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Lisa Alford’s favorite poem is Max Ehrmann’s “Desiderata.”
“Go placidly amid the noise and the haste,” Ehrmann wrote in the 1927 poem, “and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons.”
Lisa said the poem reminds her she must be open to everyone, on a personal and professional level.
“We must listen to and learn from those we serve, in order to truly help them,” she said. “Give people the opportunity to speak their truth. People want to be heard and acknowledged.”
In a family filled with educators, social workers, and medical personnel, Lisa learned from an early age the power of learning, leading, and service. Growing up in Augusta, Georgia, she has fond memories of great family support, involvement in their church, and the “family legacy of helping making the community in which I live better.” Lisa’s experiences in serving others have taught her that we aren’t given opportunities just for ourselves.
“If I am given opportunities, gifts, skills, even relationships, how do I build on that?” she said. “I may be in certain places and spaces where I can say or share the truth that other people may have that may not have that direct opportunity.”
In order to fulfill her desire and passion to help make people’s lives better, Lisa has worked with a number of nonprofits, including the American Heart Association, the Health Foundation for Western and Central New York, the OASIS Senior Education Program, Governor Cuomo’s New York State Behavioral Health Advisory Council, the League of Women Voters, the CNY Population Health Improvement Regional Advisory Committee and the Junior League of Syracuse, Inc.
Lisa currently serves as Commissioner of the Department of Adult & Long Term Care Services, whose mission is, “To provide support to improve the quality of life and overall well-being for adults and those with long term care needs.”
While the majority of those the department serves are adults, not all of them are elderly, and about 10 percent of people served in the long term care unit are under 18 years of age. The department includes services for mental health, veterans, long term care and protective services, including safety monitoring, NY Connects and advocacy.
If the Department of Adult & Long Term Care Services doesn’t provide a resource or service, they will point people in the right direction. Further information can be found at ongov.net/adult/ or by calling (315) 435-3355.
While Lisa’s job primarily focuses on the elderly, she also works with the younger population. She is an active member of the graduate chapter of Alpha Kappa Alpha Sorority, Inc., whose focus is on education, service, and the success of young women. Lisa is often given opportunities to mentor young women, primarily young women of color, who are upcoming leaders or are already leaders.
She is also a member of the Board of Directors of the Women’s Fund of Central New York, serving as Vice-President. The Women’s Fund of Central New York afforded her the opportunity to fulfill her desire to be a TEDx speaker. In her TEDx talk, “Lessons From Mr. C,” she shares the lessons she has learned from her son who, born at 24 weeks and weighing only one pound, is the epitome of “resilience and keeping trying.”
She recalls a line her son loves from the movie “Shrek,” in which Shrek is talking to Donkey and says, “They judge me before they even know me.”
Lisa likens the line to the scripture verse Hebrews 13:2—“ Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.”
“Your help may not always look like you — it may not be from your neighborhood or ethnic group,” she said. “Help can come in lots of different forms, as can inspiration. We limit ourselves. Many people will miss their lesson or miss their blessing because it will not come in the package in which they think it will come in. I don’t want to miss a thing that God has for me.”
While her life is dedicated to service to others, Lisa acknowledges the importance of taking care of herself. She prays and meditates, and feels these things can be done anywhere, anytime. She loves her Yogalates class and describes it as “my mental church,” a calming time and space at the end of the day. She enjoys learning about history – especially history as it pertains to African Americans in particular communities, community history, and family history, and relaxing with movies and podcasts.
Lisa knows that taking care of herself and her needs allows her to continue to serve others in the community. She believes in service but also believes that taking care of ourselves first is not selfish, it’s self-full. Sometimes we have to say yes to ourselves first so we can yes to other things later on. She likens self-care to the instructions issued on airplanes about putting on our own oxygen masks before assisting others. She explains we should serve from our saucer, not our cup.
“When you fill your cup and it overflows to your saucer,” she said, “you are able to serve others.”
If you’re familiar with my writing in here, you’ll remember that I used to write about the Fashion and Lifestyle piece conjunction to the magazine’s theme of the month. After some planning and wondering, I will now be able to write what I am professionally and passionately knowledgeable about: mental health and wellness! The magazine’s theme this month is family, and I am choosing to provide information on post-partum anxiety.
So what is postpartum anxiety/PPA? Like postpartum depression/PPD, postpartum anxiety can involve physical symptoms such as changes in eating and sleeping, dizziness, hot flashes, rapid heartbeat and nausea, as well as the inability to concentrate on a certain task. For most women, these feelings kick in sometimes between birth and baby’s first birthday, but in some cases, they begin much earlier. Even though PPD is more often diagnosed than PPA, the two go hand in hand, as being depressed can exacerbate the anxiety, and vice versa. Some worry is adaptive, as it’s a natural response to protect one’s baby, and often that is expressed with hyper-alertness and hyper-vigilance. For example, a new parent may think, “What if my baby suffocates? Or slips under the water during a bath? What if someone steals him or her?” For some parents, that is just mental noise. It’s dismissible, so the thoughts cease from creeping in. On the other hand, if you know your worries are irrational, like you have an intense fear that your baby will get hurt if you don’t hold them, but you cannot get that worry out of your brain, it becomes a concern because this is when anxiety overrides reality.
