“A rose by any other name would smell as sweet,” said Juliet, referring to her lover’s surname, “Montague,” his family bitter rivals with her own, the Capulets. And while she is right—a name alone cannot change the odor of a plant—I suspect far fewer noses would sniff something referred to as, say, skunkweed.

For writers, titles are excessively important. We are compelled to come up with something catchy in order to capture the attention of our precious and elusive targets: readers. For while there are high-paying jobs awaiting every exceptional computer engineer in the world, the most talented writers are, I’m afraid, the cliché dime a dozen.

I once, for example, gave an essay the shocking title “Die with Me,” which sounds like it might be a piece on group suicide. Indeed, it was a death wish–that the dying in my life allow me to attend and midwife their transition, as I was unable to do for my grandmother. She died alone, not wanting to bother anyone with the business of exiting this life.

Newspapers, it turns out, relieve a writer from the tedious work of titling.  There, titles are called headlines and copy editors come up with headlines that physically fit the printed page and, for the online version, contain words their search engine optimizers tell them are terrific bait for clicks. It’s like in the film industry where one production company creates a movie and an entirely different company creates the “Coming soon to a theater near you,” make-them-want-to-see-it trailer (I love trailers).

Some writers have a knack for writing clever titles. The task, however, makes me anxious and several times I have changed titles of essays posted online (where I can edit in perpetuity).

But, like many things, it’s easier to be the critic than the creator.

The headline for my first column in the best daily paper in Ohio, the Akron Beacon Journal, introduced me and my “unusual family.” Hmm, if we are unusual, I wondered, what does a typical family look like? Our family has two loving parents, which is not as standard as it once was, I concede. Five children fathered by two different men? Blended families were common way back in the 1970s when I was a girl. Two sons with learning disabilities and a daughter with a chromosomal abnormality? Given the improvement in diagnosing several disabilities in recent decades, that puts us in league with about half the families I know.

While my family history is not common knowledge and some facts are a bit salacious, I doubt any of it makes us unusual. In fact, after 8 months of rumination, the only “unusual family” I can think of is the fictional one in the novel Geek Love by Katherine Dunn (check it out).

Other than that, the headlines have been mostly fine and happily not my province. Until June. That’s when I wrote about taking our kids up to their grandparents in Northern Michigan for a few weeks. Most years, either Max or I drove the 450 miles each way in two days because we had to hurry back to our jobs. This year, for the first time in our relationship, we both work for ourselves and, therefore, were able to stay a few days longer because we can now work remotely. Sure, we walked the dogs on the beach a few times, but I would not call it a trip that included “relaxation by the lake” as the headline indicated.

Following up on the false equation of Time Away = Relaxation, the headline of my last column read: “Camp allowing family to relax, refresh.” To call our Buddhist family camp relaxing is like saying your Jewish neighbors relax each year at a kibbutz in Israel. Hauling gear and small children up and down a mountainside several times a day while sharing bathrooms with hundreds of other families is not relaxing. Nor is the six hours of work each camper has to do while there. That’s on top of the daily ½ hour of cleaning areas assigned by the class your child attends. It’s all good, but hardly relaxing.

I’ve spent a good bit of time at Buddhist meditation centers over the years and the truth is people go a little crazy when there. Meditation divorces the mind from the pell-mell busyness we are all so accustomed to, if not addicted, in our modern lives. Quiet the mind and things arise that are easily avoided at home. Family camp is particularly crazy as kids never stop moving and, three days in, they begin melting down all over the mountain. The dates for camp used to change each summer until it was decided to always schedule it as late in the summer as possible. Why? So it occurs when the sun sets a little earlier, helping the kids to sleep more.

This year, I was in the dorm bathroom rather late one night when it was blessedly quiet. Only one other woman was there with her two small children. Her daughter, who was about six, fussed at getting her breathing treatment, after which, she resisted inhaling her Flonase. “Oh, I love Flonase,” I said, trying to distract the child, “It smells like lilacs!” Her weary mother, whose husband could not attend camp because of work, was still cajoling her daughter to cooperate when I left the bathroom. A few minutes later, she walked by me in the main house living room, carrying her son in her arms while her daughter followed behind, repeating chant-like, “I’m sorry you’re my mommy.”

The next morning when the kids were in class, I ran into the mom and asked if I could hug her. Needing no more encouragement, she fell into my arms where I held her long and tight. When we released she looked like Roy Lichtenstein’s “Crying Girl,” tears pooling in her eyes and cascading down her face. “I know she’s not sorry I’m her mom, but I just wish I could be more patient with her.” Ah, what parent hasn’t said that out loud? The truth is, this woman was patient with her daughter. And frustrated. And deeply human. Little kids are tough, man.

Relaxing with young children is like the proverbial butterfly that cannot be chased. I relax best at dinners with my family. But vacations? Never. Sitting with a book on the beach makes me feel sweating and itchy just thinking about it.

I have no interest in climbing Mount Everest, but I’ve climbed a mountain in Michoacán, Mexico at dawn one winter’s day to see the monarch butterflies awaken and flood the air.

For several days, I walked alone on the streets of Rome when I was seven-months pregnant with Jules, finding ancient, medieval and Renaissance structures around every, and I mean every, corner.

