WEEK 1 RECAP

While driving to St. Vincent de Paul, I saw a billboard announcing that the first game for the Cardinals was going to start in an hour.  My mind began to wander about Opening Day while I was beginning my first season away from the NFL.

Those thoughts vanished as soon as I turned left on Jackson Street.  In the distance, I saw about 50 people assembled even though the doors wouldn’t open for 90 minutes.  It was obvious that games were the last thing on their minds and, for the next four hours, they didn’t cross mine.

I signed-in and immediately helped stock supplies on the tables.  There were about 20 IMG_1851volunteers from two local churches and one Knights of Columbus chapter.  I chatted with several people who said they try to serve here monthly.  Commitment like that is crucial to meet the ongoing needs of serving 13 meals a week.  St. Vincent de Paul is a popular recipient for volunteer inquiries during the holiday season but they often turn people away after the shifts are covered.  The help is much more coveted January-October.IMG_1850

Leading the charge was the energetic dining room supervisor, Mrs. Jones (like that 70s song she’s quick to say).  She’s a deft multi-tasker, answering questions from every direction while instructing the crew about their various tasks.  She always referred to the pending guests as “clients.”  For some reason, that struck me as a sign of compassion and respect.

Moments before the 11 a.m. opening, she gathered everyone in a circle to hold hands and recite the Lord’s Prayer.  She also said, “Everyone is welcome, we don’t judge here.”  It was a special day because clients could enjoy a free wash and haircut.

The dining room is just one of five they operate throughout the Valley.  There’s an on-siteIMG_1852 garden to promote healthy eating and reduce food costs.  Every night the room serves as a shelter with a capacity for 180 men, 55 women and 28 spots for those in wheelchairs or dealing with another physical disability.  The line usually starts to form at 7:30 p.m. for the chance to sleep on a cushioned mat on the concrete floor.  The daily wake-up call is 5:00 a.m. and clients must depart within 30 minutes so prep can begin for breakfast on weekdays and lunch on weekends.

I offered to serve as the greeter.  I wanted to gauge the clients’ first impressions at the entrance.  My duties were to welcome everyone, recite the menu (Chili Mac, lentil soup with chicken and pastries) and offer to store their belongings into a cubby while they ate.  A few eagerly unloaded their weighty items while others were reluctant to momentarily lose touch with all their possessions.  Most had backpacks but some just had plastic bags and others had full suitcases on rollers.

Demographically I noticed a balanced split among genders and races.  Ages ranged from 20s-70s.  Several brought their dogs and a few wore veteran’s hats and shirts.  One commonality is they all seemed grateful and a few made a point to thank me for my time and service.

Almost an hour into the shift, Mrs. Jones checked in on me.  While we chatted, I noticed she made a concerted effort to welcome many clients by name and I asked her how she could remember so many names.

“Well, that’s because many of these people were my friends when I was homeless for two years,” she answered.  “My husband and I had good jobs then we got foolish with drugs and our lives went downhill from there.”

If I was searching for an example of how St. Vincent de Paul saved lives, I didn’t have to look far.  She lost her home, children and everything she owned.  These daily meals helped her survive.

One day, she wanted to pay back the organization in the only way she could afford.  She offered to volunteer for one shift to feel what it was like on the other side of the counter.  She was immediately hooked and her initial stint blossomed into one day a week then increased to 30 hours a week.

When the position of dining room supervisor opened, she applied and held her breath.  The executive who met with her said, “your interview skills suck but I’ve seen your incredible work ethic so you have the job.”  That put her life on an upward trajectory 16 months ago.

We served a total of 508 lunches.  As clients would leave, I said the same thing every time…”take care of yourself out there,”  They nodded or waved then resumed their daily routine.

My experience was simultaneously heartbreaking and inspiring.  I think people of all ages (but especially teens) would find it fulfilling to put their phones down for a couple hours and interact with people who appreciate a rare smile and friendly encounter.

Please visit http://www.stvincentdepaul.net to donate, volunteer or learn more about upcoming events.

NEXT SUNDAY:  Rockstar Canine Rescue and Sanctuary

 

Back Story

January 12, 2017

We were supposed to grow old together.  That’s always been the arrangement.  Every winter they break my heart then I forgive them in time to continue the tradition for another year.  It’s been that way since 1971 when I attended my first San Diego Chargers game.

Little Boy Gary Cropped

I thought it would last forever!

 

My six-year-old eyes couldn’t believe the enormous concrete, corkscrew walkways.  My untrained nose couldn’t identify the aroma from our GA seats but I’m pretty sure the source was only legalized a couple weeks ago.  Eventually I learned to brace my little ears for the cannon blast after scores.  I was immediately hooked and neither of us strayed…until now.  Apparently they were never that into me.

The highlight of our volatile relationship will always be the Sunday evening in January, 1995 during the impromptu stadium party after the team won the AFC Championship.Fans Rush the Field

Traffic was stopped for so long on Interstate 15 that drivers had plenty of time to get out of their cars to hug and high-five strangers.  Inside the stadium, people sat on aisle steps because every seat was filled.  I remember thinking, “there are 70,000 people here and I don’t see one usher or police officer.  None were necessary.

Two weeks later, I traveled to Miami for the franchise’s only attempt at glory.  The outcome was decided moments after kickoff but I naively figured future opportunities would arise.  I attended more than 100 games and watched probably 500 more on television.  I went to a meaningless season finale by myself because I couldn’t find anyone to take my extra ticket for free.  It was the worst tailgate party every but I still recall that Gary Anderson ran for 217 yards and we beat the Chiefs.

I don’t begrudge you Mr. Spanos.  You sign the checks so you can decide where they get cashed.  Your governmental counterparts did us no favors this past decade either.

But your announcement this week extinguishes any hope that my 95-year-old grandfather, 77-year-old father and I will get to experience a generational Cubs moment. You’ve hit a defenseless fan base with the crown of your helmet and that’s an Unsportsmanlike Conduct penalty I must decline.  My visions of an elusive championship parade always took place along the waterfront or through the Gaslamp District, never by South Coast Plaza or Inglewood.

I know many Raiders and Rams fans continued to support their teams after they relocated.  This feels different.  My sports writing idol, Jim Murray, once wrote “Rooting for the Yankees is like rooting for Brad Pitt to get the girl.”  I feel the same way about Los Angeles.  They have advantages and resources that tilt the playing field in their favor.

Any true San Diegan has an inherent rivalry and inferiority complex with the northern neighbors.  They had Vin Scully, we had Ron Burgundy.  They have Hollywood, we got Roseanne Barr’s National Anthem.  We’re the lovable losers who constantly defend their loyalty while others bask in championships.

So I’ve decided to impose a one-year, cold-turkey detox program beginning this weekend.  A part of me should thank you Mr. Spanos.  I’m leaving a league that suffers from atrocious officiating and seems to care more about curtailing touchdown celebrations than player suicides or abuses.

I’m resigning from my four fantasy football leagues/prediction pools.  DirecTV will be receiving my Sunday Ticket cancellation notice soon.  Goodwill (not Goodell) can expect a bulging bag of three Chargers shirts, two hats, two throwback jerseys, one pair of sweats, one hoodie, one pair of sunglasses, a travel mug, a dog collar and a myriad of memorabilia.

Friends say I should adopt a new team to support but I don’t trust myself in the dating pool again.  In my current vulnerable mindset, I’m liable to rebound with the Bills, Browns or Lions during a lively but regrettable booze-fueled weekend.  Their misery will have to continue without my company.  Instead, I’ll fill my calendar with tee times and movie theater reservations to coincide with kickoffs.

I’ll get over this eventually but nobody yet knows the long-term effects of your decision.

Cassie with Charger Player in hospital

My daughter Cassie with David Binn at SD Children’s Hospital.

I feel bad for the hospitalized children who won’t get any special visitors anymore.

 

Hopefully an organization will fill your void to deliver Thanksgiving turkeys to local underprivileged families.  Perhaps citizens will continue to donate during the Blood Drive even though the appeal of meeting players will be missing.

 

Finally, Mr. Spanos, let me be the first to congratulate you on your imminent Super Bowl victory.  That’s what usually happens when athletes leave San Diego.  If you’ll excuse me, I need to get back to gathering a foursome for Sunday, September 10th.

