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September 20, 2012  

Weekly Photo Challenge: Everyday Life

I was going to hunt through my troves of photos for this week’s photo challenge, until I came across this image at my daughter’s cross country meet today.

I know that putting one’s legs up a wall in Yoga class is very relaxing, but never thought that this pose could come of use to runners. The shot was taken on an incline and the grassy slope hides the bodies of these teens so wonderfully so all you see is those legs.

Cross-country and track meets: this is a part of my kids’ everyday life.

August 23, 2012  

Fairport Community Rallies around Coach. My Interview with Gary Brown.

A Few posts back, I wrote about my wondering around Fairport, asking random people in the village about which local folks would make a good story and my brother calling me crazy for doing so. Well, if I didn’t wander around aimlessly, I wouldn’t have found a flyer about a golf benefit for Coach Gary Brown. And I wouldn’t have had the honor and the opportunity to meet this wonderful and brave family facing an incurable disease. Fairport Football coach Gary Brown, center, with his family, from left, Mackenzie, 17; Mike, 12; Max, 19; and his wife, Mary, at their Fairport home. Community support helped build the handicapped-accessible porch.

garybrownFairport Football coach Gary Brown, center, with his family, from left, Mackenzie, 17; Mike, 12; Max, 19; and his wife, Mary, at their Fairport home. Community support helped build the handicapped-accessible porch. / KATE MELTON
Written by
Stacy Gittleman

Get to know Gary Brown

Profession: Field manager at RG&E.
Family: Wife of 21 years, Mary. Sons Max, 19; Mackenzie, 17; and Michael, 12. Mother-in-law, Rita Clark.
Hobbies: Boating, fishing, hunting.
Brown’s advice for living every day:Make someone laugh. Give 110 percent to family and community. Banish the phrase “I can’t.”
What: 15th annual Fairport Football Alumni Association “Gary Brown Red Raider” Golf Classic.
When: 8:30 to 11:30 a.m. Sunday, Sept. 9.
Where: Victor Hills Golf Club, 1450 Brace Rd, Victor.
Information: Sponsorships $100. Portions of the proceeds will go to the Gary Brown Foundation for MSA Inc. For sponsorship opportunities and more information, contact Don Santini at (585) 223-1274.

When Gary “Brownie” Brown played center for the Fairport Raiders in the 1970s, his coach Don Santini took notice of how his enthusiasm and determination would unite the team at game time.

Santini again drew upon these traits decades later when he asked the 1977 Fairport High School graduate back to help coach the team as a volunteer.

In 2003, Brown, a field manager for RG&E, completed the New York State High School Coaching Certification program and joined the coaching team for the Raiders.

Santini, who retired from coaching after leading the Raiders from 1975-92, describes Brown as “a doer.”

When Santini’s widowed sister-in-law needed her house painted, Brown organized a crew of friends and students to get the job done. Brown in 2007 started an alumni fundraiser to sell bricks to create a “Walk of Pride” walkway on campus to benefit the football team and raise scholarship money for Fairport graduates.

For seven seasons, Brown taught students what it takes to be successful on the field. He helped them build speed, coordination and balance.

But starting in 2009, Brown noticed some troubling symptoms in his own physical condition.

He often felt dizzy and had trouble keeping his own balance. He could not run as fast as he did in previous years.

After tests and doctors’ visits that came up empty and just days after his oldest son Max graduated Fairport High School in June 2011, Brown was diagnosed by a doctor in Michigan with a rare, degenerative disease called Multiple System Atrophy, or MSA.

MSA is a progressive and incurable neurological disorder that impairs the body’s involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion. The Parkinson’s disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance, affects 15 out of 100,000 people nationwide.

“This has been very stressful on all of us,” Brown said in slurred speech — another symptom of the disease. He noted that his wife, Mary, and sons attend weekly counseling sessions with a therapist. There is also a counselor available to Max as he attends classes at State University College at Cortland.

Through therapy, the Browns have come to a realization that they can’t go through this alone. But with the outpouring of the Fairport community, they won’t have to.

