Grief

When lying is loving

~ Cheryle Gardiner ~ Leave a comment

October 20, 2021

Dear Martin,

I’ve remembered a few things that I want to write to you before I forget them! I think about you every day, and I miss you. Sometimes I will do something, or hear something, or a memory of you will just pop up in my mind. Last night, it was the hot tub.

Before bed, I decided to soak in it for a short while. My back was hurting, and I knew the warmth of the water and the force of the jets would give me some relief. As I sat there, I remembered how badly you wanted me to have it fixed during that last couple of months of your earthly time. The heater wasn’t working, and I had ordered a repair. It seemed that was all you could think about – getting it fixed. You wanted to sit in its warmth and relax, and imagined the relief it would bring. I spoke to the hospice nurse about it, and she wanted you to first be assessed by an occupational therapist, since your balance had gotten so bad. With high hopes, you readily agreed to the assessment, even though you hated having people come into the house and “handle” you. The potential of the hot tub overcame whatever resistance you normally had.

Within a few days, the OT arrived. She first wanted to put a gait belt on you so that she could help you if you became too unsteady on your feet. You vehemently refused, saying that your walking was fine. It was obvious that it wasn’t, but her job wasn’t to argue with you, so she deferred to your wish. She followed you closely as you made your way outside to the deck. The hot tub sat empty of water, and the therapist stood by as you made your way up the two steps and climbed in. It was clear even to my untrained eye that you were too unstable to get in and out of it safely. She seemed sad as she delivered the news that you didn’t want to hear, and you responded in anger that you could be safe – if I’d just get it repaired.

The repairman had called me just a couple of days before to tell me the part had arrived, and to schedule an appointment to install it. I called them back the day of your OT assessment to tell them to hold off, and that i’d call them when I was ready to schedule. Pulling myself together, I then told you that the part wasn’t currently available, it was on backorder, and they didn’t know when it would arrive. You angrily insisted that someone, somewhere, must have it, and that I should call around until I could find someone who did. It was a hard conversation. I hated lying to you, especially since I knew how badly you wanted to immerse your poor aching body in the comfort of warm water. (As I write this, it has occurred to me that perhaps it was a subconscious desire to be in a womb-like environment, safely, comfortably cradled in warmth and safety. A fanciful thought.)

For the remainder of your lucid days, you yearned for the hot tub. It was the longest lie I’d ever sustained, and I hated every minute of it. It was something that was in my power to give to you, and I couldn’t do it. I couldn’t keep you safe if I had it repaired, and your safety was paramount.

I’m so sorry, honey. You couldn’t understand my fear and you didn’t think I understood your yearning, so the lie was necessary. It’s still a painful memory, and one that returns each time I seek the healing power of that warm water. Just know that lying to you was an act of love, not malice.

Love always,
mom

Remembering

~ Cheryle Gardiner ~ Leave a comment

October 2, 2021

My dear son Martin,

Nine months ago today, you left this world and moved into another. I wish I could say that writing this on the nine-month anniversary of your death was something I had planned, but it isn’t; it was purely coincidental or serendipitous. I seldom mark the 2nd day of any month, usually realizing a day or two later that it has come and gone. But today was different. The realization of the date, and the significance of nine months came as I was preparing a cup of tea. The fact that this realization was also within 20 minutes of the time of your death also seems odd; perhaps it’s all more than a coincidence. I don’t know. And, really, it doesn’t matter.

What matters is this: For the past nine months I’ve been promising myself that i would write your story, but I’ve never known exactly how to start. I thought I might do it as a series of letters, and that might be the best, perhaps the only, way I can do it. It only matters that I do it. And maybe it only matters to me, but I have a strong determination that you be remembered. I will write your story, Martin. As l carried you in my body for nine months, as I have carried my grief for nine months, I will carry you to the world for as long as I live, and I will leave a legacy of words that tell of you – the real you, not a faultless, glorified version, but a real human being. Someone who loved and is loved, someone who could leave me exhausted and exasperated; but also someone who could make me laugh and who was never embarrassed to show love for me and for all of his family.