What can trigger this anxiety? A huge hormonal shift! Estrogen and progesterone levels increase 10- to 100-fold during pregnancy, then fall to essentially zero within 24 hours of delivery. It can literally feel like someone has hijacked our brains. This is in addition to the following days that include sleep deprivation, changes in relationships, new schedules and responsibilities, including the round-the-clock care of a newborn. And then add that to society’s expectation that this should be one of the happiest times of your life and that you should know what to do instinctively as a mother, and it’s no wonder that so many mothers start to come unglued and stressed out! While any new mom can develop postpartum anxiety, those with any personal or family history of anxiety, depression, PMS symptoms, eating disorders or obsessive-compulsive disorder (OCD) are at higher risk of developing postpartum anxiety.
So now that we have got all that fun stuff out of the way, there is treatment and ways to manage this because, let’s face it, you have enough on your plate. If you’re feeling overwhelmed with worry, tell your OB-GYN or primary doctor, and ask for a referral to a therapist who has experience with perinatal mood disorders or a mental health professional who specializes in anxiety/women’s issues and is trained in cognitive behavioral therapy (CBT). Cognitive behavioral therapy gives you the skills to change the thinking and behavior patterns that lead to anxiety. It can help you look more realistically and positively at rational concerns rather than freaking out and going from 0-100 with worry.
A few things that can help with worry and anxiety are meditation, yoga and mindfulness training. Exercise can also relieve anxiety by helping you feel more empowered and it can release those feel good endorphins. Even a walk every day or every other day can help.
It is my hope that this information does not cause you to feel anxious (how ironic), but to educate you on the reality of potential symptoms we as women experience. Education is important because the more you know about your mental health concerns, the better you are at parenting yourself. Which in turn, helps you to be a better parent to your child.
Nichole is a mental health provider and writes about mental health and wellness issues on her blog, found at mentalhealthwellnesstherapy.com and self-mom.com.
David’s Refuge is a one-of-a kind organization, focused on giving parent caretakers a break — typically through a weekend getaway at a local bed and breakfast.
“Parents are calling us from Texas saying, ‘When is David’s Refuge going to be in Texas, because I need this,’” said Executive Director Kate Houck, one of the organization’s six-women team.
Parents of children with special needs and/or life-threatening illnesses have the opportunity to spend a couple of nights away from the responsibilities involved with caretaking — all expenses paid. They receive gift cards for local restaurants and other attractions, and have the chance to connect with other parents on the same journey.
“They [parents] are the glue for the family; when you restore Mom and Dad, what you end up doing is restore the children in the home,” Houck said. “And stronger families equals stronger communities.”
Houck is familiar with organizations that provide respite care to moms, but nothing quite like what Manlius-based David Refuge offers. While the organization has grown immensely since its inception eight years ago, she wishes more people were familiar with its services — both to benefit from and support.
“We’re certainly in a position where we want to recruit people who want to invest in our mission, and grow awareness so people who really do need us have a spot,” she said, noting that David’s Refuge serves families in Central, Southern and Western New York.
David Refuge was founded by Warren and Brenda Pfohl in honor of their son David, who passed away from Batten Disease in 2009. They began hosting parents in their Manlius home, and the organization took off from there.
In addition to switching the respite location to bed and breakfasts (there are now 24 “partner” locations across Central, Southern, and Western New York), the organization has grown its number of families served every year. From 2018 to 2019, for example, the number of overnight respite weekends is increasing from 250 to 350.
The hope is to grow this number to 500 in the next three years, and 1,000 within five years. In addition, the organization plans to add programming outside of respite weekends — which could boost the annual number of people served to over 5,000.
“We often times feel like we are just scratching the surface, as there are literally thousands of families right here that need support,” Houck said.
Potential activities could include a picnic for families impacted by special needs or life-threatening illnesses, a mom makeover event, a dads’ barbecue and a Valentine’s Day night.
“There are more ways in which families can take a break,” she said. “We want to become a community that is nationally recognized for empowering caregivers to lead their families with strength and grace.”
The weekend retreats, as well as upcoming programs, are not just about giving parents a break one time, but empowering them to continue to take time for themselves when possible. Another goal is helping families feel less alone.
“In our society, we don’t always know how to come alongside a family that is going through a challenge.” Houck said.
The programs also respond to challenges around finances. Money can be tight for families with a sick or disabled child, particularly as one parent frequently leaves the workforce and medical bills can be high. Beyond paying for a bed and breakfast getaway, David’s Refuge can reimburse parents up to a certain amount for childcare while they are away (through support from the Jim and Juli Boeheim Foundation).
Members of the community can help support David’s Refuge through monetary donations, in-kind donations (e.g., services, gift cards), event sponsorships, and time. A $600 donation would cover the cost of one respite weekend (whether for one couple or a single parent); all of this money goes back to the local community.
People can buy tickets and attend the organization’s two large social events as well as sponsor them. And businesses can organize service projects to benefit David’s Refuge, whether it is making gift baskets for couples, writing handwritten notes for National Caregiver Month, or another heartwarming effort.
“There are some really beautiful ways people can come alongside us,” Houck said.
Saying goodbye to a beloved pet is one of the most difficult things any pet owner will experience. Few people know that better than Dr. Annette Otis. Dr. Otis opened Stillwaters Veterinary Care in 2017 after she saw a need for end-of-life veterinary services in the Syracuse area.
Dr. Otis’ goal is to help owners keep their pets at home and give them the tools and resources to take care of their pet in those final days. She fills the gap in the time between a pet’s diagnosis and the end of their life, providing what she calls “small comforts” for the animals and their owners.
“It’s a tender time,” said Dr. Otis, “and I want to make the process as manageable as possible.”