Season Review

Thank you all for attending my Post Season Press Conference.  It was a tremendous season with many highs and no lows.

I want to begin by thanking my wife, JoAnn.  Not one of those obligatory, award-show mentions but a sincere acknowledgement that this entire endeavor wouldn’t have happened without her.  My blog posts would be sequestered on Microsoft Word without her technology expertise and I may have talked myself out of it without her emotional support.

As I drove to every charity, I always thought, “I hope I can gather enough information to fill a blog.”  I’d then drive home wondering, “How will I be able to fit everything into a blog?”  The subject matter and interesting people allowed the stories to pretty much write themselves.  I’ve since caught myself calling them “my charities” the way I used to refer to the Chargers as “we.”

I’ve read articles that validate some predictions I made in the Back Story and Pre-Season blog entries.  Attendance at the Chargers home games were an embarrassment to the team and league because the mini-stadium was never sold out and fans of the visiting teams were the majority.  I still can’t envision the franchise’s hypothesis that, in three years, fans will pay three times as much to fill a stadium that’s three times larger and 30 miles farther than its fan base in a city that doesn’t want them.

As an armchair consultant, I suggest they volunteer to be the first team based in London and bask in the support of the entire United Kingdom.  Separately, the league continues to be plagued by protests, poor officiating and life-altering injuries to their players.

GT and ST Birth Wearing Chargers T

Because everyone wears a Chargers shirt to the birth of their 1st child

 

I’ll take some questions now:

Q.  What was my favorite charity?

A.  This was by far the most common query, especially as the season progressed.  My answer was honest and always the same, “Each was a great experience, I honestly can’t choose just one.”  People would then reply with, “Kinda like choosing your favorite kid, huh?”

I never understood that response.  There’s been plenty of times I had favorite kids.  For instance, I’d ask all three of them to clean their rooms.  If one of them did it without having to be asked twice — BOOM — they were my temporary favorite!  When pressed for an answer, I’d say Week 7 was special because JoAnn, Cassie and Sydney escorted me to Boys Hope/Girls Hope.  A good time was had by all.

GT and CT newborn wearing Chargers T

                                              2nd Child, different Chargers shirt

 

Q.  How did I select the charities?

A.  This required a lot of research.  I found great sites that people can use to find groups that are of interest such as http://www.handsongreaterphoenix.org and http://www.volunteermatch.org.  I wanted to visit a cross-section of organizations that had various missions and helped people of all ages.  I selected 16 groups but there were numerous others I wanted to work with but they either didn’t have opportunities on Sundays or required training sessions that didn’t work into my schedule.  I regret not helping veterans based and teen suicide prevention groups.

It was also important to me to select grass-roots organizations that were founded locally (St. Vincent de Paul was the only exception).  I’ve heard too many stories of charities that do great work but a large percentage of their donations go to executive salaries, lobbyists or elsewhere.  I donated $100 to every charity and left feeling confident my funds (and those given by readers) would be used quickly and effectively to help the beneficiaries.  Each of the charities is genuinely grateful for every donation, regardless of the amount.

I met incredible people with inspiring stories every Sunday and most of them shared one commonality:  They didn’t pick their causes as much as the causes chose them.  Each of the leaders who now dedicate countless hours to support law enforcement, disease-stricken children and adults, expectant mothers, abused dogs, sober driving campaigns and shoe collections were living quite different lives before something happened to them or someone they love.  Rather than feeling victimized, they recognized a need and stepped up to fill a void.

 

Q.  What was the most viewed story?

A.  The Season Finale featuring Hushabye Nursery registered nearly three times more clicks — including one each from Canada and Japan — than any other story.  It may be partially attributable to having an audience that grew during the season but helpless babies suffering opioid withdrawals is a relatively new crisis and pulls at everyone’s heart strings.

 

Q.  Did I miss watching football?

A.  I’d like to say otherwise but I did miss it, albeit less than I expected.  The toughest time was Thanksgiving Day.  The three games have become as much of a tradition to me as the food coma.  Furthermore, the fact that the Chargers played the Cowboys in the middle game tempted me to fall off the wagon but I didn’t.

 

Q.  Did I accomplish my goal?

A.  I actually had two goals.  First, obviously, was to find a productive, time-consuming distraction.  That was a resounding success.  Secondly, I wanted to raise a lot of money for the participating charities.  I haven’t heard a lot of feedback on that front so I’ll settle for knowing that I did a small part to raise awareness of these groups.  I hope readers learned about a cause or two they’ll support with money and time for many years.

There was also one result I didn’t expect.  The season squeezed some cynicism out of me.  I was feeling that our society is too preoccupied with social media personas and influencers.  It seemed everyone was more interested in saying, “I told you so” instead of asking, “How can I help?”  The people I met this season who “walk the walk” on Sundays and every other day improved my outlook dramatically.

 

Q.  What will I do now?

A.  I feel the hardest part of my Chargers detox is now complete.  I intend to support “my charities” throughout the year, not just during football season.

I’ll probably resume watching games next season but at a lesser extent than in the past.  I don’t plan to renew my satellite package to see every Chargers game and I won’t return to either fantasy league.  It turns out there’s a lot of fun to be had on Sundays that doesn’t involve couches or nachos.  I’ve also rediscovered my love of writing.  Now that I have a blog for eternity (or until I forget to renew the dues), I may return to share humorous anecdotes or tributes to musical heroes who are passing away at a discouraging rate.

This concludes the press conference.  Thanks to all who supported me and the charities during “My Season of Sundays.”

 

Gary

 

Cassie with Charger Player in hospital

My daughter with David Binn at SD Children’s Hospital

Gary and Shelby at 20 months3ECCA1EF-963F-4D83-9EBF-DF39F1900C67

WEEK 17 RECAP/SEASON FINALE

 

The shrieks are relentless with a piercing pitch that frays the nerves of everyone within earshot.  The violent body tremors cause excessive sweating and can turn every limb stiff.  The dose of methadone hasn’t taken hold so fits of uncontrollable vomiting, sneezing and diarrhea come next.  Eventually a respite for sleep arrives until the silence is shattered by the slightest sound — a door opening, a cell phone ringing or, ironically, another baby crying.  Then all those involuntary actions resume and the second day in the life of a baby withdrawing from opioids begins.

 

 

4FDF20E5-FC4D-4636-990B-D4D3BB5A8305

Newborns are the most vulnerable victims in the opioid crisis that’s gripping our country.  Technically, they aren’t born addicted — addiction implies they had a choice in the matter.  The proper term is “passively dependent” and the clinical diagnosis is Neo-Natal Abstinence Syndrome (NAS).  The root issue is these babies enter the world over-stimulated which requires unique attention to counteract the type of drug(s) in their system.

Tara Sundem, RN and Kelly Woody, RN are long-time certified Neo-Natal practitioners and are now on the front line of the epidemic.  Tara recalls handling maybe one NAS birth in 65 a decade ago but her current estimate is one in four.  They recognized the disconnect of using traditional tactics to battle an unprecedented emergency.  The fallout of opioids like heroin and pain killers including OxyContin, Percocet and Vicodin calls for an entirely new strategy.

The duo watched a television report about “Lily’s Place” in West Virginia, the only dedicated NAS clinic in the country.  They liked the template but saw opportunities to offer more comprehensive services.  In March 2016, they began dedicating their free time to this mission and gradually have scaled back their work schedules to launch Hushabye Nursery.

Few hospitals contain nurseries suitable for these traumas so Tara and Kelly are tutoring 102E34C0-F5CE-4C7C-AB8B-C15E845B0584nurses throughout the Valley how to bring comfort in any environment.  Almost every technique is counterintuitive to typical methods:  The room must be as dark and quiet as possible.  Don’t look at the baby during feedings because your face will trigger stimulation and they won’t be calm enough to focus.  Don’t cradle or hold them over your shoulder.  Instead, swaddle them tightly with their knees tucked into their belly to ease their stomach pain then place their hands on their chin so they feel contact.  Rather than rocking them, take deep breaths and squat with the baby facing outward, preferably in a corner of the room to minimize distractions.  Throughout the process, whisper “Shhhh” rhythmically in their ear to mimic mother’s heartbeat.