As I wrote that last sentence, I remembered this about you: When you and Jason were in high school, I drove you there each day. As the two of you got out of the car, you never failed to give me a kiss and say, “I love you.” At a time of life when most kids are embarrassed to even admit they have parents, you didn’t care who saw you kiss your mom as you began your day. I’ve always treasured that long-ago memory.

I will close this, my first letter to you in many years, with that precious memory. I love you, son, and I hold you in my heart.

Mom

To Martin on Mother’s Day

~ Cheryle Gardiner ~ Leave a comment

When the time was right,

You emerged from the safety of my womb

And began your journey.

 

When the time was right,

You left the safety of my arms,

And began to discover your world.

 

When the time was right,

You rushed from the safety of our home,

To find your own path, your own destiny.

 

But time turned against you, against me,

There was no safety.

And you stepped out of this world.

 

Out of time, out of order,

I hold only memories, safely and forever,

In my anguished heart.

Homecoming

~ Cheryle Gardiner ~ Leave a comment

 

On May 27, 1970, I brought Martin home for the very first time. As his father drove, I carried my precious bundle in my arms, excited and happy – and a little nervous – to begin my career as his mom.

On January 21, 2021, I brought Martin home for the very last time. As his baby brother drove, I carried my precious boy’s ashes in my lap, sad and tearful, missing him, but still his mom, still loving him, knowing that there’s little left for me to do.

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December 30-31, 2020

After Martin’s bad fall on December 30th, I was afraid for him to be by himself, afraid that he’d call for me in the night and I wouldn’t hear him. I slept directly across the hall in the family room so I could get to him quickly if he needed me. He was on full time oxygen at this point, but he was prone to take it off if it became bothersome. I slept poorly for about 4 hours. When I got up, he was groaning with every exhale, so I called hospice for direction. We increased his pain medication, and I called Ben to let him know that I needed him there. He arrived, followed soon after by Briana and the kids.

Martin on New Year’s Eve, drawn by his brother, Ben.

We also called Jason to let him know that Martin was not going to be with us much longer. Soon after, Jason emailed his flight itinerary to me, and I was relieved and thankful that he’d join us at Marty’s bedside on New Year’s Day. I prayed he wouldn’t be too late.

Briana and the children spent the day cleaning, doing laundry, and preparing meals for us. It was such a comfort to have all of them there, to know that I could stay by Martin’s side and not worry if something was needed – that loving, willing hands would take care of it all.

After dinner, Briana and the kids left to prepare for a New Year’s Eve observance with close friends, and a couple of hours later, I sent Ben on his way to be with his wife and children as we all said goodbye to 2020. I had a strong feeling that Martin wouldn’t leave me until the New Year. Ever since he had joined the Navy in 1989, he had called me from wherever he was in the world – both at midnight in his time zone and again at midnight in mine – to welcome the New Year. He would hold on, I was certain. I tuned his television to CNN and, as the ball dropped in Times Square, I welcomed the East Coast New Year with my boy, missing his ability to share it with me.

Wanting to be closer, but fearful that he’d fall on me if he tried to get up, I made a bed of sofa cushions and slept on the floor outside his room. I was close enough to respond immediately if he needed me, but at a safe enough distance that he wouldn’t fall on me if he tried to get out of bed.By that time, it was a new year on the West Coast as well, and I was thankful to know he had survived the most awful year I’ve ever known.

January 1, 2021

I knew upon waking that he wasn’t going to last much longer. Jason’s flight from Illinois was delayed due to weather, and all I could do was pray that he’d arrive in time. Ben and his family arrived later that morning, and we once again took up our vigil, interrupted only by text updates on Jason’s travel progress.

The hospice nurse arrived in the afternoon to assess him. When we discovered that he hadn’t voided his bladder since the previous day, she began to probe his abdomen. With a heartbreaking moan of pain, Martin rose to almost a sitting position and a few minutes later, we discovered that he had emptied his bladder. Although it was obvious it hurt him when the nurse probed, he seemed to relax more in his sleep. Briana, who had been cleaning, cooking, and making sure we all knew when food was ready, left those duties to join the nurse and me to help with personal care for him. He seemed much more comfortable, though his breathing was still labored despite the oxygen. Via telephone, hospice continued to coach me on administering his pain medication and clearing his mouth of secretions.

