Death and Loss

Until Further Notice, Celebrate Everything

Danni Michaeli, a psychiatrist by training, is rarely at a loss for words. But they seemed to be escaping him in this moment, after I’d asked him to tell me about his partner, Dave Adox.

“There’s something about him that feels so very hard for me to put into words,” Danni, 51, told me, when we spoke by phone recently. “I’ve always described him as a Muppet,” he laughed. “He’s just a gangly, goofy, funny person. He’s very special. That’s the way I want people to know him.”

***


In June of 2014, Dave began experiencing some weakness in his legs. “He’d had back problems before,” Danni explained, “so we didn’t take it that seriously.” But then the problem began to worsen. Soon, Dave was having difficulty performing physical tasks—even simple things, like opening a container of yogurt. When Dave started experiencing fasciculation—involuntary muscle twitches—all over his body, the couple knew something serious was going on.

“I never imagined ALS is what this was,” Danni said, using the acronym for Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease. “But the doctors knew; before he was even diagnosed, they knew.”

When I asked how Dave’s health was currently, Danni offered the following description: “It’s swallowing him up,” he said simply. It’s a startling statement, but one that is unfortunately apt, for this rare neurodegenerative disease. ALS affects the body’s motor neurons in the brain and spinal cord, which are the nerve cells that control muscle movement. The illness is also known for the remarkable speed with which it can progress, causing increasing disability.

Orion's adoption day

“I always say ALS is a spiritual challenge that is impersonating a physical disease,” Danni said of his perspective on the illness. “When you go through the process, you have to accept increasing levels of dependence. You have to let go of a lot of things you expected of yourself.”

Indeed, today, a year and a half after he first received the diagnosis, Dave’s illness has already progressed to the point where he can only communicate with his eyes. Communication between Dave and the rest of the world has become very difficult. “He has a tablet that is mounted on a stand, and underneath there’s an infrared light that follows and tracks his eye movement, so he can type out on the keyboard, but it’s very difficult. It’s very stressful,” said Danni.

He also now needs around-the-clock care. “We’ve had three hospitalizations in less than a year to the ICU,” Danni said. “Two additional ER visits. And many, many medical appointments.” Danni and Dave have been confronting all of these challenges, moreover, while simultaneously raising their 18-month-old son, Orion.

There is no question that Dave’s ALS diagnosis has upended the family’s lives in profound ways. But, Danni told me, “These last few years have also been a lot of fun; Dave and I were just saying this, actually, that in some ways this has been the best year of our lives.”

It’s an incredible statement coming from someone whose life and family has been irreparably altered by an incurable illness. And it speaks volumes about how Dave and Danni have decided to approach their lives, with ALS now intertwined.

2016: David with Orion

***

Danni and Dave — who have been together for 18 years and married for three — first met at the Pyramid club in the East Village, New York City, in 1998. “They had this night called 1984 that was gay, anything goes,” Danni said. The two hit it off, exchanged numbers, and made a date for the end of the week. As the weekend approached, Danni had yet to hear from Dave, and so he figured he was being stood up. “I thought, fine, he doesn’t want to get together, no big deal. I made other plans.”

Unbeknownst to Danni, though, Dave actually had called, earlier in the week, and left a message with Danni’s roommate, who had neglected to pass the message along. (“Remember,” he said, somewhat wistfully, “this was before cellphones.”) Rather than feel slighted that Danni had scheduled another date, Dave wasn’t fazed in the least. “Okay,” he said simply, “Well, how about tomorrow?”

“I was so impressed with that!” Danni said. “It was so cool that he just rolled with it. That really left an impression on me.” The couple has been together ever since. “I don’t want to make it sound so uncomplicated,” he clarified quickly. “We broke up for awhile, and got back together. But there was always a lot of love along the way.”

2012: Danni and David's wedding bikes

Several years back, Danni and Dave began to pursue the idea of becoming fathers. “It was his idea,” Danni clarified. “But I ran with it.” First, they considered adopting an older child through the foster care system after being presented with that option at the “Wannabe Dads and Moms” group at the Lesbian, Gay, Bisexual & Transgender Community Center in Manhattan. They even made a move to South Orange, New Jersey, in part because they had heard the foster-to-adopt process might be easier there than in New York.