Tara and Kelly have made great progress building awareness but they’re eager to solidify the one missing piece… a venue.  Three locations are currently under consideration but no agreements have been reached.  I believe in the cause so much that I volunteered to help in any way they chose.  The Board of Directors has urged them to streamline 5836595B-E820-4FA9-8BA7-D29863EA5B6Eoutreach communications so I visited Tara’s home office on Sunday to enter the contact information of business partners, volunteers and donors onto an Excel spreadsheet.  It was clear this task had been neglected.  I plunged into the Hushabye email inbox and noticed contacts hadn’t been transferred since last April.  I worked several hours inputting a couple hundred entries but only progressed through April and May.

Without business backgrounds, they’ve learned a lot with trial and error.  Dealing with corporate and governmental red tape has been frustrating and forced them to step out of their comfort zones.  “At first I was intimidated to meet CEOs and other prominent people but now I leave each meeting having scheduled three or four future ones,” said Tara.

Two people leading a crusade against a national crisis is like fighting an inferno with a squirt gun.  But every time they got discouraged something would happen during a work shift that reminded them how they’ll be able to help one family at a time.  Since Arizona doesn’t mandate drug testing before maternity admissions like other states, some cases can fall through the cracks.  It’s possible — if a delivery is brief or the mother took drugs just before departing for the hospital — they could be discharged before either show signs of withdrawals.  Furthermore, many mothers are opting to give birth at home with mid-wives to avoid police detection.

The typical addicted mother may not fit the image of an abuser at rock bottom.  She’s as likely to be a functioning addict who couldn’t quit using pain pills after a surgery, got pregnant unexpectedly and was unable to get clean before the birth.  The Department of Child Services is contacted after every NAS birth.  A case manager visits the hospital within 48 hours to develop a game plan with all involved parties.  The mother often enters a rehab facility and the baby is released to other family members or foster parents.

Tara believes a good start to resolve the underlying issues would be to treat the mothers 323DFC83-4B44-444C-BB73-C420AA003CD4with the same compassion and value as the baby.  Many of them suffer from mental health issues like depression or bi-polar disorder and have the same addictive genes that spark dependency to cigarettes, alcohol or gambling.  “The mothers are quite aware of the situation they’ve created, ” she says. “Shaming or ignoring them doesn’t help.”

Ideally, expectant mothers will turn to Hushabye in advance to learn they won’t face the coming months alone.  After the birth, when mother and baby begin to withdraw, they’ll both be transported to Hushabye from participating hospitals.  The mother/child bonding is crucial even in these circumstances so they will share a room.  A NAS baby usually stays in the hospital for 2-3 weeks but withdrawal symptoms can be visible for the next 12 months.  A Hushabye case manager will be assigned to each mother to monitor their progress and guide them to existing local agency partners that can help with child care, employment training and more.

It’s taken years, but government and law enforcement have begun cracking down on culprits throughout the distribution channel.  Pharmaceutical companies have been fined for recklessly shipping inordinate sized orders.  Down the pipeline, four doctors in Mohave County were recently arrested for prescribing six million pills in one year to an area populated by 200,000 residents.  It’s not just a problem in the heartland or remote backwoods.  The outbreak is so widespread that overdoses have reduced the country’s life expectancy the last two years.

Arizona legislature returned to session this week and the topic is a priority.  Last year, Governor Ducey declared it as a public health emergency and organized a task force which helped unite Hushabye with influential community partners.  A recent report revealed there were nearly 8,000 overdoses in Arizona during a six-month period last year, including 716 deaths.  In a unique move, the Arizona Department of Health Sciences keeps a real-time tally of overdoses and deaths at WWW.AZDHS.GOV.

Some head-shaking stories have emerged during the struggle for the upper hand.  My father (a 78-year-old retired sheriff) was given his first drug test last year after back surgery.  The doctors were relieved to see the positive results that confirmed he took the painkillers instead of selling them.  That may sound extreme, but many senior citizens in Ohio have been distributing their pills to earn a couple hundred dollars a month at the going rate of one dollar per milligram.

One drug has actually saved lives though.   Narcan (Naloxone), if given nasally or by injection within minutes of drug use, can block the effects of an overdose and resuscitate the victim.  First responders now carry Narcan kits while more and more drug users are buying them as well to save themselves or friends if/when things go wrong.  The $40 kits are sold at pharmacies in 41 states without a prescription which is considerably cheaper than the $30,000 cost to taxpayers of overdose deaths.

It will take about six months for Hushabye Nursery to go from lease signing to ribbon cutting.  The floor plan will include 12 rooms with a crib, swing and bed for the mother.  This projects to about 100-125 cases a year but nearly 900 dependent babies were born in Arizona last year.  That’s why the other services are so important to assist mothers early and reduce recidivism.  It will employ about 40 medical staff and will rely on numerous volunteers.  It will be decorated with soothing colors and guests will receive one-on-one coverage around the clock.

It’s too early in the epidemic lifecycle to know if long-term effects like facial deformities, learning issues or stunted growth will arise similar to other drugs.  Changing people’s outlook through education and compassion reminds me of the AIDS crisis.  Everyone was initially so scared and uninformed that victims felt alone when they needed help the most.  Decades later, the number of cases has declined dramatically and scientific breakthroughs have given the world hope for a cure by 2020.

Hushabye Nursery is obviously in its embryonic stage.  If you ever wanted to get involved on the ground floor of a non-profit before there even is one, log onto WWW.HUSHABYENURSERY.ORG and follow their progress on Facebook.

There isn’t anything they couldn’t use.  It has received one grant and sporadic contributions thus far but  many expenses have been covered by Tara and Kelly.  Rest assured, any donation you make will go directly to things like postage and paper to essential materials for the building.

For more information, watch this recent interview:

 

 

NEXT WEEK — SEASON OF SUNDAYS IN REVIEW

WEEK 16 RECAP

During her career that began as a dishwasher then progressed to busser, server and cook before eventually owning four restaurants, Jennifer Caraway is accustomed to brightening a day with a great meal.  So, when a circle of friends began brainstorming how to support Joy Seitz-Butz after she was diagnosed with cancer, Jennifer knew she could bring a unique perspective to the table.

She offered to spend her scarce spare time — as a single mother with three jobs — by 35F7D3D3-16AC-4048-B5A0-7BCFE47A492Epreparing healthy meals and delivering them to Joy.  Proper nourishment is crucial after treatments because chemotherapy breaks down the body’s defenses, stunts appetite and alters taste buds.  Studies show that high-calorie, natural meals help combat muscle loss and fatigue.

During an interrupted night of sleep, Jennifer noticed the movie, “Mr. Holland’s Opus” was playing on television.  The timing was perfect…the film’s message of turning a temporary project into a life-changing mission provoked her to follow suit.  She increased meal production to feed a couple other cancer patients then in November 2011, launched The Joy Bus in her 1FDDFC19-AD8F-418D-9AB8-8D700CB157DFfriend’s honor.  Joy passed away three months later at age 40.

Joy Bus soon forged an invaluable partnership with Crooked Sky Farms (www.crookedskyfarms.com) near Buckeye.  Every Wednesday, Crooked Sky donates fresh food that’s in season (beets, radishes, cauliflower and broccoli are coming soon).  Jennifer then tailors the menu accordingly and spends Thursdays preparing the meals so volunteers can deliver them on Fridays.

When Jennifer’s home kitchen bulged from the increased volume, she launched a spin-off venture, The Joy Bus Diner, in July 2016.  It’s located on Shea Blvd., just east of the 51 Freeway.  Breakfast and lunch are served every day except Mondays.  All of the Diner’s profits fund the Joy Bus’ operational expenses and growth initiatives.  Since the Grand Opening, the number of deliveries has tripled to 40 per week.

Each shift at the Diner features one or two employees and volunteers as host and prep cook.  My “Season of Sundays” duty was to be a lunch host on New Year’s Eve.  Sundays are typically the busiest day and Jennifer expected more than 200 customers since it was a holiday.  Hosts are trained to welcome and seat guests at the 15 tables, make coffee and orange juice and share the Joy Bus story with the uninitiated.

