Homecoming

 

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.

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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

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

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

 

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?

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.

Then and Now

Twelve years ago, I sat in the living room of our next-door neighbors’ home, surrounded by friends, and openly wept as the United States elected its first Black President. That I, a woman bred, born, and raised in the segregated South, should have lived to see such a wondrous day, was almost too much to take in.

I had donated money, made phone calls, and pounded pavement in support of Barack Obama’s campaign, something I hadn’t done since 1960. As a 13-year-old, I had proudly stood on busy street corners with my mom entreating those passing by to vote for John F. Kennedy. Then, as in 2008, my imagination had been captured by what could be, what was possible, with a young, charismatic President in the White House. Then, as in 2008, my candidate won. But then, in 1960, I don’t recall shedding tears, but being happy and thankful. In 2008, my tears were of joy, of hope, of relief – and a smidgen of fear for what might happen to this young man. A Black family in the White House was sure to bring out the worst in some people, so I prayed continually for his safety and for a successful administration.

As we all know, Obama was re-elected to a second term in 2012, and, as with most presidents, his administration was a mix of successes and failures. Never, however, did I feel that he was working in bad faith. He was a man who cared about our country and worked – often against blatant obstructionists – to move us forward.

In 2016, I was originally a big supporter of Bernie Sanders. Deep down, I didn’t really think he could win, but I liked most of his ideas and felt that, even though a lot of them would never make it through Congress, he would move us in the right direction. I was disappointed and angry when the DNC put the full force of their money and power behind Hillary Clinton; however, she would be the one I would support. I couldn’t imagine in my wildest dreams that my country would elect Donald Trump. He was an obvious opportunist, racist, misogynist, and xenophobe. Surely we would continue to move forward and not revert to our shameful past. We’d come so far and we were so much better than that, weren’t we? Obviously not.

As the returns came in and it became obvious that I share this nation with people who were still living in the mid-20th Century, people who cared nothing for progress, or their neighbors, even people in their families, I was too stunned to cry. I was numb. I was angry. I was disbelieving. Surely there was an error somewhere.  It wasn’t until two days later, as I lay on a bed at my chiropractor, that the bottled up feelings were finally freed. Once again – though for a far different reason this time – I cried openly. After that welcome release, a righteous anger overtook me and I vowed that I would protest this misbegotten administration at every turn. My first act was to join The Women’s March in Washington DC – you can read about it here.  I took to Twitter and Facebook with a vengeance. I wrote emails and letters to Congress. I spoke out against him at every opportunity. I even joined the Portland Raging Grannies when Trump refused to condemn white supremacists in the wake of the murders of BIPOC by police officers, and in support of Black Lives Matter.

And as we entered the 2020 presidential campaign, I supported Elizabeth Warren. I still liked Bernie, but felt more drawn to Warren’s ideas and her passion. Besides, it’s past time for this country to elect a woman, and Liz was my choice. But once again, my candidate appeared to be too far out of the mainstream and the DNC selected Joe Biden. I’ve never been a big fan of Biden, frankly. Oh, he’s fine as a person, and is certainly the antithesis of Trump, but he just didn’t seem like he’d be as progressive as I’d like.

As we moved through the campaign, I worried.

As election day approached, I worried.

As returns started coming in, I worried.

When it started looking like a repeat of 2016, I went to bed, too stressed to even watch. When I woke up Wednesday morning, things were looking up. And as I stayed glued to CNN over the next several days, it started looking better and better, though still a nail-biter.

Finally – Finally! – Biden was declared President-elect, and I began to breathe more easily. Deep, cleansing, healing breaths. No tears this time, and no joy, either; just relief. Peace.

Last night, though. Saturday evening, as I sat prepared to hear Biden’s acceptance speech, Sen. Kamala Harris spoke first. Vice-president-elect Kamala Harris. And as she spoke, as she invoked the memory of her mother, of all the women who had gone before, preparing the way, as she spoke of the little girls watching, knowing that they could aspire to be anything, anything at all…

Well, I began to cry.

Happy unBirthday, dear granddaughter!

It’s been one of my life’s greatest joys to live near my youngest son, Ben, his wife, Briana, and their children, Grandson Addison and Granddaughter Drew.

From shortly after the kiddos were born until they reached the age when they could go to preschool – about two years old – I was privileged to be their “Granny Nanny.” I have not only had the pleasure of watching them grow and learn, but have established a closeness with them that fills my heart. We’ve established traditions that I’ve worked to maintain. One of those traditions is that each year for each child’s birthday, their gift from me is a day of shopping followed by an overnight at Gran’s house. It’s always been great fun for me and, I think, for them.