After many years of waiting and pursuing a placement from the foster care system, Danni and Dave were finally presented with the option of adopting a 16-year-old boy, who had a complicated record and had already been in foster care for many years. “I said to Dave, there’s a lot here. Do you want to do this? And he just said, ‘Yes, let’s give it a try!’” Though Danni and Dave have stayed in touch with their foster son off and on since, the placement did not ultimately work out. Still, the experience is indicative of how the couple tends to operate. “We don’t know what’s going to happen,” Danni said, “but why not give it a try?”

Next, they opened their home to four foreign exchange students, over a three-year period, which worked out well for all involved. “We are still very close to them,” Danni said. “They’re like family to us.” Encouraged by the experience, the couple seemed ready for something more permanent. “Okay,” Danni said to Dave. “Let’s try surrogacy.”

Dave and Danni (both in the middle) surrounded by their four exchange students

This route, fortunately, proved to be a fairly straightforward process for the couple. “We transferred two embryos from Dave, since my sperm was too crappy,” he laughed. “And we got pregnant on the first try.” Danni and Dave did, however, have a horrible scare about halfway through the pregnancy, when the couple got word that there might be a problem with the baby. Dave wasted no time, and hopped on the next plane to Texas, where their gestation carrier was living, to investigate.

After meeting with the OB/GYN sonographer, they determined the scare to be, mercifully, a false alarm. “We tested that baby from all different directions,” Danni recalled, still sounding a bit flustered by the experience. “But everything was fine.” So Dave flew back home to New Jersey, and the couple let out a huge sigh of relief.

Their respite from life-changing news, though, was short-lived. The very next day, in June of 2014, when he was just 43 years old, Dave was diagnosed with ALS.

***

Despite the hardships that accompany living with ALS, there is something compelling, bordering on audacious, in how Dave and Danni have chosen to confront the illness. It’s a perspective that can seem to defy, at times, the seriousness of the disease. “We’re both really interested in looking for the miracle inside this,” Danni said, for example. “And we’re trying to maintain our sense of adventure through all of this.”

As difficult as it is to imagine approaching ALS with such optimism, Danni insists that some good has come from the experience. The timing of Dave’s diagnosis, for example, happened to coincide with an incredible, unique cultural moment for ALS. Throughout the summer of 2014, millions of people — everyone from Martha Stewart to U.S. Senator Cory Booker — began pouring buckets of ice water on their heads in support of the very illness with which Dave had just been diagnosed, not a month earlier.

“It was miraculous moment,” Danni said, of the “Ice Bucket Challenge,” which helped fundraise over $100 million for ALS research. “Everyone — the entire world — was talking about ALS suddenly. It was just another piece of the miracle when you think about it.”

Dave used his own “ice bucket challenge” video as a way to come out about his diagnosis to his broader community, which has since come to rally around him and Danni in remarkable ways. “It can sometimes feel like Grand Central Station,” in their home, Danni said, thanks to the dozens of friends, family members, and neighbors who stop by to keep Dave company and help with his care.  “We’re living in this big bubble of love,” Danni said, “and it’s because of this whole thing.”

ALS walk 2015

Some of the support Dave and Danni have received from their broader community has caught them somewhat by surprise. “I can’t even tell you all the ways people have been helping us,” Danni explained, adding that many of these good deeds are done anonymously. “People we’ve never met are dropping food off, taking our garbage out, shoveling our walk. My entire kid’s wardrobe and toys are all things that people left on our front porch. It’s outrageous. It’s amazing. It’s unbelievable.”

Despite the difficulties involved with raising a toddler amid the turmoil caused by ALS, their son, Orion, is another great source of strength for not only the couple, but also those around them. “People respond, I think, to the fact that we have a baby,” Danni said, “I think it makes the whole experience very accessible, and makes people want to be with us.” (It probably didn’t hurt, Danni added with a laugh, that Orion is  “super cute.”)

Danni couldn’t extol the virtues of his South Orange neighbors fast enough (“If you ever want to move to the suburbs,” he told me, “this is definitely the one.”) But he also suspects there is something almost symbiotic about the relationship that he and Dave have formed with his community as a result of Dave’s illness. “ALS triggers something in people. It touches people almost like nothing else. It’s just such a scary disease, you know?”

It was a proactive decision, then, not to insulate themselves from the people who have been touched by Dave’s illness. “We are welcoming people to join us in this experience,” Danni said. “We are trying to live and create from a place of love, and people are very responsive to that. They want it. They get it, and they give back to us.”