But, as Jennifer is frequently reminded, operating a volunteer-reliant organization doesn’t always go as planned.  It’s quite possible the famous lemonade and chicken salad metaphors were coined by restaurant owners.  When she didn’t have enough volunteers for the previous day, she made a desperate plea to a local agency that places former felons back into the workforce.  Let’s just say that didn’t go well and she decided it would be wiser not to open on Sunday rather than risk subpar customer experiences.

However, a closed restaurant doesn’t mean a day off.  My shift was rescheduled to helpB7CD70AA-B106-4DF0-B0CF-CB24EDAC2719 prepare items for Tuesday.  I arrived at 8 a.m. and was welcomed by Victor.  It was the beginning of a long day for him as he expected to finish about two hours into 2018.  He directed me to the necessary ingredients to make the sauce for the Reuben sandwiches and the seasoning for potatoes which required me to mince six onions.  I haven’t cried that much since the MASH finale.

I don’t think my Jordanlike tongue-out technique will catch on but I was happy to emerge with all digits and no fines from OSHA.  The Diner’s manager, Lisa, warned me that most volunteers tap out before cleaning the greasy equipment and sweeping the kitchen floor.  I took that as a challenge and I made it through that without shedding a tear.

I could see Jennifer twitch a little whenever she had to turn away a customer.  It’s a delicate balance to manage overhead costs while trying to maximize revenue for a separate non-profit entity.  Any unexpected development like an empty restaurant on a holiday Sunday or the recent minimum wage increase makes a big difference.  Selfishly, the morning worked out well for me because I had more time to ask questions than I could have during a normal shift.

Jennifer grew up in the Valley and attended NAU but there was a lot of movement before she settled here again.

FD533482-B88F-47EC-B5BB-A8DE7042313EEven though she’d never visited Portland, she figured there was pent-up demand for authentic Mexican cuisine so she moved there to open “El Grillo” restaurant.  Fortunately, her assumption was correct although her alternate career path would have made a great story as well.  She played bass guitar in a punk-rock trio named Sub Lux.  They even cut an album called “Igneous Rocks” but stardom was not to be.  Maybe they were just ahead of their time…my research uncovered a rare performance video on YouTube and I’m hoping for a reunion tour.

She sold the restaurant and used the profits to move to Puerto Vallarta with her newborn to open another Mexican restaurant.  Stints in Tijuana, Spain and Italy followed before returning to the U.S. to open an Italian restaurant in Scottsdale.  After selling that venue, she worked for a food distribution company where she made great industry contacts, some of whom now serve on the Joy Bus Board of Directors.

Before entering the non-profit universe, Jennifer felt people were pre-occupied with their own lives and routines.  Now she feels strong connections with every client she serves, each volunteer and the customers who come to the Diner to make a difference.  They all feel like family members which she never experienced at any of her for-profit ventures.

She recently attended a “Food is Medicine” conference in Washington DC where she met many people with similar missions who reignited her passion.  Her ambitious plans for this year include finding a larger location and opening an organic pantry where any local cancer patient can select free fruit and produce.

It’s not a coincidence or fad that healthy food delivery companies are sprouting everywhere and Amazon is buying Whole Foods.  It’s a grassroots movement that’s gaining steam everyday.  I suggest everyone make a Bus stop to satisfy your belly and heart.

Visit WWW.THEJOYBUSDINER.COM and WWW.THEJOYBUS.ORG to learn more about each program and make financial donations.  You can register to volunteer to deliver a meal or serve as a Diner host or prep cook at WWW.JOYBUS.ORG/VOLUNTEER.  Follow them on Facebook and Instagram to see photos of the menu items and stay apprised of all the activities.

 

SEASON FINALE @ HUSHABYE NURSERY

WEEK 15 RECAP

Inspiration can strike at any time or place.  Maybe it’s sparked by motivational words of a stirring speech or the breathtaking colors of a sunset.  Reverend Donna Christine Park has never followed the traditional path so it’s fitting that her life-changing moment happened at the unlikeliest of locations — the Sweet Tomatoes restaurant on Dunlap Avenue in central Phoenix.

It was on June 25th, 2008, as she was settling in for lunch with friends, when she noticed a gathering of youth scouts and men in military uniforms.  She felt a sudden gravitational pull and ventured over to their table to ask about their story.  They told her they’d just finished packing snacks and toiletries for troops in the Middle East.  One of the military reps mentioned in passing that they couldn’t meet the troops requests for children’s shoes to distribute throughout the villages.  That statement hit Donna like a lightning bolt and consumed her thoughts for the rest of the day.

The very next morning, Walk a Mile in My Shoes (WAMMS) … On the Path to Peace, was formed.  She now concedes if more time was spent analyzing the situation, she likely644437_580331618653474_1720471909_n wouldn’t have continued.  How could one unemployed 56-year-old woman who doesn’t drive because of health and financial issues start a non-profit from scratch?  But, as the proverb says, “Every meaningful journey begins with one small step.”

The organization is named after the title of a 1970 song by Joe South and the Believers (later covered by Elvis, Johnny Cash and Bryan Ferry among others).  The lyric, “Before you accuse, criticize or abuse, walk a mile in my shoes,” always resonated with Donna.  She knows first-hand that everyone faces challenges and tragedies and deserves the chance to overcome them without judgement.  Her battles included fending off homelessness and spending many nights praying for the end of her pain and suffering.  The charity’s suffix was added because she’s tried to model her life after people who promote inner and outward peace.  This unexpected calling — she feels it was a “voice from the angels” — gave her a passion to pursue.

She focused on gathering new or “gently loved” shoes then sent them to her military contacts stationed in Afghanistan.  She was buoyed with feedback that those shoes were the first ones many of the village children ever owned.  Campaigns to collect shoes for U.S. children followed.  There were times she didn’t know if WAMMS could endure but then a stranger in the post office would pay the cost of a shipment or a person she met in other cities would invite her to their home to coordinate local donation programs.

As the 10th Anniversary approaches, she’s spearheaded donations of 2,800 pairs to the Middle East and 33,000 pairs across the U.S.  Her military contacts have finished their tours so that component has diminished but there’s been domestic growth in many areas.  There’s now a “Flip Flop Adventure” campaign before the brutal Arizona summers and an annual “Souper Bowl” program that collects in-kind donations for local food banks before the big game.  I joined her on Christmas Eve to help with her holiday tradition…delivering donated poinsettias to the lonely and infirm.

I met her where she’s spent most Sundays the last ten years — Unity Church in Mesa.  It wasn’t difficult to pick her out of the crowd since she was the only guest in a “Mrs. Claus” costume (one of many festive outfits she wears throughout the year).  After a welcome prayer, the lights were dimmed so everyone could close their eyes and meditate.  That was very relaxing until the mood was shattered by the Jingle Bells of a cell phone that interrupted the O’ Silent Morning.  After the service, Donna and I packed her walker in my back seat and two boxes of poinsettias in my trunk.

Our first stop was Mi Casa nursing home in Mesa.  Donna cheerfully greeted each staff member and handed them candy canes.  She had requested a list of patients who weren’t going to have family visitors during the holiday season, although both beds in one room were used by a husband and wife.  She lit up every room we entered.  Some of the patients were sleeping but the others gleamed when they saw Mrs. Claus bearing a gift.  Donna held their hands and told them they’re in her prayers.  She remembered a couple of the patients from the Spring when she delivers Easter Lilies.

We proceeded next to the Lund Hospice of the Valley facility in Gilbert.  There were family members in most of the rooms tending to their relative although one patient named Sandra was alone making masterpieces in her adult coloring book.  The deliveries and Donna’s message were appreciated by all.

The afternoon went so smoothly that we had time for lunch.  Take my word for it — there aren’t many better people-watching opportunities than walking into a Panera BreadIMG_0620 restaurant with Mrs. Claus on Christmas Eve.  I was invisible by comparison and now have a new benchmark when anyone refers to themselves as a “people person.”  Whenever a family with young children was seated, Donna looked at me and politely said, “Excuse me but duty calls” then would approach their table bearing candy canes and a friendly voice.  The smile from one nine-month old girl was the perfect age bookend to the day.