After spending 13 years in emergency veterinary services, Dr. Otis was accustomed to performing euthanasia in a clinical setting, but she saw a need to provide those services in a pet’s home to help them go with peace and dignity. In the clinical setting euthanasia is “usually very stressful and a sudden decision.” She said she saw a better way to do it.
“As much as they try to make a clinic nice, it’s not home. Saying goodbye to a pet shouldn’t be an appointment,” Dr. Otis said, “I was a veterinarian with a job before, and now I feel like I’m a veterinarian with a mission.”
Water is an important symbol for Dr. Otis. She chose the name Stillwaters Veterinary Care in honor of the importance of water as part of the environment, the end of life being a time to slow down and reflect, as well as a symbol of the beautiful lakes that surround Central New York, including Skaneateles, where she is based. She also offers water-based pet cremation, which is more environmentally friendly, using 90 percent less energy than traditional cremation.
Although she mostly sees dogs and a few cats, Dr. Otis has also cared for an 850 lb. pig and a therapy turkey named Tofu from Purpose Farm in Baldwinsville. In total, Dr. Otis has cared for 445 pets.
“They all mean something to me,” said Dr. Otis.
Going to their homes gives Dr. Otis so much more information about the pet and a sense of their lives than she gets in the clinic.
Dr. Otis is currently undergoing certification for Animal Hospice and Palliative Care and will be among the third class in the country to be certified. This is a relatively new veterinary field and it’s growing fast, according to Dr. Otis. She will be the first veterinarian certified in Hospice and Palliative Care in Syracuse. She hopes that she will become well-known enough that pet owners will call on her when it is time to help their pet through the end of their life and reduce their anxiety in their last moments. When it comes to making the choice to say goodbye to a pet, Dr. Otis hopes to help the family make the decision that is best for them.
Of her chosen profession, Dr. Otis says, “It’s changed my life.” Compassion fatigue is a common affliction for doctors and she has to work to clear her mental and emotional space so she can be completely focused on her patient. She loves nature, so in her spare time she hikes, paddleboards, skis, reads, and meditates. She credits her emergency room training with her ability to compartmentalize and focus.
“As sad as [end of life care] is, it replenishes my spirit,” she said.
Dr. Otis’ demeanor is calm and steady, putting you instantly at ease. Even as a child, Dr. Otis knew she wanted to be a veterinarian, although it was during a stint with Americorps after college that she realized she preferred caring for pets to teaching eighth-graders.
Her latest endeavors are charitable. Dr. Otis created the Compassionate Crossings Fund to help families who can’t afford to bury or cremate their pets and she is in the very early stages of setting up a clinic to treat the pets of Syracuse’s homeless population. She is currently looking for a location that will provide basic healthcare, bedding, food and other needs for the animals.
“Homeless pets are their humans’ whole world,” said Dr. Otis.
Recently Dr. Otis started a pet loss support group, which meets every third Thursday in East Syracuse at the Veterinary Medical Center of CNY. The support group is free and open to the public. Owners grieving the loss of a pet are encouraged to bring pictures and to share stories with other group members.
Dr. Otis offers end of life counseling, hospice & palliative care, in-home euthanasia, aftercare and support, and water-based pet cremation. For more information about Dr. Otis and Stillwater Veterinary Services, please visit her website at www.stillwatersvetcare.comor on Facebook @stillwatersvetcare.
To those who ask the number of children Michelle Wilbur has, she tells them seven.
On Aug. 26, 2017 Michelle gave birth prematurely to one-pound fraternal twins.
The next day her son Jackson, the younger of the two by one minute, died in the newborn intensive care unit at Crouse Hospital, the result of burst lungs.
Tobie, the other twin, spent the ensuing five months in Crouse before being released for two weeks and then airlifted to Upstate University Hospital, where he stayed until this past December. Doctors performed three separate brain surgeries on Tobie. In addition to experiencing several strokes and impaired vision, he had developed hydrocephalus, a build-up of excess fluid in the brain’s ventricles.
“He was not supposed to survive,” Michelle said.
Along the way, in March of last year, Michelle’s mother fell into a coma and soon after lost her roughly 20-year battle with liver disease.
During that stretch, Michelle and her family split time between their current home in Fayetteville, their former home in Massena and the Ronald McDonald House Charities.
A 37-year-old single mother, Michelle also raises her daughter Gretchen, son West and adopted identical twins Natalie and Corinne. Her eldest daughter, Marissa, is currently away at college.
Michelle, who previously served on the board of directors for the Legal Aid Society of Northeastern New York, now looks after her children full-time.
“Right now, I’m just kind of taking it day by day,” Michelle said. “I like to have things well-set, and they’re not, and I’m having to live trusting each day is going to be okay, and the next day is going to be okay.”
As a form of healing, Michelle manages to set aside several hours a week for writing letters to Jackson and her mother, all of them labelled with the destination “Heaven.” She began this practice the September immediately following her son’s death.
“It was just natural for me to start writing,” Michelle said. “For me to be able to write to them makes me feel like they’re still here.”
She also puts a return address on the ones sent to her son, whom she affectionately calls “Jack.”
“It sounds weird, but I always thought, at least he’d know where to come back,” Michelle said.
Situating herself in the parlor of her Fayetteville residence, she writes about how much she misses her departed loved ones and inquires into their well-being. Sometimes she’ll share parts of her day. Other times she’ll question life.
Her letters, written in cursive, range in length from half a sheet of paper to multiple pages. Depending on the week, she’ll finish two or three letters to Jackson and at least one to her mother. Her middle children also write letters when they can.