Since Addison’s birthday falls just before Christmas, we usually have our birthday outing sometime during the week after Christmas, although it’s sometimes been as late as mid-January. Drew, however, was born in June, shortly before my own birthday. That has always meant we could plan her birthday treat some time during our shared birthday week.

Until this year: The Year of COVID-19. Which was closely followed by my son’s diagnosis of liver cancer. Needless to say, there have been no overnights due to my current lack of sleeping space, and COVID has been preventing me from wanting to go into a mall for shopping or a restaurant for lunch.

Drew has been extraordinarily patient – not at all the way I was at age 11 – and we decided several weeks ago that part of her belated celebration would be to watch “Hamilton” together – her choice. Last week we planned to celebrate in two parts, since we couldn’t have an overnight, and that we would start this weekend. So this morning, her dad brought her to my house for Drew’s unBirthday, Part I.

First, we made and decorated cupcakes – because what’s a party without cake? Besides, her uncle had wanted white cake and I had bought a mix and some icing. After deciding what colors we wanted for the frosting, Drew and I went to work.

While the cupcakes baked, we shopped online for her very late birthday presents. She already knew what she wanted – books – so we cranked up MeowWolf.com for the first one, then over to Amazon.com for three more. She’ll be getting books for the next four days, and she kept her purchases within her birthday budget. As an added bonus, our Amazon purchases resulted in a donation to my church.

After the cupcakes had cooled, we created some vibrantly-colored deliciousness – a few for us to have here and the rest for her to take home and share with her family. Of course Uncle Martin will have his share, too!

After all our hard work, we fixed lunch and plopped down in the family room to start watching “Hamilton.” We only made it about halfway through. before it was time to take my girl home to get ready for her cousin’s fourth birthday party. Neither of us minded too much because it just means that we’ll have another day together to finish watching the show!

When we got to her house, she told her parents that she had gotten four books and made cupcakes for her unBirthday – and that she’d gotten a “birthday President.”

Funny. Smart. Creative. Curious. Loving. Compassionate. That’s my girl. I’m blessed in so many ways.

 

Genesis

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.

 

Discovering purpose

In 1983 when my youngest child was three years old, I decided it was time to go back to work. I had interviewed with a private school for a position that I particularly wanted, paid what I believed I was worth, and wasn’t too far from my home in Miami. I felt certain that I’d be hired, and waited for the phone call saying so.

I waited for what I felt was a reasonable time. Anxious for an answer, I called the decision-maker, only to be told she was on vacation and wouldn’t return till the following week. In the meantime, a church friend heard I was job-hunting, told me she needed a clerical person right away, and if I wanted it, the job was mine. Although I wasn’t at all familiar with her organization, I eagerly accepted and agreed to start the following Monday.

Over that weekend, I received a call from the school – and a job offer. I told her that I had already accepted another position, and despite her plea to come work for her instead – along with an apology for not calling sooner – I told her that I couldn’t go back on a promise.

And so I began to work for – and learn about – hospice. As is often the case in life, I hadn’t an inkling how important my decision to take one path instead of another would turn out to be.

I had taken a first step on a Path.

At this time, I lived in a small S. Florida town – a largely conservative farming and military community – attended a church where the membership was mostly conservative, and had abandoned the more liberal political and social views with which I was raised. I had left the Democratic Party and embraced the “family values” of Ronald Reagan and the Republican Party. After all, how could I, a married church-going woman and mother of three sons, be against family values? Wasn’t that what it was all about?

One of the central tenets of these “values” was a rejection of homosexuality, and a belief that it was a choice rather than an inborn trait. Because of my faith, I adopted a hate-the-sin-love-the-sinner attitude, including the belief that it was an abhorrent lifestyle that, with love and mental health treatment, could be changed. I was sure that I had struck the right balance.

Soon after I took the job with hospice – which at the time was primarily medical transcription and light office duties – filing, answering phones, learning about end-of-life treatment for cancer patients – we began to see our first patients who were infected with something called HTLV-III, or the “gay virus.” At first it was just a trickle of people – always men – one or two every few weeks, but soon we were seeing more and more of them. At the time, transmission was incompletely understood, but it soon became apparent that “gay sex” was the culprit – although our medical staff carefully avoided all bodily fluids, including urine and tears, just in case.