4F0C8588-D567-46E0-8EA1-AB653FB2E2C4

Donna was born and raised in Irvington, NJ and, after a few years in Southern California, eventually settled in Arizona in 1987.  She has one daughter and four grandchildren.  She was ordained as an Independent New Thought minister which she describes as a follower of “Practical Christianity.”  In 2014, she was recognized for her philanthropy and peace work and was invited to a conference in Seoul, South Korea.

She loves using an inspiring or funny motto at any opportunity.  Since that divine
intervention near the salad bar, she refers to herself as “The Old Lady with the Shoes” and WAMMS as “The Little Non-Profit that Does.”  She’s worked tirelessly with a shoestring budget to cobble a positive national footprint (hey it’s my blog, I can pun if I want).

You can follow her progress at WWW.FACEBOOK.COM/WAMMS now and help is as close as your own closets.  Simply gather the “gently loved” shoes of any size to start a collection campaign within a neighborhood, school, church or other organization then reach out to Donna to make delivery arrangements.  She’ll make sure they’re distributed to needy people throughout the Valley.  Just tell her you were referred by Mrs. Claus’ driver.

 

WEEK 16 @ JOY BUS DINER

 

 

 

 

WEEK 14 RECAP

In 1977, David Bowie and Bing Crosby formed an unlikely pairing to cover the holiday classic, “Little Drummer Boy.”  Two years later, another enduring duet debuted and has brought cheer and companionship to Valley residents ever since.

DUET is recognized as “A Partner in Health and Aging” that meets the needs of Duet_Trademark_HORZ_4C - 2013homebound adults and others with compassion, dignity and hope.  That mission is reinforced in its logo — a butterfly made of two silhouettes facing each other, like those ink-spot designs.  Even though Duet covers all of Maricopa County, every client is classified as a neighbor.  Whether they prefer to live at home or can’t afford a facility, the number of neighbors Duet serves has doubled in the last two years.

Odds are someone nearby could use your help.  Maybe you don’t see them as often anymore.  Perhaps their blinds are always drawn or relatives visit more than usual.  They may be too proud to reach out for help, but the smallest assistance can brighten their day.

I volunteered Sunday as one of nine Men of the Hour at Duet’s largest annual DSCF9560fundraiser.  The “27th Poinsettia Tea” at Hyatt Gainey Ranch attracted nearly 400 people.  Our first task was to sell raffle tickets for the chance to win one of the many donated gifts. After guests enjoyed scones and finger foods, it was time for the “Call To Compassion.”  It’s similar to a live auction but the audience wasn’t bidding on prizes, just the opportunity to donate.  That allowed several people to contribute simultaneously as the emcee gradually decreased the dollar levels.  One person donated $5,000 and three guests in my section contributed $1,000.  We raised nearly 75k in ten minutes.  All the money generated by the event ($96,124) will fund Duet’s various programs.0166_BGT4338

Other agencies offer similar support but Duet has some unique differences:  Every service is free and the elderly aren’t the only group that benefits.  One of the fastest growing target audiences is referred to as “Grandfamilies.”  There are more than 100,000 children in Arizona being raised by their grandparents or other relatives because of substance/physical abuse, incarceration or death.

Grandparents encounter legal issues and other matters they didn’t experience during their first tour of duty.  Duet’s assistance helps keep the families together by offering support groups, respite care, estate planning and financial backing for group family activities, summer camps and after school activities.

Many times, the closest family member or friend is thrust into the role of caregiver.  The arrangement begins with good intentions but becomes strained if complex conditions like Dementia and Parkinson’s arise.  Studies show caretakers often predecease their family members because of the increased workload and stress.  Duet has access to resources to help when the caregivers become overwhelmed.

Anyone 18 and older can be a Duet volunteer.  They must attend one 2 1/2 hour orientation for training, fingerprinting and background checks.  Volunteers can choose the service(s) to provide and how many “neighbors” to help.  During a one-hour weekly commitment, you can grocery shop for/with someone, transport them to a medical appointment or simply stop by for a friendly visit.  To reserve a spot at the next orientation on Saturday, January 6th in Glendale, email your contact information to volunteer@duetaz.org.

During the fundraiser, Dr. Wilma Basnett Emerson received the 2017 Award for exemplifying Duet’s mission.  She elicited audience chuckles in her acceptance speech when she recalled a saying her mother always mentioned when she needed her young daughter’s assistance:  “Make yourself useful as well as ornamental.”

We can all live by that advice.  There’s someone who needs you as their Duet partner.  Demographics show that people are living longer and spending more of their money on healthcare.  The organization moved into new, larger headquarters last week to meet increased demand.  There’s currently a waiting list of about 80 people who have requested Duet services.  Visit the interactive map at WWW.DUETAZ.ORG to find people near you.

Additionally, if you know someone who would benefit from Duet’s services, encourage them to call (602) 274-5022.  All Arizona taxpayers who make financial donations by December 31st will qualify for a dollar-for-dollar Charitable Tax Credit.  You can also sign up to receive Duet’s newsletter and follow them on Facebook, Instagram, LinkedIn and Twitter.

Photo credits:  Bridget Levi

WEEK 15 @ HUSHABYE NURSERY

WEEK 13 RECAP

I shouldn’t even be able to type the words child and hospice in the same sentence.  Where is auto-correct when I need it?

Despite continual medical advances, there’s still a shortage of resources to help families once the Make-A-Wish memories are packed away.  I volunteered at Ryan House, one of IMG_0543only three child and young adult end-of-life organizations of its kind in the country.

The foundation of Ryan House was laid thousands of miles away.  The Cottor family was living in England when they learned their youngest son, Ryan, was born with Spinal Muscular Atrophy, a disease that has no treatment or cure.  Doctors said Ryan had a 20% chance to celebrate his 2nd birthday and suggested the family sequester during his remaining time.

Shortly thereafter, they learned about the Helen & Douglas House in Oxford.  It was founded in 1982 to provide care to children during their final stages.  Their visits were so enjoyable and comforting for Ryan that the family sought a similar organization when they moved back to Arizona.  However, there was only one comparable venue in the nation (San Leandro, CA) versus 52 locations  in the less populous United Kingdom.  The discrepancy is attributable to the different governmental funding models.  Medicare began covering end-of-life costs for seniors in 1965 but people 18 and younger have only recently received similar attention.

The Cottors were forced to adopt an “if you build it, they will come” mentality.  With assistance from family, friends, community partners and financial grants, Ryan House incorporated as a non-profit in 2004.  In 2010, St. Joseph’s Hospital leased the current 12,500 square foot facility to Ryan House for 60 years at $1/year.  That deal helps the charity furnish a staff of 32 medical and administrative professionals, state-of-the-art equipment and crucial off-site programs while never having to charge any fees to any visitors.

Ryan House is divided into two segments —  Respite Care and Hospice Care — although patients often use both areas.  The Respite quarters serve families that need a temporary break from the daily demands of caring for someone with a life-altering or life-ending condition.  This allows them to rest, travel or spend quality time with their other kids.  It’s a significant leap of faith to relinquish their duties — even for a day — so Ryan House requires families stay in an on-site suite during the child’s initial stay.  This eases the child’s nerves and alleviates parental concerns.  Every child can stay up to 28 days in a year but no longer than seven days consecutively.

Many of the Hospice Care services occur in the patient’s home by the outreach team but patients can check-in to Ryan House at any time during their illness.  Tragically, some cases begin while the baby is in utero.  Let that sink in:  some parents must receive bereavement guidance before their child is born.

Remarkably, Ryan has defied the odds.  He’s now 16 and attends public school in north Phoenix.  He still has limitations but is active enough to spin “donuts” in his wheelchair. The skid marks on the Ryan House lobby floor are among many lasting imprints the organization has made for several hundred grateful families.

My Ryan House contact person was Alyssa, the Community Relations Volunteer Coordinator.  She began as an intern before becoming a full-time employee 18 months ago.  She began by giving me a private tour.  Full capacity is eight patients and three families but it was only half occupied on Sunday because those are typically the busiest Respite discharge days.

Privacy rules prevented me from meeting or taking photos of the patients so Alyssa and I organized a portion of the donated holiday toys.  IMG_0569The gifts vastly outnumber the patients so Ryan House will be distribute the surplus to other deserving Valley families.  When we finished, I proceeded to scrub and sweep two of the family suite patios.