In January, Santini and other close friends of Brown established the nonprofit Gary Brown Foundation for MSA. Money from the foundation will be used to help the family with medical and counseling costs, raise awareness about the disease and offer support to others in Rochester struck by this disease. So far, just two others with MSA in the Rochester area have contacted the foundation.

The first fundraiser held back in January drew 900 Brown fans out to roast the coach and bid on silent auction items. It raised $58,000. The next, a golf tournament sponsored by the Fairport Football Alumni Association, will be held 8:30 to 11:30 a.m. Sunday, Sept. 9, at Victor Hills Golf Club, 1450 Brace Road, Victor. In addition to funding athletic scholarships at Fairport High School, a “significant portion” of the money raised will benefit the Brown Foundation, said Santini.

Funds from this foundation have enabled Brown to enjoy the company of family and friends on a porch with a handicapped-accessible ramp.

Brown thanks local contractors like Westwood Development for donating their labor to build the porch as well as a handicapped-accessible bathroom and bedroom on the ground floor of their house. Bristol’s Garden Center also donated materials for landscaping.

The foundation also paid for a golf cart that Brown uses to drive to the school to watch football practices and games. Though he is no longer coaching, Santini said his reputation still carries on and he gets a warm welcome from the kids.

“Fairport Raiders past and present, and even little siblings not yet in high school, will come over to shake Brown’s hand,” said Santini.

Mary, who describes herself as a “Buffalo girl,” can understand why people like her husband want to spend all their lives in Fairport. She has been “blown away” at the support the community has bestowed upon her family.

“If I pick up the phone to one person for help, I get 10 responses,” she said, referring to her neighbors who have prepared meals for nearly a year and helped care for their sons while Brown travels to Michigan for treatments.

The prognosis is grim. Doctors have given Brown a life expectancy of four years. But Brown knows he will be in good hands. In 2007, Mary received her master’s in nurse practitioning at the University ofRochester, long before Brown became ill.

“You know what (the late) Steve Jobs said, how you can only connect the dots in life when you are looking backwards? I truly believe that. I truly believe there are no coincidences in this life.”

February 3, 2012  

Strike a Pose Just Like A Prayer: Will you Pray this Superbowl Sunday?

Madonna the singer who asked us to “strike a pose” in Vogue, the one who claims to study Kabbalah, will perform the halftime show for Superbowl Sunday.

The other day in my mid-week afternoon Hebrew school class, one boy, after feeling triumphant for correctly reading and translating some Hebrew vocabulary on the whiteboard, struck a kneeling pose ala Denver Broncos Quarterback Tim Tebow.

It seems like spirituality and sports are teaming up more and more. Which I find ironic, because inside houses of worship, my synagogue included, worshippers are becoming more sparse with each passing year. One main reason?  Attending religious services on a Saturday or Sunday morning is going head-to-head with scheduled team sports.

I know Tebowing is all the rage these days.  Blogger Keith Brown had a recent post showing people Tebowing around the world.  Tebowing at the Wall of China. And at the Vatican. And the Western Wall in Jerusalem! Getting down on one knee is hardly striking a Jewish pose of prayer. For one to really strike a pose of piety in Judaism, one needs to look like this:

Yes, it takes a bit longer to put on Tefilin than kneel on one knee.

So, is it okay to pray for one’s team? Does God really care who wins?

In today’s article in New York Blueprint, a website that chronicles events and happenings in the New York Jewish community, rabbis sounded off on the issue of praying for a sports team. While some said that any prayer is important if it is for something you believe in, other rabbis said prayer should be saved for something that has a real consequence.

Many churches and synagogues will open their doors this weekend not only for services, but for people to gather and watch the game. Perhaps, any draw that brings people into a house of worship may ease the way for that sports fan to renew their involvement with their congregation.

Aside from praying for one’s team to win, let’s pick some real reasons to pray:

Let’s pray that no players sustain concussions, broken bones, or life-threatening injuries on the field.

Let’s pray that everyone coming home from a Superbowl Party drives home sober.

For me, my world will keep spinning no matter which team wins. Instead, I will pray for several of my friends, all moms of young children, who are battling cancer.