Starting late last year, the post office started returning the Michelle family’s letters, each one deemed undeliverable for containing an improper mailing address.
Michelle, who belongs to East Side Moms of Syracuse on Facebook, posted on the group’s wall in early November explaining her situation.
She asked if anoyne knew Heaven’s address, never imagining she would really get an answer.
One woman suggested Michelle mail her letters to the Wailing Wall in Jerusalem. Another member sent her two international stamps.
The very next day, in the check-out line at a local T.J. Maxx, Mindy Epstein of the Fayetteville area overheard Michelle conversing with Natalie about their situation and the idea of mailing the letters to the Wailing Wall. Epstein mentioned she herself had lost a child and that her son Ryan was heading to Jerusalem for a 10-day Hebrew school field trip this month.
“Life is so weirdly intertwined,” Michelle said. “There’s not just happenstance.”
Upon speaking with Ryan, Mindy messaged Michelle that her son would personally deliver her entire collection of letters to the Wailing Wall, effectively saving her hundreds of dollars.
“It’s very emotional for me,” Michelle said. “That her son was willing to take my letters was amazing. I was completely flabbergasted.”
Michelle said the gesture restored her faith in humanity, calling it “selfless.”
“It’s one of those things that I just kinda marvel at that it happened,” David Hinshaw, Epstein’s husband, said.
Using the international stamps gifted to her, Michelle mailed one letter written to her son and one to her mother. She gathered together the hundred or so remaining letters, sealed them in envelopes and handed them over in March.
“It was very hard for me to let go of those letters,” Michelle said. “There’s something very personal about turning over your thoughts.”
Michelle said she doesn’t know anyone else embarking on a trip to Jerusalem anytime soon. Regardless, she said she will continue writing letters.
“I’ll have to buy stock in international stamps now,” she said.
Aside from the letters she writes, Michelle channels her energy through painting nature scenes. She has further coped with Jackson’s passing by setting out a basket for him on Easter and filling his stocking for Christmas.
“It’s really hard to explain the loss of a child,” Michelle said.
Her own mother lost a son, Brian, suddenly and without explanation when he was four months old. Michelle said the last conversation she had with her mother, which took place last fall in a Canton park, concerned the connection between Jackson and Brian.
“In some aspects she helped me to understand how to grieve Jackson but also how to live still with the children that I have,” Michelle said. “I know people have different views on what Heaven is, and for me, it’s very comforting just to think about my mom and son together.”
This story was originally published in The Eagle Bulletin.
Christopher Bily used to be a lacrosse coach. But the three successful restaurants he’s opened downtown since leaving that behind — Modern Malt, Original Grain and this month’s Syracuse Eats feature XO Taco — would suggest a career switch was the right move.
Though he originally planned to start a food truck, the idea didn’t pan out. The demand for food trucks were lower in Syracuse, making that plan harder than expected, according to Chris.
“Once that idea didn’t work out, Matt Gardner, one of my best friends and current business partner, and I ended up connecting with a bunch of guys and starting Modern Malt,” Chris said.
Tacos, from left: Hot Chix, Achiote Beef, Carnitas, Redfish, Shrimp
Modern Malt was Christopher’s first crack at the restaurant business. It was the first time he was able to write a menu, cocktail menu, design a space, pick out the décor, and have a big influence on the restaurant.
“Original grain came two years after, and then XO Taco in 2018 to 2019,” he said.
After selling his shares in Modern Malt a year after opening, Chris did some traveling to Los Angeles and New York City, looking at different concepts in these areas.
“We picked up that fast cash, quick service restaurants has become superhot and were trending, but we wanted to put a few different trendy foods together in one restaurant ,which led to Original Grain,” he said.
XO Taco came about once Chris’s real estate agent found the building that was for sale in an area that was quickly growing in Syracuse.
“We asked around to our friends what they wanted to see in a new restaurant, and many of them answered with ‘good Mexican food,’ which led to this restaurant taking off,” Chris said.
Pillow Talk Margarita
The name came from an early dish at Modern Malt.
“A dish on the first Modern Malt menu was called xo taco, and always stuck in my head, so when we decided on Mexican, I knew I could put together a cool branding with the name XO Taco,” he said.
The atmosphere of the restaurant comes off as a sexy, cool, and fun taco bar, with dimmed lights to attract all ages of people, from college students to workers. The walls have eye-catching décor, making it perfect for pictures and social media.
XO Taco holds many events such as bridal showers, corporate happy hours and weddings, and the restaurant has live bands on special occasions.
“We will put out a taco spread for the corporate happy hours and offer drink specials like buy one get one drinks, this allows for a fun atmosphere with employees,” Chris said.
The menu has all the Mexican food favorites such as tacos, guacamole, salsa, queso, churros, nachos and much more. They hold specials every day of the week, including everyone’s favorite Taco Tuesday.
“A few of the favorites here are Macho Fries, the Hot Lips Margarita, and Shrimp Tacos,” Christopher said.
XO Taco is open for lunch from 11:30 a.m. to 2:30 p.m. Monday through Friday and 11 a.m. to 3 p.m. Saturday and dinner 4 to 10 p.m. Monday through Thursday and 4 to 11 p.m. Friday and Saturday.
For two decades, the CanTeen in Cicero has been redefining family.