Finally, Jason’s flight arrived and Ben left to pick him up. He stopped at Ben’s to shower prior to coming to the house, in case he had any COVID contamination from his flight. I was so thankful to have all three of my boys together, especially knowing that it was for the last time.

Jason had brought his old Navy uniform, since it was our plan to bathe and dress Martin following his death and before the funeral home arrived. I appreciated Jason’s thoughtfulness; he knew what it would mean to his brother to once again, and for the final time, wear the uniform of the Navy that he had loved.

Not wanting to sleep on the floor again, but wanting to be close to him, I moved a small recliner into his room – possibly the most uncomfortable recliner I’ve ever tried to sleep in! Nevertheless, I managed to sleep for a couple of hours, holding his hand throughout the night.

January 2, 2021

I can’t really say I woke up because I hadn’t really slept, but the morning found Martin’s condition unchanged. I must have made coffee at some point, and I think I took a shower and changed my clothes. I know I’d been wearing the same clothes for a couple of days.

The house felt full of love with Jason, Ben, Briana, Addison, and Drew there to wait and watch with me. We had another visit from the hospice nurse to evaluate his condition, reaffirm that I was giving his meds properly, and to tell us what would likely happen as he approached death.

I’m sure we ate, drank, talked, and prayed, but so much is a blur to me. Late in the afternoon, I told Jason and Ben that we needed to make a list of who would need to be called – his dad and other family members and friends, and who would call each one. We decided to sit at his bedside as we made our lists, and we pulled our chairs to his bedside – Jason on one side of me and Ben on the other. As we talked and planned, Martin suddenly opened his eyes – the first time in two days – and looked at each of us in turn. It was obvious that he saw us, that he knew we were there, that he knew he was loved. He then closed his eyes and took four more breaths before going into eternity and becoming a beloved memory.

After calling hospice, I called my priest who said she would come right away. We made our other calls, and by the time Mother Esme arrived to anoint him and administer last rites, we had bathed and dressed Martin. We took turns sitting with him until the funeral home arrived and we could begin to wrap our minds around the hole that he left in our lives.

+++++++++++++++++++++++++++++++++++++++++++++

This has been painful to write, but necessary for me as I process a month – and the rest of my life – without my oldest child. I’m grateful to all of you who have traveled this journey through my writing, and appreciate your expressions of love and kindness.

When a loved one dies, we often make the mistake of whitewashing their lives and elevating them to some kind of sainthood. Martin was no saint; there’s not a person in this family who would ever attempt to paint him as one, nor would he want to be remembered that way. He was a human being. He made mistakes. He fought and argued with me, his dad, his brothers – but we all love him and we know he loved us. We remember him as he was. The most important thing is that he be remembered. He leaves behind no children, so it’s up to us who knew him in life to carry his memory forward, to tell people that Martin Jacinto Cerezo lived, that once he touched our lives and our hearts.

 

Hepatic encephalopathy – a cautionary tale

~ Cheryle Gardiner ~ Leave a comment

I don’t often specifically request that people share something I’ve written, but I’m asking it this time. It’s of specific interest if you have liver disease (cirrhosis or cancer) or if you know someone who has liver disease; but it’s also important because you might not know that you know someone with liver disease.

This information is being shared because of the recent death of my oldest son, and the bereavement of our family. It’s being shared out of the pain that I feel due to not knowing how cirrhosis was affecting Martin, and, by extension, his relationships with family, friends, and employers.

After Martin’s most recent diagnosis of liver cancer in late August, and his prognosis of six months or less, I began noticing symptoms of memory loss, word-finding problems, and other indications that more was going on with him than just physical symptoms. So, being me, I began doing research.
I discovered that liver cancer patients can develop hepatic encephalopathy (HE), or a decline in brain function. A simplistic explanation is that the liver’s job is to remove toxins from your blood, and an impaired liver cannot do this efficiently – or at all. Those toxins remain in the bloodstream, and begin to affect your brain, resulting in encephalopathy.

As the cancer advanced, Martin’s symptoms became more and more noticeable, and were a source of great frustration to him. Eventually he was using words that made no sense, and some of the signs were very similar to what I had seen in Jim as his dementia revealed itself. (One specific event was Martin’s attempt to tell me something about 7-11, which he called “Seven vanilla.”)