AIDS ride 2015

 ***

While the couple’s approach to ALS is remarkable by any standard, Danni was careful not to glorify in any way the experience of living with the illness, or paint an overly rosy picture of the couple’s outlook. “Make no mistake, this is a horrible disease,” he said. “We still get depressed, and sad, and angry, and have any number of other feelings.” The same complexities found in any relationship, he noted, don’t suddenly vanish with an ALS diagnosis. “We still have fights. I get frustrated with him. He gets disappointed with me. We have a lot of those moments, actually.”

ALS, a terminal disease in most cases, also forces those living with it and their families, Danni noted, into difficult conversations. “You have to welcome death much earlier than you’d thought you’d have to,” he said. The mental faculties of people living with ALS, he explained, typically remain sharp, so the choice is theirs as to whether or not to go on life support, or whether or not to come off.

“It’s a really unique thing about ALS,” Danni said. “You often have to choose the time of your death. So we’re trying to figure out how to prepare for and welcome death. It’s in our home all the time now. It’s right there. It’s just right there.”

It’s a decision, Danni stressed, not easily made in advance. “You don’t really know how you’re going to feel,” he said, explaining that for Dave, the worst part about the illness has been not knowing what the next stage of the degenerative progression will be like. “Each time, he’d thought he’d never be able to handle what was about to happen to him, and he has. So you can’t really know how you’re going to feel.”

Despite the advanced stage of his illness, moreover, Dave’s outlook remains resilient. “He always tells me, ‘I know I look far more depressed than I am,’” Danni said, since he is no longer in control of his facial muscles to show expression. “I know he’s frustrated and uncomfortable. I know he’s struggling. But he says he enjoys himself. He told me that just yesterday. He’s doing okay.”

Family 2015

***

“How do I say this in a way that’s meaningful?” Danni asked rhetorically, towards the end of our conversation. “I just wish I could communicate what a funny, silly, and just loveable guy Dave was when he was able to be that person. And how much he still tries, as best as he can, to bring humor into his experience today.”

For instance, last week, it was Dave’s birthday, and he decided to celebrate by throwing a party and asking all of his guests to wear wigs. “Everyone was happy to do it,” Danni said, “And our house was packed to capacity.” As a surprise, Danni hired a musical improve group, and about halfway through the party, each attendee told one of their favorite memories about Dave. “Then these guys performed a whole musical play about him on the spot. It was the most amazing party I've every attended.”

Danni also pointed to a quote that Dave has been using since his diagnosis as a personal mantra. “He found this sign on Facebook that said, “Until further notice, celebrate everything,” Danni explained. Dave promptly posted the note as his cover photo, and ever since, the saying has become something of a rallying cry for their family and community. “Everyone around us using it,” Danni said. “It’s become our brand now.”

“Celebrate everything!” Danni repeated with gusto. And until further notice, that’s what the couple plans to do.

Orion wearing their slogan: "Until further notice, celebrate everything."

Here’s another inspiring story of courage. Click here to read it now.

Feature image photo credit (without text): Abby Kraftowitz 

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For Richard Tomlinson, family is about choices. Seventeen years ago, Richard and his husband-to-be Omer chose a path that made them a strong unit: They chose to create a family, and they chose to adopt two older brothers. They were together almost 13 years when tragedy struck. Richard lost his husband and almost lost a relationship with his eldest son. But it was through their conscious choice that they were brought back together: The choice to place family above all else. This is a family story of about his love, loss and moving on.

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Personal Essays by Gay Dads

A Brief History of Gay Times

Ferd van Gameren, a co-founder of Gays With Kids, gives a personal history of gay pride celebrations over the years

In 1994, my then-boyfriend Brian and I drove to New York City for Gay Pride.

We had met the year before at Mike's Gym, an almost exclusively gay gym in Boston's South End. A friend of Brian's somehow knew I was from Holland; that's how I believe my nickname Tulip came about.

(Come to think of it: Brian used to say that he'd prefer tulips on his organ to a rose on his piano.)

A quick glance at me in the locker room taught him what religion I wasn't.

And a friend of mine had already divulged to me what Brian had told him in confidence: He was HIV-positive.

Anyway, we met. We really liked each other. Then, on the third date, Brian revealed to me in a shaky voice what I already knew. We had our first, very careful sex that night.

We fell in love. We had dates in the South End, then a largely gay neighborhood. We made friends that were mostly gay. (But not exclusively; we befriended some lesbians too.) We went to see "Billy's Hollywood Screen Kiss" and other little indie films that were, yes, gay, gay, gay.