“Anybody who walks through that door, we’ll have a relationship with, because they’re family,” said CanTeen Executive Director Toni’Lyn Brauchle. “Our job is to facilitate in connecting the dots to see how they have more in common with the people that they’re spending time with than they’re different. Once we show them those connections, they’re family for life.”
Toni has been with the teen center since the beginning, and she’s devoted the bulk of her life to providing a home away from home for the kids of Cicero and North Syracuse—some 300 kids a week come to the CanTeen between the hours of 2 and 6 p.m. on weekdays to watch TV, eat snacks, do homework or just hang out, all under “Miss Toni’s” supervision. And while they’re there, they’re not getting into trouble—according to the Afterschool Alliance, afterschool programs like the CanTeen improve academic performance, reduce the risk of youth experimenting with alcohol and drugs as well as teen pregnancy, improve school attendance, and reduce the risk of kids being involved in violent crime. In addition, a study by Rose Institute at Claremont McKenna College found that every dollar invested in high-quality afterschool programs saves taxpayers about $3. That goes up to $8 to $12, if the benefits from crime reduction are included in the calculation.
None of this is news to Toni.
“Our foundation is to believe that a young person is a whole human being, not a problem to be solved,” she said. “All this other stuff will come because you’re building them up rather than focusing on what their problem is. That’s the foundation of what we do, even today.”
Building a home
A Long Island transplant, Toni graduated from North Syracuse High School in 1978. She married and raised two kids here—and all the while, her younger sibling was struggling with addiction. It had a profound impact on her. She wanted to do something to help families in a similar situation. So she joined with Christine Burke and Dr. David Morton from the North Syracuse Central School District to create the PRIDE Team.
“There were probably 40 or more kids who joined us in the idea that it was okay to not use,” Toni said. “We had this idea in our heads that we would make it cool and okay and acceptable not to use.”
At the time in the late 1990s, federal and state funding for drug prevention programs was plentiful, and the American Red Cross, then led by Elizabeth Dole, was encouraging communities to use the funds to provide opportunities for kids and teens during afterschool hours. With the help of Cicero Police Chief Joseph Snell, who also worked with the Red Cross, the PRIDE team applied for and received a grant to run an afterschool program. The Red Cross donated a vacant storefront at Penn Can Mall that was transformed into a teen center, then called The Youth Initiative.
But things went downhill in late 2001. The leadership at the American Red Cross changed. The drug prevention funding streams dried up. September 11 and the ensuing financial crisis happened. Penn Can Mall was demolished. And the CanTeen was left in the lurch.
“Everything changed,” Toni said.
The town of Cicero took over the administration of the CanTeen on Jan. 1, 2002, but funding has been an issue ever since. The teen center bounced around, moving five or six times, before finally securing a $250,000 grant with the help of Assemblyman Al Stirpe (D-Cicero) that helped them to purchase their current home at 6046 Route 31, next to Cicero-North Syracuse High School, in 2012. The center is now funded through the cooperation of the towns of Cicero, Clay and Salina and the village of North Syracuse, private donations, and a combination of fundraisers, the largest of which is the Gus Macker 3-on-3 Basketball Tournament, held each summer at the high school.
A community center
Toni said the center wouldn’t be where it is without the support of the community.
“As I’m reflecting back on the 20 years, I’m in awe of the community that we reside in and the fact that they have agreed on this one thing,” she said. “The four municipalities and the school districts have continued to agree on this one thing, and that is the lives and enriching the lives of the young people who reside here.”
She also credited the many people who have been there along the way, from former North Syracuse teachers Bill Brown and Bill Bradley, who helped launch The Youth Initiative; Joan Kesel, supervisor of the town of Cicero when the CanTeen was first established; former Onondaga County Undersheriff Warren Darby, a longtime supporter; former North Syracuse Central School District Superintendent of Schools Dr. Jerome Melvin; Sandra DiBianco, a former member of the NSCSD Board of Education; Amy Venditti, who recently joined the CanTeen as a second full-time employee; Joe Snell; David Morton; and members of the media who have supported the center’s mission over the years. But most of all, she wanted to give credit to Jody Rogers, Cicero’s director of parks, recreation and youth development.
“We would not be where we are at if it wasn’t for her persistence and her ability to do the networking and provide the supports for us to get the job done,” Toni said. “She held us and continues to hold us to a standard of a quality program that is second to none. We wouldn’t be open today if we weren’t held to that standard.”
A 20-year success story
With that support, the CanTeen has been able to keep its doors open for 20 years. They’re celebrating with a year-long fundraising drive—they hope to raise $20,000, which sounds like a lofty goal, until you consider the way they’re doing it: in true CanTeen style, Toni and her staff are asking for $20 donations from 1,000 people. When you consider the number of people who have been touched by the teen center, it doesn’t seem like an unattainable number.
The community marked the 20th anniversary last month, again, just the way you’d expect the CanTeen would — not with a gala or a ball, but a family-style party filled with CanTeen alumni. For Toni, it was immensely satisfying.
“I see the success stories of kids and where they’re at now in life,” she said. “We’ve lost a few along the way, and some still struggle, but a majority of them are doing well, and they’re just thriving and being everything that they hoped they could be.”
Some days are certainly better than others—working with teenagers is never a walk in the park—but all in all, Toni said it’s always worth it.
“Ninety-nine-point-nine percent of the kids who come here are amazing human beings that give me so much more than I could ever give back,” she said. “They have so much to offer. They don’t even see their own strengths. They don’t see what they’re capable of.”
She said the kids she sees just want to be accepted.