Martin also began to develop a noticeable tremor in his hands, which I attributed to a familial condition called “benign essential tremor.” It may have been BET, but, as I’ve since learned, it’s also a symptom of HE. His previously better-than-perfect eyesight (20/15 in one eye, 20/10 in the other) began to decline, and I often teased him about his “ageing eyes.” In retrospect, the rate of impairment was much greater than it would have been under ordinary circumstances.

Martin died on January 2nd, following a rapid decline – he’d been up and participated in a small family Christmas just eight days earlier.

When I shared my new information with his brothers, Jason and Ben, they both told me that they had noticed a difference in Martin’s acuity and behavior over the past ten or more years. Since they saw him infrequently, they were in a better place than I to notice what, to me, was just Martin being difficult and argumentative. We’d had a contentious relationship for years, and, although our arguments had become more frequent, I attributed it to the fact of two strong-willed adults sharing living space.

This past Sunday, just four weeks after his death, Ben and I discovered that, when Martin changed the oil in my car last summer, he had installed the oil filter incorrectly, which was resulting in an oil leak. This may not sound like a big deal, but Martin had made almost every oil change in my car since he was in his 20s, as well as the oil in numerous other cars. He knew how to do it, and he didn’t make mistakes like this. Ben also recalled a previous problem Martin had with an oil filter, months before his cancer diagnosis.

Once again, I began research. I learned that HE (hepatic encephalopathy) was a fairly common occurrence – not just with liver cancer, but also with cirrhosis, a disease with which Martin had been diagnosed in 2000.

Suddenly, so many things began to make sense. His increased irritability, his chronic fatigue, his difficulty to understand written instructions or remember things we’d discussed, his inability to make repairs on his car that had been so easy for him in years past; even his deep fatigue, which had cost him a job he had loved in 2019.

My first reaction was anger: anger that none of his doctors had warned us about HE and what symptoms to look for, or what treatments might provide some relief. Then I felt deep sorrow and guilt – which I’m still working through – for my impatience with his forgetfulness, his failure to complete what I thought were simple tasks, his clumsiness. I knew how to react to someone with declining mental capacity from my time with Jim during his illness. I could have been kinder, less impatient, less demanding. Our last few years together could have been more loving, less argumentative, had I known I was asking more of him than he could give. It breaks my heart.

I will say that I gave my all to him during his final four months of life. We were fully reconciled, and I was happy to be able to care for him, to meet his needs, to pamper him. I just wish I had known much sooner how much he was struggling.

And so I have laid my heart bare, and it’s my sincere hope and prayer that someone’s eyes will be opened. That some person out there in FacebookWorld will gain insight into a friend’s or family member’s struggles and respond with compassion and understanding instead of impatience and anger.

If my words can relieve even one person’s anguish, it will be worth the tears that I’ve shed as I’ve re-lived my greatest pain. So please share.

Almost full circle

~ Cheryle Gardiner ~ Leave a comment

Tonight, after a very hard day that included two falls – one of which was a full-force face plant resulting in a possible broken nose – I am sitting by the bedside of my boy.

As he sleeps, I watch for each breath, just as I did long years ago when he was a baby. Tonight, when he said he was hungry, I cut up his food and fed it to him, just as I did when he was a baby. When I asked him to take “one more bite,” the face he made took me back 50 years. And, as I put the straw to his lips for a drink, he bit down on it and didn’t understand when I told him to suck through it. Just as he did when he was first learning how straws work, when he was a baby.

Despite my age, despite having seen the death of people I love, I’m struck anew by how leaving this earthly life really is a reversal of how we grow into it in our beginnings.

I pray that his new life, which seems so imminent now, is as big an adventure for him as this one has been. But I also pray that whatever there is on the other side treats him more kindly, that it doesn’t hold the pain for him that this one has.

You see, despite the fact that he was wanted and loved, that he was winsome, that he was the first-born, that he had nearly every advantage, he wasn’t immune from the pains of living. He certainly wasn’t the perfect child; he bullied and teased his brothers, he fought with me, he lived a fast and often careless life. But his other-than-honorable discharge from the Navy broke him and kept him from jobs that he badly wanted. His happy-go-lucky nature and good looks led him into a lot of unhealthy associations, and his sometimes casual relationship to the truth drove me – and, I’m sure, his dad – nearly crazy.