I will also pray for the safety, and mere existence, of Israel.

I had a troubled sleep last night after watching the news that, fearing for its own existence, Israel is gearing up for a military strike against Iran this spring. They fear it might be too late to stop Iran from building a nuclear bomb.

Israel, staring down into the abyss of another Holocaust,  is tired of waiting for sanctions to work. Israel cannot wait for the world to act.

So, I will be praying that somehow, a peaceful intervention will put an end to Iran’s nuclear ambitions for good; and that no nation will have the capacity – or the will – to wish to wipe another country “off the map.”

January 27, 2012  

Courageous Transplants

Bryson gets help from his cousin. Photo by Kris. J. Murante/D&C Staff Photographer

A few weeks ago, I had the pleasure of meeting two transplants to Rochester from North Carolina and one all the way from Taiwan.

They came to be nearer to lifesaving healthcare resources. They came here for family and for love.

These transplants found all that in Rochester. What they also found was a community on ice.

Before I share their story, think about something you’ve complained about today.

Maybe you had an ache in your back. Or the winter weather makes you not want to get out of bed. Or your co-workers, siblings, roommates, spouse, etc., is driving you crazy. Keep your problems. You really don’t have any problems. Instead, count those blessings. 

Thank you to Amanda, the courageous single mom of Bryson. Thank you for calling me to make sure I had everything for my story while Bryson was once again in the ICU. Amanda was apologizing to me for not keeping in touch. 

When I told her not to worry and how instead how sorry I was that Bryson was back in the ICU because of complications related to his CP, she just said – “That’s okay. That’s just how it is.”

I saw Amanda and Bryson about a week later at a routine checkup for my son’s asthma. Amanda gave me a quick hello, thanked me again and said she had to run, she had six other doctors appointments for Bryson. 

Sadly, Bryson died about under two years from the time this piece was published in the Democrat and Chronicle. I am glad I was able to have written this to preserve his memory. 

 

There is a little ritual performed by Gliding Stars students each time they take to the ice at the Webster Ice Arena. Each skater is escorted onto the ice with one or two volunteers as a straight line forms across the center of the rink. Some stand independently while others use the support of walkers and arm braces. At the cue of their skating instructor, they chant a cheer: “Can we skate? Yes we can!”

With the help of his family, friends and the larger community in Webster, this can-do spirit lives within the tiny body of 6-year-old skater Bryson Sparrin.

Bryson, of Webster, was born prematurely at 27 weeks with cerebral palsy. In 2010, he contracted hydrocephalus, or fluid on the brain, and had to have shunts placed within his brain to relieve the pressure. Already coping with speech delays caused by cerebral palsy, the shunts further curtailed his speech development. He can carry on a conversation and express himself with short sentences, gestures and with the help of an iPad application.

In spite of it all, Bryson wants to be like any other boy his age. Getting on the ice with Gliding Stars is one more way Bryson feels like the rest of his peers.

Gliding Stars was started in Buffalo in 1994 by a figure skater who wanted to make the sport accessible to people with physical, mental or emotional challenges. The Rochester Chapter, which meets weekly in Webster, currently enrolls 35 skaters and meets each Sunday afternoon from November through April. The season culminates with a choreographed ice show where the students can show off their moves.

According to Rochester Gliding Stars co-coordinator Christie Leszczynski, also of Webster, ice skating provides Bryson and other disabled children with many benefits. Physically, it helps strengthen muscles and improve stability. Children who are otherwise confined to wheelchairs or have limited ability to walk get a great sense of freedom when their legs can glide over the ice. Emotionally, skating and making friends through the program boost the child’s self-esteem.

It costs $700 for each child to skate to cover insurance, equipment and renting ice rink time. Gliding Stars makes the program as financially accessible as possible to students by charging them only $140 per season. The rest of the tuition is offset by grants, community fundraisers and the dedication of volunteers.

As a skating instructor, Leszczynski modifies skating moves to match students’ capabilities. Some children master basic skills such as alternating feet and skating in a circle with a group, while others learn basic figure skating moves like spins and jumps.