“I think every human being needs to feel like they’re worth something, and have a connection somewhere, and belong somewhere, that sense of belonging,” Toni said. “As much as we provide that for them, they provide that for us as well, a hundredfold.”
I have two kids myself — my daughter Emily is 4 and my son Andrew is 10. Emily is — you know when your parents tell you they hope you have a kid just like you someday? Emily has made me realize that is a curse, not a compliment. And Andrew and I recently had the “where babies come from” talk.
So that’s my life.
It’s not easy being a mom under the best of circumstances. Throw in jobs, sports, bills, special needs, what have you, and no wonder moms are so stressed. According to a survey reported on babygaga.com, 64 percent of moms feel that parenting has become more competitive these days, and 75 percent say they feel pressured to be the “perfect” mom. Eight out of 10 moms with kids under 6 say parenting is “exhausting.” (Anecdotal evidence would suggest the other two are either lying or have massive amounts of help.)
The fact is, the women’s liberation movement of the 1960s and ‘70s failed us in that it told us we could “do it all” — and now we’re expected to do it all. We’re expected to work full-time, take care of the kids, maintain a spotless house and look flawless while doing it. And if we have a spouse or partner who does his or her share, we’re considered “lucky.” What kind of nonsense is that?
I do have one of those spouses. He’s a great dad. He does at least 50 percent of the housework — probably more, because I work a lot, and I also have chronic migraines. But at the same time, I’m the one who keeps track of everyone’s activities. I make the doctor’s appointments. I make lunches. I organize the birthday parties and get all the presents. If someone needs a particular uniform or shirt clean or form filled out, I’m the one who takes care of it. I do all the things he doesn’t think about doing.
It’s called emotional labor, and I’m sure you know all about it. It’s the idea that we’re stuck with all of the jobs no one else thinks of, the things everyone else sees, but doesn’t do, the things that somehow magically get done — the laundry gets put away, the kids get to the dentist, the toothpaste gets scrubbed out of the bathroom sink. You could wait until someone else notices is and takes care of it, but then it wouldn’t get done. You could ask someone else to take care of it, but that’s the whole point — everyone else sees it, so why can’t they take care of it without being asked? Why do I have to micromanage everything? Why can’t someone else take the initiative?
But how do we address the inequality without sounding like we’re nagging? How do we come to understand that we deserve to share the load equally, perceptions of nagging be damned?
Late last year, Erin Engle’s youngest son passed a bittersweet milestone. Erin’s middle son, Griffin, was 7 when he passed away on Sept. 12, 2014, from a rare form of brain cancer.
“Everett, in the middle of December, has been on this earth longer than Griff,” she said. “Griff was 7 and almost one month [when he passed away.] Now Ev has surpassed that. So that, to me, that was hard.”
There’s very little about losing Griffin that hasn’t been hard. He was an eternal optimist who loved to dance around, an athlete whose favorite sports were soccer and hockey, a joker whose laugh could make the whole room laugh right along. He was the bridge between his by-the-book older sister Grace and rebellious younger brother Everett, smoothing over the friction between their divergent personalities and providing a playmate for both, especially Grace, who was two years his senior and his best friend. His favorite thing to say was, “It’s a great day to be alive!”
Since his death, the entire Engle family has dedicated itself to raising awareness about pediatric cancer through Griffin’s Guardians, a nonprofit started in December of 2014, with Erin and her husband, Adam, at the helm. The organization raises money for research through a partnership with St. Baldrick’s, the world’s largest pediatric cancer research foundation, and provide help to families facing a childhood cancer diagnosis.
“We helped just under 100 kids last year in Central New York, and our reach is 17 counties,” Erin said. “The numbers of kids that are getting cancer in our area are growing each year. Some kids are in treatment for two, three, four years, so we continue to help their families as long as they’re in treatment.”
Griffin was first diagnosed with Stage 4 glioblastoma multiform, a brain tumor rare in children, in August of 2013. He underwent surgery to remove a large tumor in the center of his brain, which robbed him of much of the strength and range of motion on his right side; he could no longer play soccer or hockey, and he had to undergo extensive physical therapy.
Knowing that Griffin’s type of cancer is likely to return, the Engles appealed to the FDA for help, winning a Compassionate Use waiver for a vaccine showing good results in clinical trials in adults. The Engles sent samples of Griffin’s tumor in hopes that it could be used to create a vaccine. While they were waiting, Griffin’s tumor came back in July of 2014. In another devastating blow, they learned there wasn’t enough left of the old tumor to make a vaccine. With no other options, Griffin came home on hospice care on Aug. 1, 2014. He passed away Sept. 12.
While Erin and Adam knew they couldn’t prevent other families from going through the same experience they had, they wanted to do what they could to make the process easier. So that December, they started Griffin’s Guardians. The nonprofit would provide monetary support to families whose children were undergoing treatment at Upstate Golisano Children’s Hospital. Right now, families get up to $1,000 a year. The organization also provides five additional $1,000 scholarships to families who need more money to get by. The funds cover the family’s expenses while the child is in treatment.
The assistance provided by Griffin’s Guardians isn’t just monetary.
“In the hospital, we do [a program called] Lighten Your Load,” Erin said. “We found out that [families] had to pay for their laundry services in the hospital. So we provide little baggies that have your dryer sheet, your eight quarters to do one wash and dry, and then your laundry pod. So, at the nurses’ station, if you have to do laundry, you can just go to the nurses’ station and they give you the baggie and then you can go do laundry.”
Erin said the program offers more than just clean clothes.