Alyssa said that although patients are different ages with unique needs, the mission is always the same…”to make it a happy place despite the difficult circumstances,”  That’s done with activities, music and occasional pet therapy.  The bedrooms are customized into “cabins” with colorful, interactive themes such as “Abracadabra,” “Wild West” and “Once Upon a Time. ”

The bed in each room faces the playground and can be wheeled outdoors through extra wide doors The physical therapy room contains a hydrotherapy pool that helps prevent muscle atrophy and gives the kids temporary escapes from their wheelchairs.

Two other rooms also stood out: The SENSORY TENT room helps the children find a stimulation balance through colors and motions.  The STORY OF ME multimedia room includes video equipment and a green screen so kids can record visual messages for posterity.  Alyssa said the families often refer to those recordings for years so they can enjoy their child’s voice and smile.

Parents can utilize the peaceful Sanctuary Room to relax or discuss medical matters with doctors.  Outside that door is a Memorial Garden featuring walls adorned with ceramic IMG_0561tiles.  Each child that passed away is commemorated with a tile with their name on it in a color and design selected by the family.  There are nearly 300 tiles on display which calculates to almost four per month since Ryan House opened.

To read better stories than I could ever write about for the comfort and dignity Ryan House provides, visit WWW.RYANHOUSE.org and click the poignant “Our Families” section under The Who We Are tab.  You’ll see photos of the children and read first hand accounts of their experiences.  You can also donate money or in-kind items on the families’ holiday wish lists and learn more about the 2018 fundraiser events.

WEEK 14 @ DUET (Partners in Health & Aging)

 

WEEK 11 RECAP

“Now What?”

Whether it’s melanoma, leukemia, lymphoma or any other variant of cancer, the stunning diagnosis provokes an avalanche of fears that ultimately ends with those two words.  It’s especially traumatic for mothers with young children.  Suddenly (and often reluctantly) the caretaker who cures scraped knees with kisses and instinctively knows whether to feed or starve a fever must turn their attention inward.

A wise first step would be a phone call to the appropriately named group, HEAL.  The Happily Ever After League assists women of all ages with any stage cancer for as long as they’re receiving treatment and have at least one dependent child.  No woman in need is turned away or buried on a waiting list.IMG_0516

HEAL’s humble beginnings originated around a kitchen table.  When Lauren Daniels was diagnosed with breast cancer in 2004, her three children ranged in ages from 1 to 11.  She received support from her best friend, Colleen Katz, throughout the long ordeal.  Once Lauren was in remission, they brainstormed about how they could aid others by providing practical solutions for pressing needs during critical times.

They tout HEAL as “a support group without the Circle.”  Neither had a formal business degree but they developed parallel skills from years at an unlikely training ground — their Parent Teacher Organizations.  They had experience raising money, motivating personnel and planning events.  Their first HEAL event raised $50,000 and they never looked back.

“We thought we’d do a lot of house cleaning and babysitting,” said Colleen.  Instead, they helped women face various far-reaching issues.  Cancer patients tend to receive a burst of assistance throughout diagnosis and treatment but their needs don’t wane with time. What about the subsequent months/years when they experience neuropathy or challenges re-entering the workforce?

I spent Sunday volunteering at HEAL’s annual Thanksgiving party at its headquarters in north Phoenix.  For two hours, the “Healing House” was a “cancer free zone” where moms and their families shared laughs, hugs and a feast fit for queens.IMG_0521

I had to double check the address because I didn’t see signage or a parking lot.  It was a typical house with desert landscaping in a mature neighborhood.  I learned later this is by design.  Rather than a sterile clinic or impersonal office space, visitors prefer the comforts of a venue that feels like home even though no one actually lives in this one.

It’s the third Healing House location since 2007.  This property has a spacious backyard and the four bedrooms have been converted into a kids playroom, a serenity/prayer room, Lauren’s office and the Pantry.  On Sunday, every mom did some “controlled shopping” from the 1,500 Thanksgiving food items collected during a local school’s food drive.  The pantry is open one day each month and saves the families an average of $75 which then can be directed to medical bills or transportation expenses.

Before the final year of the Healing House’s five-year mortgage, a generous donor paid off the balance.  That reduced overhead expenses and accelerated the turnaround time from donation to distribution.  Every newcomer is given a $500 American Express gift card to spend as they wish.  That’s noteworthy because an unforeseen side effect of cancer is the loss of being able to control plans or choices.  Women who were accustomed to an organized daily schedule are now at the mercy of doctor availability.  HEAL tries to restore their decision-making ability whenever possible.

On Sunday, the team of volunteers was actually too efficient.  They left me with nothing to do.  I was as useful as a snowplow driver so I spent the free time chatting with some of the 100 guests to learn their incredible stories.

Tatyiana credits her daughter with saving her life.  She experienced extreme pain breastfeeding that she didn’t feel with her first child.  That provoked a trip to the doctor which revealed early stage breast cancer.  She chose to have a double mastectomy but still wonders how the cancer would have spread if it went unchecked.

The chemotherapy treatments sapped the stamina necessary to finish a full day as a makeup artist.  Before she knew it, her savings account diminished and eventually received a notice that her utilities would be shut off right before the holidays.  That’s when she called HEAL and an action plan was created.  The gift card helped pay bills but she couldn’t afford any Christmas gifts for her girls.  She choked up recalling the day she weeped uncontrollably in the Healing House driveway after receiving three bags of donated toys.  She’s now cancer-free and intends to pay it forward by volunteering.

Viola has been in and out of remission for almost a decade with a rare form of thyroid pelvic cancer.  She’s already endured four surgeries and may face another one soon.  “The people at HEAL are angels,” she said.  “I’ve made great friends over the years and they’re always available when I have a question or need.”

One popular employee was absent from the party.  Lord Hamilton, aka Hammy,image1 is a 40-pound pig that entertains everyone he meets.  He’s the designated “Director of Emotional Support”  and constantly brings smiles to people at opportune times.  Lauren dreams of opening a HEAL farm because she’s seen the calming influence animals provide.

HEAL and its founders have experienced a lot of personal and professional growth the last ten years.  Lauren and her sister, Lisa King, have written “Tiny Life Changes,” a book with nuggets of wisdom for not only cancer patients but anyone looking to improve their self-esteem or business acumen.  It will be released January 9th.  The group’s services now include a Back-to-School backpack/lunchbox donation program and new health and wellness classes that help moms with nutrition and weight loss.

Next Tuesday is the 6th Annual #Giving Tuesday.  It’s a philanthropic follow-up to Black Friday and Cyber Monday.  Please consider HEAL and the other causes on the SoS Schedule.

Click WWW.HAPPILYEVERAFTERLEAGUE.ORG to make a financial contribution and learn about volunteer opportunities such as the “League of Friends” outreach program and two annual fundraisers, the “Fairytale Tea” and “Heels for HEAL” brunch.  You can follow them on Facebook and Instagram.  Feel free to share this to any moms who could use HEAL’s helping hands.

Families across the country will gather today to enjoy great food and cherished memories.  I’m thankful for the chance to share Sunday with women who were introduced by tragic circumstances but now are members of one big family.

Week 12 BYE (I’ll be spending the holiday weekend with family).

WEEK 10 RECAP

It seems some people are destined to live up to their name.  There’s even a term for it — nominative determination — the theory that some people gravitate to areas of work that fits their names.

Is it just coincidence the world’s fastest runner is named Usain Bolt?  Was it simply luck when Chris Moneymaker raked in $2.5 million by winning the World Series of Poker main event in 2003?  Of course, Prince Rogers Nelson grew up to be musical royalty.

But my favorite example is much younger with a perfectly descriptive middle name.  Amanda Hope was diagnosed with leukemia at age nine yet her attention was alwaysAmanda on the 40,000 other children in similar situations.  Amanda would ask, “If we’re have to fight this disease, can’t we at least be uplifted and comfortable?”

She recognized that children felt awkward and vulnerable in the backless hospital gowns so she designed bright tie-dyed shirts and named them, “ComfyCozys for Chemo.”  Each is specially fitted with zippers, buttons, snaps or pockets that enable nurses to access theIMG_0486 child’s medicine port without removing any parts of the gowns.  In the eight years since, more than 6,000 pediatric cancer patients across the U.S. and in eight countries have worn their ComfyCozys during chemotherapy treatments.   That number is projected to grow significantly by the end of next year as word of mouth spreads and partnerships are finalized.