The Sparrins moved to Webster in 2010 from Ashville, N.C. Here, they discovered a welcoming community, support from family and a dedicated team of 10 doctors at Golisano Children’s Hospital at Strong to treat Bryson.

When one of the doctors recommended that Bryson try out Gliding Stars, his mother was initially hesitant.

 

“I first thought, ‘There is no way Bryson can ice skate.’ But the first time he tried it out, I saw a huge smile on his face. Now, skating and being with friends on the ice is the thing he looks forward to most each week,” said Amanda Sparrin, a single mother.

Bryson gets around in a powered wheelchair. He is unable to stand or walk on his own. But because of specially designed ice skates and a walker with a sling seat provided by Gliding Stars, Bryson can skate. His beaming smile shows the sense of satisfaction that brings.

Accompanying Bryson on the ice is his cousin, 9year-old Ruby Salamone, a fourth-grader at Schlegel Road Elementary School.

 

Ruby, who was adopted from Taiwan by Amanda’s sister in October 2010, came to the ice with her own challenges of adjusting to a new family, a new country and a new language.

The skater-volunteer relationship has been mutually beneficial for Bryson and Ruby. Bryson looks up to his new cousin as a role model, and Ruby gains self-confidence at being able to help her cousin while making new friends, said Amanda.

“Ruby really understands Bryson’s nonverbal cues. When they are on the ice, she monitors his mood to help him feel successful. Having that family connection of his cousin skating with him every week is a big bonus in Bryson’s skating. They really love each other,” said Amanda.

After spending the first 86 days of Bryson’s life in the Neonatal Intensive Care Unit, Amanda knows the ins and outs of what it takes to care for premature babies. When Bryson was released from the NICU, Amanda had to be trained how to change Bryson’s feeding tube, operate a breathing machine and manage his seizures.

Amanda said she remains in close contact with the nurses who cared for Bryson. Now, to make that support come “full circle,” she is studying at Monroe Community College and hopes to work as an NICU nurse to care for premature babies and their parents.

“For those parents now dealing with babies in the NICU who are living through those first days knowing their child has a life-altering disability — I lived that. I know what they are going through, and I want to become a nurse because I can

give them hope,” said Amanda.

November 21, 2011  

Buy Daughter Skis, Feed the Chickadees, Mendon, NY

Ever since my daughter started high school, I don’t see her that much. She doesn’t talk to me that much either. She is either in school, at practice, or up in her room studying, texting or skyping.

So, when she starts talking to me about taking on a new challenge like cross-country skiing, even though it’s a language almost foreign to me, I had better listen.

I tried to downhill ski, once.  It was in California on a weekend away with my husband’s grad school buddies.  Long ago, on a bunny hill somewhere in Lake Tahoe, Calif., I decided that strapping waxed wooden pieces to my feet and then surrenduring my body to the mercy of gravity was simply a horrible idea.

I was better suited for a flatter, more level playing field. So, the next year, I attempted cross-country skiing. I thought, how hard could it be? There are no hills to hurtle down and cause bodily injury. There are no ski lifts to try to jump on. Again, my new husband and I headed to Lake Tahoe for the weekend. It was a perfect, fresh-powdered blue-skied day to take my first five-mile trek on cross-country skis. I could run five miles at a time, so how much harder could skiing it be?

Much harder. Much.

Any ability to get my poles and my arms in rhythm with my feet in my skis completely escaped me. As soon as I would get any momentum going, I’d topple over into the snow. After falling over for about the 72nd time (I’m not exaggerating), I just sat there and wept in frustration. I took off my skis, walked back to the lodge and had a hot chocolate while the others effortlessly glided along the lakeshore.

So, when my daughter came to me with those big blue  eyes sparkling with the promise of a new challenge, I was not going to put my failure on the slopes and the trails on her. But how much was this going to cost us?

We head out to a ski swap and sale at a middle school surrounded by farmland. This is one of the biggest ski swap and sales in the area, and the gym is packed with parents like us shopping from the area’s ski retailers. Thankfully, the high school ski coach is there to teach us the lingo (Classic skis, Combi skis and boots, Poles, Bindings.) and show us what we needed to buy. We need skis that she can use for both disciplines.