But he always loved his family and was always willing to help a stranger. I often told people that if they were broken down by the side of the road, the best thing that could happen to them

would be for Martin to drive by. He loved to help and was truly puzzled by those who wouldn’t just drop everything when he needed something. How one person could embody such contradictions has always perplexed me. But that’s the story of how he has lived.

So, sleep, my boy. I hope your dreams are fanciful and not frightening. I hope your poor, tired body is finding rest. I am blessed to be your mom, and I’m honored to walk this last winding road with you, holding your hand for as long as I can.

Waiting

~ Cheryle Gardiner ~ Leave a comment

 

Mothers wait.
We wait for the child to be born.
We wait for the first words, the first steps.
We wait for the first day of school
We wait for the first date, the first relationship.
We wait for the return home from his first time taking the car.
We wait to hear about love, about a job, about school…
We wait for so many things, for so many reasons.

We should never have to wait for our child’s death.

Today I have spent what will be my last Christmas with my oldest child. I have watched as he struggled in the bathroom, needing my help to brush his teeth. I have put his slippers on his dear feet, swollen with edema. And I have held back tears as he looked at me with love and said, “You do so much for me.”

I ached at his confusion over the weighted blanket his nephew got for Christmas. When I explained that it would be a weight on him, which he hates, he insisted that it would somehow elevate him, relieving the pressure of the mattress on the bed where he spends most of his time.

It was a blessed relief to laugh with him when he unwrapped the socks from his brother, when his niece asked what they said, and he boldly proclaimed, “Fuck this shit!” When his humor shines through – as it does from time to time – it heals my heart a little bit.

I wait and worry and weep and wait some more.
I am not ready.
I’ll never be ready.
Dear Lord, help me be ready.

Can we talk?

~ Cheryle Gardiner ~ Leave a comment

My son is dying. That’s a simple, unhappy, unwelcome fact. Sometimes he has good days, visits a friend or his brother and family; more and more often, though, he has a string of bad days. We’re in the middle of one of those strings. He’s nauseated. He aches all over, like the flu, he tells me. He’s listless. He hurts. He’s unsteady on his feet, holding onto me while he makes his way to the bathroom or his bedroom. He’s fallen twice in the past week. And when he called me to his room at 3:30 a.m. Sunday, he thought he was dying.

We talk about his funeral and what he wants, all the time knowing that a proper, in-the-church funeral won’t happen until there’s some resolution with the pandemic. We talk about what we think happens after death. Is there nothing? Is there something? If there’s something, what do you think it looks like, mom? Will I see my grandmothers? My aunt? Will I know them?

What once might have been philosophical conversations have suddenly, too soon, out of order, become real. Become imminent. I search for words of reassurance, comforting him as well as I can, helping us both come to terms with the inevitable.

Then, today, a phone call from an old friend of his. A man he’s known for years, a former neighbor, a man older even than I. Martin was sleeping in the recliner next to me. I told him, when he stirred at the ringing of his phone, “It’s Art.” He didn’t want to talk. It quit ringing, and immediately started up again. When it began for the third time, I answered his phone.

Art loves Martin like a son. I know that. Martin was there when Art’s son Mike died about 30 years ago. Martin and Mike had been good friends, and his death was prolonged and sad. Another young person dying out of time. Art and Martin bonded and have remained close over the years, although they don’t talk often – Art’s still in Miami, we’re in Portland.

Over the weekend, Martin’s dad had told Art how ill Martin is, that he’s dying. Art was calling to insistently, stridently, tell him that he knew how to cure Martin’s liver cancer. He’s cured himself of MRSA and a cancer on his face. His friend lived several years after a terminal cancer diagnosis by using this miracle method. It seems that Art knows what the finest doctors in the best cancer hospitals in the PNW don’t: the cure for cancer is baking soda. Just mix it in water and drink it three times a day. And – hey! what’ve you got to lose? Well, peace of mind for a start.