With an AIDS diagnosis looming, we had no time to lose. Some of our new friends were getting sicker. Some died. Barely six months after the first kiss, we moved in together.

At that New York Pride, gay life was celebrated in the face of death. We saw men marching with dark Kaposi sarcoma lesions on their bared chests. We saw young men leaning on canes, too sick to walk, watching the parade from the sidelines. Men blind with cytomegalovirus loudly singing along to "Pride ­­– A Deeper Love" coming from the floats. We chanted and cried and watched a giant rainbow flag being carried along Fifth Avenue. And in our cut-off jeans and Timberland boots, we danced to Aretha and Whitney.

And then, thanks to enormous medical advances, the unthinkable happened for us: Brian stayed alive and healthy. As our horizon of life opened up, we learned to look ahead farther. We made plans for a future together that wasn't just measured in weeks or months.

We loved New York, and so we found jobs there and moved to Manhattan. Forced by my immigration issues we decamped temporarily to cold but wonderful Toronto, repatriated to New York five years later, and in 2017 returned to the Boston area.

We went from boyfriends to partners (for many years our term of choice), briefly to ex-partners, to partners again, and finally, in 2013, to husbands.

We got our first dog in 2005, a saucy Chihuahua named Duke, and showered him with love and attention. It awakened something in us that had long been dormant. But could we, at our age? Would Brian stay healthy?

Our answers were yes and yes. In 2009 we adopted a baby boy. Seventeen months later our two daughters were born.

In 2014 Brian began this website, Gays With Kids. So we're still gay, and our kids clearly have gay dads. They dance a mean Time Warp; instead of straight ahead they say gaily forward. They realize everyone is different, and they seem to like it that way.

But we live now in a predominantly straight suburb with an excellent school system. We socialize primarily with straight-but-not-narrow friends. Brian and I tell each other all the time we should really go back to the gym. We watch our little, almost exclusively gay indie films in bed on Netflix and Amazon Prime, after the kids have finally fallen asleep.

We're going to take our kids to New York Pride later this month. I envision something like this: Proudly holding their hands, we'll watch the floats in age-appropriate shorts and sensible footwear. We'll cheer on courageous Mormon or evangelical LGBT contingencies while the kids are busy licking lollipops. They will learn about Stonewall, AIDS and the road to marriage equality. Following the kids' lead, Brian and I will make some moves to "Old Town Road." With them, we'll belt out "Baby, why don't you just meet me in the middle?" And we will dance in the street to Madonna, Cher, Whitney and Gaga, the soundtrack of our lives for so many years.

Over the course of that weekend, in age-appropriate terms, we will tell our kids more about the lives of their daddy and papa.

Personal Essays by Gay Dads

Do We Have a Biological Right to Fatherhood? Absolutely, Says This Gay Dad

Jay Bostick, a gay foster dad, responds to Kevin Saunders' controversial essay "Why This Adopted Gay Man Will Never Have Children"

Editor's Note: Below is an essay by Jay Bostick who eloquently lays out many of the reasons why he and many other readers were upset by a post we ran yesterday by Kevin Saunders titled, "Why This Adopted Gay Man Will Never Have Children." This post clearly touched a nerve! (Check out the ongoing discussion on our Facebook page.) While some of our readers appreciated Saunders' viewpoint, many others felt slighted by his reasoning for not having children, calling him everything from "self-involved," "selfish," and an "insufferable narcissist." Many other readers rightly questioned why Gays With Kids would even run an essay from a man who does not want children on (of all place) a parenting website.

The former point is a matter of opinion, but I'll offer some clarification on the latter. We agreed to run this post for two reasons. First, Saunders' perspective is unique among many adopted gay men. We have run countless essays on this site featuring adopted gay men who, inspired by their own upbringing, decided to give back by opening up their homes to children who need them. Saunders' experience, however, led him to conscience decision not to have children, a perspective worthy of discussion particularly by anyone who has been touched by adoption in some way. Secondly, as a 52-year-old gay man, Saunders is starting to find himself alienated from many in his LGBTQ peer group for his decision not to have kids. Again, we are so much more familiar with the opposite perspective on our page: when they become parents, many gay men find themselves ostracized from the broader, childless LGBTQ community. That the inverse is also starting to become true is a testament to the increase in LGBTQ parents in the United States, and an interesting dichotomy we believed warranted further exploration.

