The only solid food she had in days. As we fed her the strawberries….she would say with her meek voice …”oh these taste so good”. It was great to hear her say that and enjoy the small meal. We were hoping she would gain some strength from them. Little did we know the strawberries later that night made her sick.

    Throughout this night I would help to drain the fluid from her belly into a special bag and discard of it. My dad would also help to drain the fluid. I felt horrible for my mom and dad. For they were soon to lose their beloved first born. That night as I lie on the floor I see my mom and dad sitting in a chair next to Debbie’s bed side….comforting her, fixing her pink hat to make sure it stayed on her head. Doing whatever they could to comfort their little girl. Wanting to spend every last prescious minute with her. At some point that night Debbie was feeling sick. I come over to talk with her and then decide to give her some medicine the hospice nurse gave us for her. Before I was able to she said she was going to get sick. I call for Diane in the kitchen to quickly grab a bowl. Diane came rushing in …just in time as I held the bowl for Debbie who threw up the strawberries she so enjoyed earlier. Diane and my mom were awesome comforting Debbie and wiping her mouth for she was too weak to do so. As I go in to the bathroom to discard of the undigested strawberries. I break down crying in the bathroom knowing this was a bad sign and I wasn’t sure much longer we would have our dear Debbie.

    The night was a blur yet so clear. We had to be clear and on top of things…and ready to administer meds. I felt comfortable giving Debbie her meds…for I felt it was a way I could help her to feel better. There were so many meds, so many questions…but we had a great team of family there at the house to figure it all out. What a great team. I’m so proud and honored to be so close to Joe’s wonderful family and mine. Both families were great and worked so well together all week long. At a time where stress mounts, everyone’s tired and sad, etc…there were no disagreements there were no arguments …we all worked so well together. I was so impressed and I love all our families so much.

    The morning of her passing I decided to go home to see my family and go to church together and come back later to be with Debbie. I can still smell the strong dark coffee Joe made that morning that we all need it so badly. I went over to Debbie… She told me that she was feeling nauseous so I gave her some medication to help her. I gave her some sips of Gatorade and again she would say “oh that taste so good”. I told her I was going to go to church to pray for her and I loved her and I will be back later. She told me “thank you Dan” and… “I love you”…. I told her I love you too. These were the last words her and I will ever share again. I will cherish these words forever.

    I got back home and headed off to church…during church I broke down crying…I couldn’t hold it in nor stop. After church we headed to Panera Bread for a bite to eat…that’s when I got the call from Diane as I described early…….

    I rushed home shaking and numb knowing there wasn’t much time left…I packed a bag of clothes…and sped to Joe and Debbie’s house exceeding 90mph sometimes. While I was driving….I smelled a strong odor like a candle was blown out and that familiar smell was all through my car. I had an eerie feeling that Debbie had passed..

    When I got to her house…I ran to the bed…she was still with us…eyes shut, struggling to breathe and unconscious. I said Hi “Sister”…I swear I saw her eyes open just a bit to take one last peak at me. I told her I went to church and lit a candle for her…and that I finally figured out why God wants you to be with him…he needed a people person just like you so that you can help others to be just like you.

    We all sat around the bed for maybe 2 hours. I was holding onto her leg watching her struggling to breathe.. hearing the O2 tank that I slept next to the night before forcing oxygen into her nose crying at times uncontrollably and saying to Debbie you look so pretty. At one point as I sat next to Joe…I see Joe looking around the bed at everyone holding onto Debbie shedding tears and sharing stories…he had a small smile and comforting look on his face knowing that having us all there at her side in her last minutes of life is exactly what she wanted. A priest came to the house and we said prayers and Debbie was read her last rights. Father was very nice and comforting and we even shared a laugh or too. Father was getting ready to leave and at the door saying good bye…it was decided based on our conversation earlier with the Hospice nurse that we could give Debbie some more Morphine because we didn’t want her to wake up in pain. I headed over to the table where we kept the medicines. I have the syringe in my hand, on one knee and ready to open her mouth to squirt in the Morphine…when Diane said…Dan, I don’t think we need it. Debbie was down to her last few breaths…I quickly laid down the unused syringe and sat next to her side and called for everyone to quickly come in…they did and we watched Debbie take her last sweet breath.

    Tears and hugs followed for quite some time. Joe asked for some time to be with his wife. We all leave to let Joe be by her side…his wails and screams sent shivers up spine only imaging what he is going through losing the love of his life and mother to his children.

    This experience, though terribly sad and has left a void in my heart and life forever…I was honored to share this final week with Debbie and helping to take care of her. Each night after her passing to this day…I pray to God to make me strong in my faith to know that one day I will be with Debbie again in Heaven.

  10. Dan, I have read you response to Joe’s blog for the second time and it makes me cry and it also makes me happy. You had a TRULY wonderful relationship with your sister Debbie. I thank you so much for sharing that with me and everyone else! Debbie will ALWAYS remain in my heart. Sheenie was a big big part of my life. Not just my son’s wife but like a daughter to me and of course the most wonderful mother to my 2 grandsons I could have asked for. I will love her and miss her always. Love, Genie

  11. Wow, thank you all for your heartfelt comments! I know how much courage it takes to put feelings into words, but I also know how much healing it induces, too – I truly hope everyone who commented here experienced some of that grace. And I certainly appreciate all the genuine comments and sharing, even from people I have not even met. We will all experience loss in our lifetimes, if we are lucky enough to live long – it is inevitable. And I have come to accept that… And I hope other’s have too, and I hope we all know we can lean on each other, we can share with each other, we can connect across miles and boundaries because we are all One Heart, as Debbie certainly has taught me. Grace and Love to all…

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