Over time, I was promoted and given new areas of responsibility, first as office manager, and later as the lead secretary and trainer for the patient care team. Our hospice was growing and our patient census was being filled more and more with those with the “gay virus” – now known as AIDS. Part of my job was now “intake” – taking calls from physicians and families who were referring men with this disease. I heard stories that reduced me to tears. Parents who refused to care for their sons with the disease because of the stigma attached to having a gay child; families refusing to allow long-time partners to visit a child who was dying; or kicking that partner out of a house or apartment that he had shared with their child; young men being left to die alone; fathers refusing to pay for medication that would postpone the inevitable – one even saying, “You aren’t going to live long enough to pay me back.” Even when some tiny part of me kind of understood, the larger, more compassionate me couldn’t fathom how a parent could treat his or her child like this. I was deeply conflicted.

Another step on a Path that was filled with curves,
hairpin turns and boulders

It was during this time that I was approached by the principals of this hospice and asked to take the position of Program Manager for their newly formed foundation. Since it would mean not only a generous raise and more responsibility, but an opportunity to provide resources otherwise unavailable to those who were dying, I eagerly accepted.

As the onsite manager, I had a small staff and several volunteers under my supervision. Much to my chagrin, almost our entire focus was on people with AIDS, and all of my volunteers were gay men. Although I kept my beliefs about homosexuality to myself, I silently, internally, judged them. Over time, as I came to know them better – especially Jon, Ed, and Gregg, who were a committed threesome – I tried to determine from their stories why each of them had “chosen” to be gay. I was never completely satisfied with these internally constructed rationales, and soon gave them up. They were fun and funny young men, and we enjoyed our time together. We attended fundraising events together, planned and executed community activities and parties, and they invited me to their beautiful home for a delicious dinner. It was during this dinner that Ed showed me two antique dolls that his grandmother had left to him. He told me that he didn’t know what to do with them, nor did he know why she had given them to him. I admired them, and told him of my love for dolls and that his might have some monetary value. Several weeks later, he confided that he needed money for his medication and had taken the dolls to a dealer to see what they were worth. Sadly, they had no real value, but Ed was able to find resources through a friend. Two days before Christmas, I found a beautifully wrapped gift on my desk, and the three of them standing in my office eagerly waiting for me to open it. Inside were the dolls. A gift beyond measure, and more than 30 years later, Edwina and Jonelle still hold a place of honor in my home.

My Path was growing straighter,
the hairpin turns fewer.

This is all preamble. This was all preparation. My heart was being changed and I didn’t fully recognize it until, in 1988, my oldest son – who was then 18 years old – tearfully, agonizingly, painfully, told me that he’s gay. To say I was stunned is an understatement. This beautiful young man who was sought after by nearly every girl who saw him – how could he be gay? Our family went to church every Sunday and some days during the week. He was involved in the youth group. His friends were primarily boys and girls in our faith community and in his church-sponsored school. He knew – dammit, he knew – that homosexuality was wrong! But I held him and cried with him and offered what comfort I could.

And then came the guilt. What had I done to cause this? There was a popular belief at the time that an overbearing mother was a strong factor in the “choice” to be gay. Yes, I’m strong-willed and come from a matriarchal family. Was I too strong? Was I really overbearing? Domineering? All questions for my psychologist, who rushed to assure me that I bore no “fault,” that medicine was beginning to accept that homosexuality is inborn, that it’s the way the brain is wired, that it’s not an aberration but a normal behavior, probably determined at conception. Prayer, spiritual direction, and counseling did their work. Instead of rejecting my son as I had heard so many parents do in my work with hospice, I embraced acceptance. Nothing about him had changed; he was exactly the same person he’d always been. The only thing different was that I had a new piece of information about my child. Yes, it was an important piece of information, but that’s really all it was. I began to find peace in my heart and in my mind. I felt sad for the times that he’d heard me speak out against homosexuality; how painful that must have been for him! How many times had he wanted to tell me about a crush – as his brothers had felt free to do – but held it back. Had his heart been broken and he was afraid to seek the comfort of his mother? It was a hard time of soul-searching.

I began to recognize my Path. I believed I saw where it was taking me, that it had clarity.

Then I began to be afraid. AIDS was still a real danger, and I cautioned him over and over again about its dangers and how to be safe. At one point I even told him, “Don’t you dare ever tell me you have AIDS! You know how to be safe; you know what to do. Do it.”

In 2006, after I’d moved to Oregon, he called me from Miami to tell me that his partner, a man he trusted, had infected him. He had full-blown AIDS. I cried. I asked how he could have let this happen when he knew to be safe. He apologized. He told me that he thought his partner was clean. He assured me that he was on medication, that it was no longer an automatic death sentence. He told me that he’d been afraid to make the phone call because I’d told him not to ever tell me he had it. I felt that I’d failed him once again. I told him I was sorry, and that I love him. I would always love him.