I – according to Art – have been brainwashed by the medical community. The CT scans, the MRIs, the blood work? The liver eaten away by cirrhosis? The metastases? Pah! For some undefined reason, the doctors don’t want to listen to Art and his baking soda cure.

I listened. I was polite, as my mother taught me to be. Told him that I would convey his message to Martin and let him know that Art wants him to call back. I did all of those things. And Martin said he’s not going to call him. I feel kind of sad about that, but Martin’s an adult and gets to make his own choices. But, frankly, we’ve been on such a roller coaster around here that I completely understand my son’s reaction.

So, here’s what I want to talk about: If you know someone is dying, from cancer or anything else, offer your good wishes, your prayers, a memory, a bit of levity. If you believe in miracles – I do – keep believing. But keep those beliefs to yourself, keep your miracle cures, that x number of your friends have had success with, to yourself.

This dying business is hard work. A lot goes into making peace with it, especially when you’re in what should be the prime of life. And when you do that hard work, when you begin to reach a place where you can face the unknown with even a little more courage than when you started on this path – well, it’s not a kindness to say, “I know how you can be cured,” or “I know God is going to heal you; God told me.” Because no matter how well-meant those words are, no matter how much you believe what you’re saying, it unravels some of that hard work. And you have to start all over again to reach that place of beginning to accept. You may think it’s a kindness, a ray of hope, but it isn’t. It’s actually hurtful. And it not only hurts the person who, in the midst of illness, has done that hard work, it hurts the ones who have sat with him, listened to the fears, cried lonely tears, and been quietly thankful to have seen the beginnings of peace and acceptance on the face of a beloved child.

Genesis

~ Cheryle Gardiner ~ Leave a comment

July 6, 2001

It’s been a long time since I’ve watched him sleep – not since he was a very small boy. I’ve seen him sleeping – in bed, on the sofa, in the car, even on the floor – but I haven’t really watched him sleep for years.

You know the kind of watching I mean: watching the play of dreamland across his face, mouth twitching into a smile or frown, foot jerking in some unknown race or in time to unheard music, fingers waving in greeting or farewell. That kind of watching.

Parents do it all the time when their children are small, wondering which of life’s momentous experiences are playing out on the theater screen of baby’s sleep. Our minds are as curious about their world as their minds are about ours. With a kind of awe we watch them sleep, trying to memorize and hold fast to those things that we know are transient and destined to live only in our memories.

As they grow and chisel out their places in the world, we become less awestruck and more impatient. Go to bed. Go to sleep. It’s time to wake up. You’re going to be late. I want to take a nap, play quietly or lie down with me.

They grow, we grow. We stop watching so closely, accustomed now to their presence. The newness is gone, the baby is a person – still loved, still lovable, but not so mysterious. This person has a world that intersects with ours, but we are no longer their universe, nor are they ours. There are events, perhaps, that are captured in the photo albums of our hearts – first steps, the first day of school, losing the first tooth, first love, first big disappointment, first important achievement. But soon, too soon, the baby is the adult and the film of his life is as choppy and scratchy as the old home movies we used to watch when he was small. Not quite in focus, some parts in black and white, cut off where the projector stalled and burnt a hole in the fragile film. Memories stored, to be recalled in quiet times, in lonely times, in happy times – whenever some event or place tickles and a faded memory bubbles to the surface of the mind. They’re there, these memories, waiting to be bid to rise.

Today they came flooding back as I watched him sleep. When the corner of his mouth curled into a fleeting smile and his chin twitched in response, I didn’t see the day-old growth of beard, now flecked with gray, but a sweet bow-mouth and fat rosy cheek. When his foot flexed and briefly jerked, it wasn’t the foot that had been cut on a piece of glass on the day of his senior prom, but the foot that I kissed and tickled while peals of laughter rang throughout my world. The dark lashes that lay softly curled on his cheeks were as wondrous to me as the day he was born. And the tousled hair that barely covers his head was, in my mind’s eye, the baby-soft hair of a newborn.

And as I sat next to him while he slept, I remembered and I cried. As we waited – he in his world of dreams, I in my world of pain – for the test that would tell us how badly damaged his liver is, I watched him sleep. And I was so grateful.