I spent Sunday volunteering in a new program called “Dignity for the Journey.”  It’s modeled after the popular school project, “Flat Stanley,” in which students color their paper “Stanley” then mail him to friends/relatives so he can tag along on their adventures.  The students receive photos and facts about the places Stanley “visited” then present his experiences to their class.

Only ten other people have participated so far although some of the “Journeys”  featured exotic locales as Peru and Costa Rica.

Mine was considerably less adventurous — a 45-minute drive to Phoenix International Raceway for my first NASCAR race.  My wingman buddy, Mike, and I arrived three hours before the race to enjoy unique access in the “pits” to see the cars up close.  Nearly 50,000 others joined us later to watch the penultimate race of the season and career of the most popular driver, Dale Earnhardt Jr.

This project substitutes Stanley with two rainbow pins. IMG_0479 I wore one pin (although it was blocked in some photos) and returned the other pin, event pictures and memorabilia to the charity.  The items will soon be given to a young patient who loves cars or simply needs to brighten their sterile hospital room.

Amanda was on my mind throughout the day.  Like every pediatric cancer patient, she endured many physical and emotional obstacles but she never lost her kilowatt smile.  After her diagnosis, she spent much of the next 18 months in the hospital and underwent chemotherapy for a total of three years.  While most of her friends spent their free time at pool or slumber parties, she celebrated remission at her “No More Chemo” party in March, 2011.  She soon resumed her full-time school schedule and karate lessons.

Three months later, Amanda attended “Bring Your Child to Work” day at her mother’s office but had to leave early because of a headache.  A couple hours later, the left side of her face was paralyzed and she couldn’t swallow.  The family learned a mass had developed in her brain and a biopsy revealed it cancerous.

Optimism returned when Amanda’s oldest sister was deemed a perfect match for a bone marrow transplant.  Her spirits were high despite having 8-10 IV tubes every day to prepare for the surgery.  However; one week before the scheduled operation, doctors announced that her cancer cells mutated to levels that eliminated her as a transplant candidate.  She never gave up hope and continued to smile with her family, friends, fellow patients and hospital professionals who cared for her.

Amanda lost her valiant battle on March 30, 2012.  Her namesake non-profit, Amanda Hope’s Rainbow Angels, was founded the following year. IMG_0485 A selfless idea that originated in her Phoenix hospital room has blossomed into an active non-profit organization with three employees, two part-time subcontractors and a spacious new headquarters.

The outreach capabilities have evolved as well.  The product line now includes dresses, onesies for infants, “Chemo Caps”  beanies and “Chemo Covers” that drape over the machinery so patients can see something that’s comforting instead of scary and intimidating.  There are support groups and counseling provided for parents in the new “Comfort and Care” program.  The Rainbow Angels’ calendar is filled with fun events they call “major distractions” like periodic Craft Days, Spa Days and Teen Taco Nights twice a month.  More than 100 patients currently benefit in three Valley hospitals and one in Tucson.  A spin-off chapter in Las Vegas began operating several months ago.

Amanda would certainly be proud of her legacy to give comfort and dignity to pediatric cancer patients around the world.  You can sustain the momentum by following them on Facebook and visiting WWW.AMANDAHOPERAINBOWANGELS.org to make financial and in-kind donations such as socks and stuffed animals (must be new because of hospital rules) or gift cards to the families are especially appreciated during the holiday season.

There are immediate needs for volunteers who can help prepare for the headquarters’ Open House on December 5th, assist at the Winter Festival on December 10th or host a “Dignity for the Journey” during your family holiday travels.  Email Jessie Swygert at j.swygert@ahras.org for additional information.

The average pediatric cancer patient is diagnosed at age six.  The number of annual reported cases hasn’t declined in two decades.  One of the most striking pages on the website is the link to “Amanda’s Connections.”  It features information on 51 (FIFTY-ONE!) organizations with similar missions.  I know the exact number because I counted in disbelief and understand it’s a minute sample size.

Hopefully one day groups like Amanda Hope’s Rainbow Angels won’t be needed.  Until then, we can only pray that — somewhere out there — little Bobby or Betty Cure are planning a career in medical research.

 

WEEK 11 @ HAPPILY EVER AFTER LEAGUE (HEAL)

 

WEEK 9 RECAP

imgpsh_fullsizeeventImagine re-living the worst day of your life over and over again in front of hundreds of strangers.  Most of the re-creations provoke gasps and tears.  Any incurred expenses will come from your coffers and there’s no guarantee your efforts will generate the desired results.  If this sounds like a cruel punishment, you may be surprised to learn that Cari Fonseca volunteers to do it and wants  to increase the frequency.

The catalyst was a Monday evening at 7:30 when her home phone rang,  Considering the time and day, it should have been a friend, relative or telemarketer calling.  Instead, it was her son’s buddy with a message that made her go numb and altered the course of her life.

Her son, Brandon, along with friend Joey and Adam, were known as the “Three Musketeers” because they were inseparable for nearly 17 years.  Joey struggled but finally blurted to Cari that Brandon and Adam had been a violent car crash.  Brandon was the driver, Adam was in the passenger seat and their mutual friend, Jessica, was in the back seat.

It was August 20, 2001, just two months after Brandon’s 21st birthday.  The trio was en route to Brandon’s apartment after several hours of “day drinking” – a few beers here, a few more there.  One mile from the destination, Brandon’s Honda veered into oncoming traffic and collided with a large van.

“Parents worry about their kids in the late night hours of a weekend,” said Cari.  “This happened on an ordinary Monday.  I was in shock.”

She frantically called area hospitals to locate where her “John Doe” was airlifted.  It took two calls and one high-speed drive to get to his bedside.  Doctors advised Cari to summon anyone who would want to say their goodbyes.  Adam had already passed away before his family arrived.  Jessica escaped significant injuries but would face a heavy dose of survivor’s guilt.  Nobody in the other vehicles involved were hurt although the van’s driver fled and police later confirmed it had been reported stolen.

Brandon survived those critical hours but spent the next month on life support.  His family was told that he’d face vehicular manslaughter charges when he recovered.  That still hasn’t materialized but the family is certainly serving a de facto life sentence.IMG_0450

He was officially diagnosed with a Traumatic Brain Injury and spent the next 18 months in and out of the hospital.  He retained some long-term memories like colors, shapes and his birthday but he can’t converse enough to determine any recollection of the accident or knowledge of Adam’s fate.  His days are now filled by watching videos and playing a handheld computer game with buttons and sounds that provide stimulation.

The plan on Sunday was to help Cari push Brandon in the 41st Annual 3TV Phoenix Half Marathon but he was discharged from the hospital only four days earlier after a three-week hospital stay.  Sixteen years after his accident, he endured two major surgeries to treat double aspiration pneumonia, gall stones and a urinary tract infection.  He’s currently on feeding tubes and his verbal communication abilities have eroded even more with no assurance they’ll return.

Since Brandon couldn’t participate, I scaled back the mission to my first-ever 10k.IMG_0447  I arrived two hours early to scout my competition.  I figured since I was entered, I may as well try to win.  Yet when I spoke with some other runners, I learned they actually trained for this event and even seemed excited to run.  I adjusted my expectations from winning to surviving.

The down time set my mind racing before my feet started:  “Why did they ask me for an emergency contact?,”  “Should I carry a flare?,” “Were three Jack in the Box tacos really the best choice for a pre-race carb load?”

Fortunately, Cari downshifted her pace so I could keep up.  That gave me ample time to ask questions about life before, on and since the fateful day.

Prior to the accident, Brandon was a strong, active young man.  In a stranger-than-fiction irony, the family operated “Neuro-strength Physical Therapy,” a clinic that treated patients with spinal cord and brain injuries.  Brandon worked there with his parents while taking related classes at Paradise Valley Community College.  His stepfather, Arnie, taught many patients how to use adaptive equipment so they could enjoy skiing and other activities.