All that said, Saunders' essay is a matter of opinion, and one our readers (nor we) certainly don't have to agree with. This is why we were thrilled to receive this "counterpoint" to Saunders's essay from Bostick. We, at least, are enjoying the respectful exchange of ideas, and hope you are as well. Give Bostick's essay a read, as well as the original, and then let us know what you think in the comments or at dads@gayswithkids.com.

--David Dodge, Managing Editor

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Adults

Why This Adopted Gay Man Will Never Have Children

Do we have a biological right to parenthood? Kevin Saunders, a childless 52-year-old gay man, says no.

Guest post written by Kevin Saunders.

Two dear friends of mine, each partnered, capable gay men of relatively sound mind and body, have recently decided to become fathers, and I could not be more unnerved. The expense, the risk, the potential for disappointment, the logistical complexity that they must navigate leave me baffled and at times enraged with the lingering question that I have, out of respect, refrained from asking, "WHY, WHY, WHY do you want to do this?!" These feelings toward what most would consider a happy occasion beg a reciprocal enquiry: "Why do you care?" The answer is rooted in a disposition and a history that has left me skeptical of the innate right to biological parenthood that many, gay or straight, seem to feel entitled to.

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Gay Dad Life

Gays WITHOUT Kids (If Just For a Day...)

Andrew Kohn explains why he decided to leave his kids at home this Pride

I'm not a monster. Yes, I saw the wagons carrying lovely toddler children waiving their flags and eating their graham crackers. The children were plentiful wearing their Pride family shirts, bejeweled in rainbow. The weather was perfect and the crowds were as prideful as ever. But my husband and I had a day where we didn't have to worry about someone else, not on the constant lookout for the next available bathroom or calming emotions because we could buy one unicorn costume and not every unicorn costume. We had a day without kids.

Yes, Pride has become commercialized. Some companies want my gay money, but others march and have a presence because one gay voice spoke up and asked why the company hasn't marched. I marched in the parade with my employer – who marched for the first time this year – because I started the conversation about why we hadn't marched before. My husband and I were present. We honored Stonewall. And praised Nina West. And we did it without carrying a bag with extra panties and a couple sippy cups.

Believe me, I get sharing the day with your children. With your family. But in my house, we live Pride every day. Two white dads caring for two black kids makes us walking billboards for equality, love, and acceptance. I don't need a day to celebrate my family with my children. We do it in the grocery store. We do it at preschool. We recognize our uniqueness and celebrate it. My children don't need a meltdown and a long walk to tell them about their history and their fathers' connection to the past.

Instead of worrying about where we would find lunch and, again, where the closest bathroom was, I saw beauty that took me by surprise – and I was able to be in the moment with it. Trans men waking boldly and bravely around only wearing only their bindings. Watching high school kids sitting in the grass, wearing crop tops and eating french fries, literally carefree looking up at the clouds. We experienced a community that was free and uninhibited, if just for one afternoon, where who you are isn't odd or something to be hidden. But rather something that is a definition of you and should be your reality 365 days a year.

I know that being gay and having kids can be overwhelming at times. We ask ourselves if we're representing our community adequately (or have we become too heteronormative?). If we have children of a different race, are we giving them the experiences they need to know who they are, as well as navigate that world with gay parents? Are we so embraced at school functions because of our contributions to community or are we a token family? And yes, I'll ask it, are we good enough for acceptance by all gay families, who as if we're single again, judge each other on wealth, looks, and status? No family is better than any other, and gay parents certainly have opportunities to be better towards one another.

Our Pride ended in a small fight while walking to the car, like all good Pride's should. But it wasn't about kids bickering, or kids getting upset they didn't get the right treat. It was about us centering ourselves in a community that isn't exactly welcoming in certain spaces to gay families other times of the year. It was about us catching up with our past while also seeing our collective future.

And the kids didn't seem to mind. They had fun with a babysitter and lived their Pride out loud when they shopped for daddy and papa gifts for Father's Day. That's our Pride. Maybe when the kids are older, and really get the meaning of Pride, we'll start marching together in solidarity. But for right now, daddies needed a little time alone to reconnect with their LGBT family. And while there may be too many beer ads and not enough voter registration tables, we celebrate visibility and love. And my husband and I had time together, reminding us of who we are, who our original family was, and how we will connect who we are now, and our children, with that family as it grows.

At the end of the day, we're all in it together. And my children will be enriched by the experience. Just not this year. This year, we fertilized our roots so that our branches can grow.

Fatherhood, the gay way

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