No, the two disciplines are not scary downhill and frustrating cross-country, as I thought.  There are actually two disciplines of cross-country: classic and skate.  About 40 minutes, — and hundreds of dollars – later, she had what she needed to hit the trails.

On the way home, we stopped at one of our favorite places to hike, Mendon Ponds Park, where my kids have been hand feeding the chickadees since they were little. It is one thing they still like to do and each time a bird lands in their hand, I get a glimpse into the past, see the little kids my big kids once were.

My daughter brings her poles along for the 2 mile hike, just to get a feel for them. Then, out of nowhere, my daughter wants me to give them a try. I listen to her and slip my thumb in the proper hole, adjust the velcro secure around the rest of my hand. Bend my elbows just so.  And, in one final hike before the snows fall, my daughter and I take turns with the poles along the trail. Together. Side by side.

June 30, 2011  

Wear Your Bicycle Helmet, Damn It!

Yesterday, both my sons were glum and grumpy. They were missing their big sister who had just left for sleep-a-way camp for the entire summer.  My youngest simply missed her because she was his big sister. My oldest, he was just mad because HE wasn’t going to camp the whole summer.

So, to cheer them up, I cleared my day for an activity that would set us soaring and put us all in a good mood. We embarked on an extra long bicycle ride. On their bikes, they had to get along as brothers. They could not cut each other off because they would crash. The older one had to stay with the younger one and remind him about traffic rules like staying to the right of traffic, look out for parked cars, and stopping at stop signs.

Finally, after winding our way through side streets we had discovered in a previous bicycle ride. we made it to Brighton’s Buckland Park.  Finally, I could let my guard down, if just a little, and feel free to let them ride in safety the park’s dirt bike trails that took us through tall bulrushes filled with red-winged blackbirds and over wooden bridges. On the paths, I didn’t have to think about a car coming up from behind them or, well YELL at them to get off their bikes and walk them across the busy intersections.

The other night, as I was drifting to sleep, came on the Late News that a 15-year-old boy had been killed while riding his bicycle. He was not wearing his helmet.The next day, my husband came home from work and let me know that the boy was the son of a man who worked at his office. When you live in a small town, the local news is very local.

Today, I also read about a woman in her 50’s who had just died from injuries she sustained while bicycling. She also was not wearing her bicycle helmet.

But, back to our joyful bicycle ride……

On our way home, I saw a kid of about 13 on his bicycle. We both came to a stop at a 4-way Stop intersection. He said “Hi” and I said “Hi” back.

Yeah, he had left the house with his bike helmet. But somewhere away from his mother’s eye – he took it off and strapped it not to his head but the handlebars of his bike.

Little did he know there are a lot of other mothers out there.

“Put on your helmet.” I said. No pussy-footing around this time, no saying “I’m sorry for being pushy” or “I hope you don’t mind saying..”

I just said it:

“Put on your hemet. A kid your age was just killed this week on his bicycle and HE was not wearing a helmet.”

Maybe another kid would have snickered and flipped me off. But all this kid said was:

“Okay.”

And the helmet went right back on his head.

IF YOU SEE SOMEONE, PARTICULARLY A KID THIS SUMMER WITHOUT A HELMET, BUTT IN AND TELL THEM TO PUT ONE ON!

March 16, 2011  

It’s March Madness … Baby!

My husband is a really big college basketball fan. Make that a Syracuse Orange basketball fan. I can watch a game but I refuse to get so emotionally invested in a team.  And I admire, but I admit feel intimidated by, women who are big sports fans. I cannot understand my husband’s addiction to checking scores and talking stats the same way he cannot understand my addiction to watching news coverage of natural disasters  – or checking my blog stats.   But we have lived with our differences for over 17 years now. And, to prove that love rules above all were married on March 12, smack in the middle of March Madness.

I should have known what I was getting into back when we were dating. I remember going over to his house when he was home from grad school.  It seemed his whole extended family was over to watch a Syracuse basketball game. I was not allowed to talk until the commercial breaks.  I remember going to some Cal basketball games with his grad school buddies when we lived out in California.  Back when Jason Kidd was their Center. He and his friends talked basketball stats the whole way home on the BART. They may as well have been speaking in Chinese, I didn’t understand any of it.