Brandon often told Arnie how they would grow the business after he graduated.  In 2002, Arnie completed that goal by opening a 6,500 square foot facility in Tempe that featured physical, occupational and speech therapy.  Brandon became “Patient #1” and relearned how to feed himself and walk with a walker.  Arnie founded The Next Step Foundation two years later to relay how Brandon’s split-second decision turned into a IMG_0440life-changer.  Unfortunately, the economic crisis and rising medical expenses forced the family to close the clinic in 2012.

Cari had been inspired by the story of Dick Hoyt, an ESPY award winner.  He wasn’t an accomplished athlete but he dedicated himself to the sport and went on to push his son in a custom wheelchair in 72 marathons and seven triathlons.  She began pushing Brandon in his chair for morning neighborhood walks and eventually registered for their first competition.  The duo has now participated in six marathons and numerous other long-distance races.  It was a healthy way to promote their foundation but Cari couldn’t shake the feeling that she could do more.

In 2012, a divine intervention stopped her in her tracks.  Brandon deserved to be more than another statistic so she decided to turn the tragedy into a strategy.  She began cold-calling Valley high schools offering to share Brandon’s story as part of a campaign called “Vow to Drive Sober.”  They’ve since been to more than 100 schools and clubs throughout Arizona (as well as California and New Mexico), primarily before Homecoming, Prom and Graduation when their message is especially timely.

She begins the assemblies by selecting a dozen volunteers to role-play in scenarios that teach ways to prevent their friends from driving after they’ve been drinking.  They then try on three sets of “beer goggles” that replicate vision after slight, moderate and heavy drinking.  The most emotional component is a 12-minute video the family produced that features footage of Brandon before the accident, news coverage of the collision and interviews with Jessica and family members.  A Q&A session concludes every event.

It’s a sobering reality for a demographic that feels invincible even though a Cactus Shadows HS student died last Thursday afternoon when the 21-year-old driver in her car and the driver of the other vehicle were both impaired.  Some students; however, make the effort to approach Cari afterward to offer a hug or share stories how drunk driving has affected their family.

It takes a team effort just to get Brandon’s 180-pound body from the bed the into the bathroom and custom van just to get ready for each presentation.  Yet, she still has critics — including her ex-husband/Brandon’s father — who accused her of using Brandon as a sideshow prop.  “Believe me, this is not how I planned to spend the rest of my life,” she said.  “But I can tell Brandon enjoys the interaction and applause and I just hope one kid in every audience learns from his mistake.”

Rather than try to preach to people about drinking, she simply wants them to plan ahead.  That’s why she forged a partnership with Uber.  The first time a passenger enters the promo code DRIVE SOBER in their Uber request, they receive a $20 discount (often covering the entire trip) and Team Brandon gets a $5 donation.  She encourages people to download the app in advance so it’s active when they need it.

As we crossed the finish line, I looked for a defibrillator and Cari sought people to invite to the inaugural Vow to Drive Sober 5k/1 mile Event and Expo on December 9th in downtown Phoenix.  It’s the first public event coordinated by The Next Step Foundation: Team Brandon.  Cari used proceeds from a grant awarded by the Phoenix Suns in hopes to create an annual tradition.  You can register at http://www.vtdsrun.phxfr.org

Cari and her family personify the adage that legacies are defined by deeds not mistakes.  There are several ways to help.  Click www.thenextstepfoundation.org to make a financial donation which can defray event costs and help other families with special needs procure running chairs.  This could be an ideal volunteer opportunity for students who need community service hours.  Also, if you know a school or civic organization that would want a presentation, email cari@teambrandon.org.

Below is the video shown in assemblies:

 

WEEK 10 @ Amanda Hope Rainbow Angels

WEEK 8 RECAP

Scientists believe people generate 13 impressions within seconds of meeting someone for the first time.  The brain immediately sizes up everything from social status to intellect.  GIGI’S PLAYHOUSE is working to add one more behavioral reaction: acceptance.

Gigi’s Playhouse is the Valley’s only brick-and-mortar venue that exclusively serves families affected by Down Syndrome.  It’s designed for families because every relative is IMG_0430impacted when one member has the most common chromosomal disability.  It can be non-verbal like receiving prolonged stares or stinging comments like when someone tells a new mother, “Sorry to hear the news” when they expect to hear “Congratulations” for their joyous family addition (yes, that actually happens.)

I intended to volunteer at its annual Fall Festival but there was a mix-up that I’ll blame on Google Maps but was likely user error.  It was disappointing to miss the festivities but I was compelled to visit the Playhouse two days later where I spent an hour with Cathy Judge.  Her formal title is “Site Coordinator” presumably because “loving grandmother who volunteers 40-50 hours a week” won’t fit on a business card.

After watching one video about Gigi’s Playhouse, Catherine’s daughter, Jennifer, and two friends instantly felt they needed to take action.  Since approximately 6,000 Down Syndrome babies are born in the U.S. every year, they felt there was a growing, underserved audience so they opened the Playhouse in Scottsdale on Valentine’s Day in 2015.

Their projections have been validated.  It is now one of the fastest growing chapters among the 33 nationwide.  At the end of 2015, 242 families were registered with that number blossoming to 428 by the end of last month.  Amazon and Apple would envy its 85% growth during that span.  An average of 8-9 families join every month.

To meet demand, they leased the adjacent space to open Gigi’s University which will debut in 2Q 2018.  The curriculum is tailored for adults with Down Syndrome through an array of 10-week life training programs about cooking, finances, fitness and self-esteem building.  The students will be also learn about potential careers by operating an in-store coffee/ice cream cafe and retail shop called “Hugs + Mugs.”

This endeavor has been a personal labor of love for Jennifer.  She recalled her family’s own emotional learning curve that began 21 years ago when her daughter, Caitlyn, was born.  Like half of the Down Syndrome babies, Caitlyn had heart problems and spent her first month in the hospital.  She can’t help but wonder how much information and comfort she would have received if the organization existed at that time.

Gigi’s Playhouse offers a safe, nurturing environment that allows kids to be themselves without judgement.  There are classes and activities for all ages.  Tuesday mornings feature LMNOP (Language, Music ‘N Our Peeps) which teach newborns to 3- year-olds IMG_0429through basic sign language and other forms of communication using music and language activities.  The “Leaps and Bounds” program features movement and muscle development for 3-5 year olds.  “Playhouse Pals” teaches 5-12 year-olds how to engage socially with peers while “Teentastic” helps 13-18 year-olds build social skills through team-based activities.  Other activities include Art Explosion, Music Therapy and Dance Mania.

When a child reaches age three, they become eligible for literacy and math tutoring.  The volunteer tutors have logged more than 7,000 hours so far this year.  Lessons are customized to help the kids grow whether they’re home schooled or are integrated into public schools.

The group relies on fundraisers and grants so the families can participate for free.  Gigi’s strives to break the myth that Down Syndrome kids have limited learning potential.  “If you set the bar low, that’s all they’ll reach but if you set it high, you might be surprised at how much they can do,” Catherine said.

When children are diagnosed either before or after birth, their parents are consumed with worry and questions.  Gigi’s Playhouse provides an oasis where they can receive support and advice from their fellow parents throughout every life stage.  One expectant mother recently visited to learn more about the resources months before her baby arrives.

That proactive approach is starkly different than you’ll find in some countries.  CBS News recently aired an investigative segment on governments in Iceland and Denmark that tout how they’ve “eradicated the disease.”  Since prenatal screenings began there in the Day-49-Natley-SYR-300x300early 2000s, almost 98% of the women in these countries who received a positive test for Down syndrome “voluntarily” terminated their pregnancies.  France checks in with a 77% rate and the U.S. is at 67% despite the fact most afflicted people have a typical lifespan into their 60s.  I hope Gigi’s Playhouse sends Gigi’s University Grand Opening invitations to every country’s leaders so they can watch the kids and talk to their parents.

Nancy Gianni founded the first Gigi’s Playhouse in 2003 in a Chicago suburb and named it after her daughter.  The corporate mission is to live in a world where individuals with Down syndrome are accepted and embraced in their families, schools and communities. Nancy received a CNN Heroes award last year.

There are several ways to make a positive first impression on Gigi’s Playhouse. Click www.gigisplayhouse.org/phoenix to learn how to refer a family, sponsor a child/program or make a financial or in-kind donation.

 

WEEK 9 @ THE NEXT STEP FOUNDATION (Team Brandon)