Ten summers ago, when I was still the only one with a driver’s license, I took my three boys on a cross-country road trip in my 5-speed Matrix. For many reasons, that journey has become a pivotal memory for all four of us. I packed carrots, apples, cheese sticks, bread, peanut butter, jelly, Nutella, and Red Bull. My pact with the boys was if we could spend less than $20 at restaurants each day during the week, we’d splurge on weekends at a fancy dinner. They were game and we all lost weight, even Jules who was air-fern thin before we left Akron.

Three summers ago, I joined my eldest son, Claude, in Spain after he’d studied in Granada for a term. Madrid-Toledo-Valencia-Barcelona-Bilboa-Madrid, we circled that lovely Iberian country seeking art and tapas. Gracious Spaniards, delicious food (shout out to Marta Diaz Valderas at Casa Aurelio near the cathedral in Toledo!), fabulous museums and architecture greeted us at each stop along the way. The entire trip, including my airfare and all our trains, cost $3,000.

Life is like a bull I want to grab by the horns, throw down, cut open, drink the pulsing blood from its veins and the marrow from the bones I crack open. For even if I am the healthiest 51-year-old alive, and also the luckiest, that still only leaves me with 40 more good years of life.

Relaxing vacations are for those who watch life pass by. I will not wait for death because I know he waits for me.

When Lyra was a few months old, I first wrote an essay titled, “Learning About Lyra.”  Now, more than four years later, we have traveled far down the road of our journey with our daughter. This short piece was published in the Akron Beacon Journal on March 12, 2017 and can be found on Ohio.com. Please feel free to share it, especially with anyone who has learned their baby has Down syndrome.

“Is there a vagina?” I asked the midwife the moment I pushed a baby out of my womb for the final time.

My fifth child is my first daughter. Or so the doctors had told me during an ultrasound 18 weeks into my pregnancy. But reading ultrasounds is a subjective art and there are no guarantees. We knew this.

Pregnant at 46, I refused amniocentesis because of the small chance the procedure could cause me to lose the baby. The blood work and ultrasounds in the middle of my pregnancy did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and “beautiful is better than good.”

Bluish and slippery when the midwife handed her to me, the baby energetically bleated dissatisfaction. With eyes squeezed shut, she easily began to suckle my breast. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect.

When she finally opened her eyes, I mentioned they looked “Downsy.” Then I noticed the ghostly pallor of her pupils and the bulk of skin on her neck. The midwife, who had listened to Lyra’s heart the moment she was born, said, “I’ll fully examine the baby in a few minutes, just hold and nurse her for now.”

In the middle of our bed, Max and my son Jules huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

Our daughter has Down syndrome. And she was blind. The murky white of her pupils was due to bilateral cataracts. When she was born, I knew nothing about Down syndrome; what little I thought I knew was just outmoded and inaccurate stereotypes. Nor did I know anything about raising a child with visual impairment.

On Lyra’s second day of life, we met with a genetic therapist. She took her time answering our questions, which was the start of our education of what it really means to have Down syndrome today in the United States. It is radically different from when Max and I were growing up. For example: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.

The weeks after Lyra’s birth were chock-full of appointments, verifying she had Down syndrome (DS), that she had no life-threatening conditions (about half of babies born with DS have heart defects, most of which can be fixed) and, most urgently, taking care of her cataracts.

At 6 and 7 weeks of age, Lyra’s natural lenses were removed, one surgery at a time, at Akron Children’s Hospital. Because implants are not recommended in children so young, Lyra wore contact lenses until she was 3, when she switched to glasses.

At 3 months, Lyra weighed 9 pounds 12 ounces, less than two of my boys weighed at birth. She didn’t reach her baby milestones at the same age as her brothers due to hypotonia, or low muscle tone, found in nearly all babies with Down syndrome. Yet she remained in the range of normal development compared to typical babies.

Accomplishing this was due in part to participating in Akron Children’s Hospital’s physical, occupational and speech therapies for over two years. We became so close to her therapists that I had mixed feelings when Lyra no longer needed their services. I was thrilled for her success but sad to leave our team.

The truth is, nobody knows what the journey will be with any child. I have two sons with severe dyslexia who required significant interventions. I have another son who turns to gold anything he sets his mind to — music, sports, academics and visual art. Yet it is this ridiculously talented son who regularly commandeers immense amounts of my attention and energy. Watching not only who they become but also how similar and how different each child is from the others is one of the joys of raising a large family.

Today Lyra is 4 and Max and I both feel like we have graduate degrees in Down syndrome studies. But more importantly, we now know our daughter. She’s a talkative extrovert with a chipper personality, unless you try to make her do something she does not want to do. Then she’ll fight you with the might and cunning of an oiled otter. She loves music and, if she likes you, she’ll ask for your hand so you can sing and dance Ring Around the Rosie with her.

Did we grieve over Lyra’s diagnoses? Max immediately and steadfastly saw her as perfect. At first, however, I felt robbed of doing the things I imagined I’d do with a daughter. But I was wrong. Lyra is the daughter I always wanted who does everything any daughter could do, just sometimes at a slower pace.

In future columns, I will further introduce Lyra, and others who shatter the perception that a life with DS is a limited one.