“I did laundry almost every day when we were in the PICU,” she said. “It almost gives you a sense of normalcy.”
Griffin’s Guardians also does book drives at local schools, where all books collected go to the kids at Golisano, and the nonprofit’s Project Pillowcase collects newly-sewn, child-themed pillowcases from area volunteers for the hospital, as well. Erin said they’re also putting together a drive for toiletries to keep at the nurses’ station.
The charity has two major fundraisers every year: Griffin’s Penalty Kick Tournament, which is coming up on May 17 at Clay Park Central (registration is still open — visit griffinsguardians.org/2019-soccer-shoot-out.html for more information), and the Gold Tie Gala, held every year in September to mark Childhood Cancer Awareness Month. Tickets for the gala, which is held at the Marriott Downtown Syracuse every year, go on sale in July and typically sell out within a couple of hours.
Erin said Griffin’s Guardians has added another event the board hopes will become an annual tradition: Cheers to Charity, held in February at Maxwell’s in Syracuse.
“That was just a fun, casual get-together, kind of fighting the winter blues,” she said. “We’re actually thinking about renting out the entire space next year because we think we could do it.”
A family affair
Even Grace and Everett have a role to play with Griffin’s Guardians. Shortly after the organization launched, Grace and Erin were talking about the first family they were going to help when Grace asked if the child fighting cancer had any brothers or sisters. Erin said she kind of shrugged her off until Grace said, “Because they’re going through a hard time, too.”
Thus Grace’s Sibling Sunshine was born. The program, named after the song “You Are My Sunshine,” which Grace and Griffin used to sing to each other, provides support to siblings of kids fighting cancer. They get care packages as an acknowledgement of their struggle, and last year Grace, now 14, launched an event at Build-A-Bear. Each kid gets a $40 gift card to pick out a bear, an outfit and whatever else they want.
“It’s the most adorable event ever,” Erin said. “It’s so cute because they’re all so excited, and they get to be together and go do something outside of the hospital.”
And this year, Everett will be launching his own program.
“With Everett, a lot of the things he remembers from Griffin are stories we’ve told through pictures,” Erin said. “He’ll always say, ‘Oh, Griff loved to play hockey with me’ because there’s a picture of Griffin and him with the hockey sticks in the living room. So we wanted to incorporate something with pictures.”
For Everett’s program, called EVERettLASTING Memories, a professional photographer will take pictures of the families to provide them with a keepsake. Erin said the family hopes to launch the program this month.
She said it’s important for her that the entire family be a part of Griffin’s Guardians.
“When we first started, I knew I needed to do something as a mom. I knew that my husband needed to do something as a dad,” she said. “And Grace was 9. She was at that age where she could take two paths —she could do something good, or she could hate the world and just have that attitude of, ‘Why me? Why’d this have to happen to us?’ I needed to show her that something good can happen. It became my mission that we needed to do this together.”
A community organization
This December will mark five years since Erin launched Griffin’s Guardians, and she’s continually amazed to see the support the organization gets.
“Four years and four months into this, and I’m still blown away that people still pick us,” she said. “I just thought that the giving and the support would die down, and I’ve expected it every year and it hasn’t happened. There are so many great organizations out there, but that people pick us to give to — there’s not words to describe it.”
Between its annual fundraisers and participation in the annual St. Baldrick’s event at Kitty Hoynes every year — the largest head-shaving fundraiser in the country for pediatric cancer — Griffin’s Guardians has raised close to $250,000 for pediatric cancer research. Their donation, in part, funds a dedicated researcher at the University of Michigan, Dr. Rita Chernock. In addition, Griffin’s Guardians is on their “Road to a Million” campaign—they expect to hit $1 million raised this year.
“We’re regular people who, in four years and four months, have almost raised a million dollars,” she said. “So many people say, ‘Look what you’ve done,’ but it’s really not just us. It’s who we’ve been surrounded with, the loyalty of people to this organization, the loyalty to truly believing that they can change pediatric cancer is incredible. Beyond incredible.”
Life after Griffin
As Griffin’s Guardians continues to grow, the Engles are still figuring out how to live life after Griffin. Nearly five years after his death, they’re still adjusting to the new family dynamic.
“I think that that’s the difficult part when families lose a child,” Erin said. It’s made that much harder, she said, when she looks back at how picture-perfect things were before August of 2013: “Right before Griff got diagnosed, Adam had said to me, ‘We’re on the top of our game right now.’”
At the time, Grace was 8, Griffin was not quite 6, and Everett was just a baby. Griffin and Grace were constant companions, but the three siblings often played together. Without Griffin, Grace and Everett, who are seven years apart, have had a harder time adjusting to each other.
“Grace adored Everett as a baby and mothered him and did all that,” Erin said. “Well, that’s not fun anymore. He doesn’t want another mother. We still work on that daily because they’re in two different places… I think definitely Griff was that bridge. That’s one of the hardest parts, I think, just figuring that out even four, five years later.”
Erin said she and Adam still struggle with PTSD after Griffin’s death.
“When you hear people going through it, it brings you back to that,” she said. “We never really realized that until probably two years ago that Adam and I have PTSD.”
But she holds onto something that she tells her kids every day.
“The line that I always say to my kids is shine bright. So when they leave for the day, ‘Shine bright today. Do something to shine bright,’” Erin said. “To know that we’re just shining bright in someone’s life, even if it’s just for that day, it helps me heal.”
That doesn’t mean she doesn’t have moments when it all closes in on her.