This Path of mine had hit a rockslide.
I couldn’t tell where it was leading me.

A year ago, in the fall of 2019, Martin was diagnosed with liver cancer. It’s unrelated to his AIDS diagnosis, and has resulted from “cryptogenic cirrhosis,” which means they don’t know why he has it. Initial treatment appeared successful, but this past July a CT scan and an MRI revealed that it’s back with a vengeance. In the space of only eight weeks, it’s grown to the outside of his liver, metastasized to the lining of his abdominal cavity, and there’s no treatment possible. Anything medicine can do would only cause more damage to his fragile liver. He’s in pain all the time – sometimes bearable, but often not. He sleeps about 20 hours a day. The cancer is pressing against his other organs, causing difficulty breathing, and extreme discomfort eating. His food intake has dropped to about one-fourth of what it was even a month ago because of the feeling of fullness after small meals. Despite this, he’s gained about 30 pounds since his diagnosis. Fluid is filling all of his body tissue rather than pooling in his abdominal cavity where it could be drained. His official prognosis is less than six months. Privately I’ve been told he may not make it till Christmas.

Three days ago, Martin signed on with hospice.

A simple decision made nearly forty years ago set me on a Path that now has a clear destination. I learned. I grew. I accepted. I can look back now and see it clearly from where I started. The hairpin turns, the curves, the boulders and rockslides – all are gone. I don’t look forward to see where it will end. Instead, I live each day, I welcome each day. I treasure each day.

This has been, is, will be, my Path.
Unknown, unexpected but filled with growth and lessons.

I call my Path “Love.”

Everything old is new again

With some prompting from my son, Jason, I’ve decided to publish some of the things I’ve written across the years. This is the first of… I don’t know how many.

Enjoy!

March 17, 1992

Cheryle Jones Cerezo

“Do not fear, for I have redeemed you; I have called you by name, you are mine.” Isaiah 43:1

Who cannot understand the magic of his or her own name? And how the speaking, or calling, of your name attracts your immediate attention – even if the name being called actually “belongs” to someone else? What parent in a crowded store hasn’t heard a plaintive “Mommy!” or “Daddy!” and responded in some way – a quick look around, a more attentive ear – even if your child is at home?

Our name is our most personal possession. Those who named us chose our name with care: perhaps a family name was chosen, or the name of a special friend or Godparent, or maybe your parents just liked it. No matter what the reasoning, no matter how much we may like or dislike our name, it had special meaning to the one or ones who bestowed it.

The bestowing of a name also creates a relationship between the named and that person. Ask any parent whose child has named a particular puppy or kitten in a litter. That’s the one you usually end up keeping. If you’re fortunate, only one was given a name!

My name is special – and somewhat different. My given name is Cheryle Ann. When people remark on the original spelling of my first name – and many do – I tell them that my mother did it to me; she put the “e” on the wrong name. Now that’s not entirely true. She put the “e” just where she wanted it, and depending on the circumstances, the sound of my mother calling my name was either the most comforting or the most feared sound in my life! She chose it for me. And no one has ever made it sound just exactly like she did, because she truly “called me by name.” I am hers.

Many of us have more common names. There are lots of Joes and Nancys and Jennifers and Jasons – a virtual plethora of Jasons, one of them belonging to me. Regardless, though, of how common or uncommon your name is, it has a different sound when it is spoken by the one who chose it.

So it is with God. He calls us by name, and in His voice our name is uniquely our own. We share it with no one else, as God speaks it. He speaks it with the love and longing He has for us, with the voice of the One Who knows us best and loves us anyway. When God calls our name, it may not even have the same number of syllables or the same sounds in it. He speaks to us in our spirit, where He resides, and the spiritual nature speaks and hears differently than the human nature. But we know it’s Him, and we know He’s speaking. When God calls us by name, He does so with all the knowledge of who we really are, and He says “Fear not.”

As Psalm 139:15 so beautifully says, “Your eyes beheld my limbs, yet unfinished in the womb; all of them were written in your book; they were fashioned day by day, when as yet there was none of them.”

Who could know us more intimately than God? Who but He could speak our name so profoundly that each syllable, each inflection, calls the totality of our being to attentiveness?

Listen when God calls your name. Hear how special you are. Know that He calls the entirety of you to Him.

“Do not fear, for I have redeemed you; I have called you by name, you are mine.” Isaiah 43:1