How does my husband want to leave this world? He has told me that when his time comes, and I hope that’s 100 years from now, it will most likely be in his Lazy Boy chair watching Syracuse play UConn in double overtime during the NCAA tournament.

Ever since graduate school, he and his lab buddies, no matter what corner of the country they live in, keep a bracket going this time of year over a small wager. Now, I don’t remember him being concerned about his bracket picks at our wedding. I don’t think he had a small transistor radio in his ear as we stood under the chuppah, or wedding canopy.  And among our vows was one where he vowed that during our Maui honeymoon, he would not stay in our honeymoon suite watching the games. I’m just kidding.

Except one.

His alma mater, the University of Pennsylvania played against Nebraska that year and we watched that one game over Mai Tais by the poolside bar. It was the one game he said he really wanted to watch. Who was I to say no to my new husband’s one sports diversion – no obsession –  on our honeymoon?

Years have gone by and I still don’t share this passion for watching sports. I just don’t understand how he can get so completely riveted in a game that in the scheme of the world will not change his life. Except maybe for the few dollars he will win on his grad school bracket.

But I do enjoy watching my husband watching these games. I will even tolerate him flipping between one of my shows so he can check the score.

To give you an idea of the excessive celebration that goes on around here during March Madness … our first child was born in December.  You do the math.

December 31, 2010  

Welcome to Canada: Did you bring your Skates?

after a skate, a young couple takes in free samples of beer in a Toronto Brewery

This Christmas vacation, my family took a mini getaway to Toronto.  As an alternative to our New York City visits, we love exploring this cosmopolitan city to the North for its great restaurants, theatres, shopping, and museums. Going round and round on an outdoor skating rink in sub-zero (Celsius) temperatures we regret to say was the farthest thing from our minds.

Because our children go to sleep away camp north of Toronto, not only are we having fun getting to know Torontos’ sites but its people.  My daughter spent much of our visit not with us but  with the family of a friend she made from summer camp.  All arrangements were made over Skype through the girls and without one conversation between the adults. All directions were found via GPS. Welcome to long distance friendships in the 21st Century, I guess. 

We dropped Jolie off at her friend’s house and were greeted by the girl’s mother. In the small entryway of the house, we made some awkward chit-chat as the girls settled in for a weekend of catching up and shopping. When we mentioned that we were staying at the Westin Harbour Castle, the mom’s first reaction was:

“They have a lovely ice skating rink just a block from your hotel. Did you bring your skates?”

About a half hour later, the father came home after participating in the traditional Canadian Boxing Day, which is the equivalent to our Black Friday for shopping deals and sales. We were introduced and then his wife went down to the basement to get something from their pantry.

In another awkward introductory chit-chat, the father of my daughter’s friend independently asked us the same question:

“There is this great outdoor ice skating rink near your hotel. Did you bring your skates?”

Now, both my husband and I looked at each other with great amusement. We were struck that Canadians make the assumption that we actually – all of us – owned our own pair of skates. And there was this second assumption that – upon our arrival to this vast cosmopolitan city, the first thing we would want to do was skate.

Another inquiry of our skating habits was made as we were checking out of our hotel. As we waited with our luggage, the bellhop looked at me and my boys and asked me in his French Canadian accent: “Do your boys skate? Do they play ‘ockey?” I had to say no and I asked him why he asked.

He then pointed to a well dressed young man standing in the lobby. “Because, ma’am, that young man plays hockey for the Pittsburgh Penguins. He is only 20 and makes over 2 milion a yaear. So, your boys should liarn to play ‘ockey!”

Now, I am sorry to say that I did not recognize this young man, so this brush with fame was completely wasted on me. And I also appreciated this bellhop’s hope that my young sons held the athletic prowess to be hockey stars, but again he was sorely mistaken. I’m afraid, Canada, that we Americans are just not that into skating.

Or are we? Do you skate? And if so, do you own your own pair?

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