“My thing is, well, why did it have to happen to us? Why?” she said. “If you don’t push that down, it will eat you alive. It’s like a daily struggle.”
Erin said she’s had to learn to frame it differently.
“You just have to think about, why not me? Because I got to be Griff’s mom,” she said. “We got to be his family. Why not us?”
I’m a former elementary school teacher. I became a stay-at-home-mom to my three children, Natalie, 15, Bradley, 12 and Genevieve, 5. My husband, Aaron Hugo, is a partner at Pinckney-Hugo Group. PHG was instrumental in getting us started — a closet at the office was actually the first location of CNY Diaper Bank, and they also helped us with everything from our logo and website to PR and graphic design. We wouldn’t be where we are now without their help.
What is a diaper bank?
Diaper banks are nonprofit organizations that focus on addressing diaper need by collecting, storing and distributing free diapers to struggling families. Diaper banks and diaper pantries obtain diapers through local diaper drives, in-kind donations, and by purchasing diapers directly with donated funds.
Why do we need a diaper bank in CNY?
Diaper need is an often-overlooked consequence of poverty. Nearly 50 percent of children in the city of Syracuse under the age of 5 live at or below the poverty line. Diapers are not covered by SNAP or WIC benefits and an adequate supply can cost $70 to $80 a month. The poorest families spend more per diaper because they cannot afford to buy larger boxes. When families run out, babies suffer, parents’ stress levels increase and there are far-reaching negative consequences.
How did this one get started?
Starting a diaper bank was something I had thought about doing for a long time. I was painfully aware of diaper need and I had researched and found there was no place for parents to go to in Syracuse when they needed diapers. In early 2016, I emailed a survey to all of the local human service agencies and 100 percent of the agencies who responded said they rarely had diapers to give to families in need. They were often turning them away or giving a few diapers in a random size. After that, there was no turning back. I recruited a few like-minded friends to form a board of directors and we got started in May 2016 with the first “Make a Mother’s Day” Diaper Drive. We collected about 23,000 diapers to get us going and in June we delivered 6,000 diapers to our first six partner agencies.
You only accept disposable diapers. Why? Can you describe the resources available to families who want to use cloth diapers?
This is actually going to be changing very soon! We are starting a new partnership with Jillian’s Drawers, a baby boutique in Ithaca, to provide cloth diapers for those families who want to give it a go. Jillian’s has a large supply of donated, used cloth diapers in good condition leftover from a cloth diaper loan program they used to operate. They are going to pass along those diapers to us and continue to serve as a donation site for cloth. We will be getting the word out to families through our partner agencies and will hold sessions 1 or 2 days a month where families can come into learn how to use them and receive a supply.
It’s important to know that cloth is not for everyone. Many of the families we serve are in transition and lack access to laundry. For those who don’t have washers and dryers in their home or apartment, getting to the Laundromat every other day to wash diapers can be unrealistic. And there are many daycare providers who won’t use cloth. All that said, we want to offer this option for those who want to try it — even if only used part-time — they can save money.
Tell me about your Make a Mother’s Day Diaper Drive.
This is how it all began for CNYDB, and we always felt that Mother’s Day was a really good time to build awareness of a problem that 1 in 3 moms are forced face — diaper need. Diaper need disproportionately affects moms and negatively impacts their mental health and well-being. In fact, mothers who experience diaper need are more likely to experience postpartum depression. The drive serves to not only educate the community about all of this but also to show people that something as simple as donating a pack of diapers can make a really positive impact for moms and for babies. We’ve set our goal high this year — 250,000 diapers! We actually encourage people to donate funds instead of diapers. We buy in bulk and we can purchase a lot more diapers in the sizes we need when people give dollars. All funds raised during the drive will be translated to how many diapers we’ll be able to purchase. As little as $5 can provide a supplement of 50 diapers to a family.
Aside from the obvious, what is your mission?
To ensure that all CNY babies have access to the basics they need to thrive and reach their full potential.
How can people support the diaper bank?
Donating dollars is key to sustaining and growing this program. We have no staff — we are 100 percent volunteer-run so every dollar is used for distributing diapers. Because of our large distribution, we have been able to receive large truckload donations of Huggies diapers from Kimberly-Clark through our membership with National Diaper Bank Network. But we still have to pay the cost of freight on these donations, which is typically between $5,000 to $7,500 per shipment. We also always need to bulk order sizes 5 and 6 diapers from our supplier, regardless of how many we get donated. Those sizes are in high demand and we go through around 15,000 a month. The only way to keep growing is with funds to support these ongoing expenses. We have had a number of businesses donate money collected for office “Jeans Days.” Many groups who do diaper drives will also collect dollars, and that is hugely helpful. We are always encouraging people to organize diaper/fund drives at work, church, school and neighborhoods.
How else can we support mothers/parents in need?
We are a country of plenty, and yet far too many parents are struggling to provide basic needs for their babies and children. We cannot build a better future for our community if our youngest and most vulnerable are not able to reach their full potential. Systemic changes are necessary — we need to make it easier for parents to raise healthy, happy children. Quality childcare, decent paying jobs with time off to care for young children. No family should have to struggle to provide basic needs. In the meantime, providing a supplement of diapers can and does help families to provide comfort for their babies, gives them peace of mind and can help them toward becoming self-sustaining.
What agencies do you work with?
We distribute 70,000 diapers/month to our partner agencies. Many agencies are still on our waitlist. As financial support increases for the diaper bank, we will continue to add more partners.