In the Presence of Greatness

I am ordering a 5 x 7 print of this photo as I write, and later today I will embark on a quest for a frame worthy.

And this photograph will sit on my desk now and forever–and not because we’re wearing dry-clean-only attire but because we are standing next to true modern-day heroes, a couple who inspires me in ways my weak words will never be able to fully articulate.

When I need an ear, Richard and Deb Siravo are there.

When I need to be brought back down to earth, they help me along.

When I am angry (and, yes, sometimes I am), they have the rare gift of being supportive yet simultaneously calming.

They have taken tragedy and turned it into healing–and not just for themselves but for all.

They don’t complain; they celebrate.

They teach what they know and what the rest of the world so desperately needs to know.

And they remind me who I need to be as we navigate these waters.

Our son’s epilepsy is a journey, and these are our guides.

And I know we are in good hands.

Ponies As Partners

Our son Edgar met Sabina Silvia and her (and his soon-to-be) beloved horse Indy when he was just three years old.  Since then he has been visiting her Third Beach Road farm as often as possible.  When others might have questioned his attention span, Sabina praised his work ethic; when other environments proved challenging, the ring was an oasis of calm.  It was clear this was where Edgar belonged–and his love of horses and Sabina has never waned.  The transformative power of his relationship with Sabina and Indy is truly a thing of beauty and beyond compare. 

Below Sabina shares with readers what it is she does and the details of an upcoming–and very important–fundraiser.  I am sharing this with you–and asking you to share with others (specifically those who live on Aquidneck Island and nearby)–because I believe in and can speak to the magic that exists between children and horses. 

Please enjoy this interview with Sabina and mark your calendars for Thursday, February 23, 2012.  Then, share this interview on Facebook or through email or some other way with folks who may be able to attend.  Leave a comment here on this post and let me know you shared the interview and how.  Each comment will enter you in a drawing to win a one-hour visit to Sabina’s Middletown, Rhode Island, farm to visit with, groom, and ride the horses–a gift to use for yourself or to share with someone you love. 

Comments will be open through Wednesday, February 22, 2012, 11:59 PM EST. 

SH: Tell us a little bit about yourself and what inspired you to begin Ponies as Partners.

SS:  My name is Sabina Silvia, and I am the Director of  Ponies As Partners Therapeutic Riding Inc. I am 48 years old and have been  involved with horses since I was 12 years old. We got involved with horses as a family when we ran across a little Shetland pony named “Fireball” who was not being cared for properly. We bought her and nursed her back to health, and I  guess from that point on I always had a soft spot for the “underdog”! I was  fortunate enough to spend my teenage years riding, horse-showing, and  participating in 4-H and Pony Club.  Our budget was tight, but my mom somehow made it work. We were taught the values of hard work, responsibility, and not giving  up. I never had the most expensive horse, but I worked hard with the one I did  have; and through perseverance, I still had an incredibly successful show career. I graduated from Johnson & Wales College in 1983 with a degree in Equine Sciences, majoring in Instruction and minoring in Barn Management. I  then went on to earn a degree in Accounting from Rhode Island College. After working in banking for almost 20 years, I had the dubious distinction of being one of a handful of women to be pregnant and at the same time be diagnosed with ovarian cancer. Aggressive treatment was started immediately; and although trying, our son Andrew was born healthy in 2003. My horses, along with my family, really gave me the needed strength to carry on with this seemingly impossible challenge. At that time, my husband and I started to rethink our life path. Did I really want to spend the rest of my working life in a cubicle? Did we really want our son brought up in a day care center? Quality of life won out over a secure paycheck, vacations, and all the other things that go along  with corporate America. We purchased Ponies To Go Farm in September 2005, and in January 2006 Ponies As Partners was launched. Our goal, as an organization, is to reach out and share our horses and ponies with as many children and adults as  possible. The horses have a unique ability to motivate people and inspire them to do their best.  Their trusting nature can result in astounding progress with clients who resist other forms of therapy. As I said before, I have a soft spot  for the underdog, and my heart just melts each and every time I see one of our visitors make strides that seemed impossible not too long before. It never gets  old!

SH: What should readers know about Ponies As Partners?

SS: I think readers should know that Ponies As Partners is not a one-size-fits-all program. Every time I get a call regarding a potential new client, I always start from scratch.  I have yet to meet two clients who end up with exactly the same lesson plan.  I work with older and younger clients, people with physical and emotional challenges, ADD, autism, social anxiety, Down’s Syndrome, some who come from abusive homes, some who have learning disabilities–the list is limitless. I always develop an individual plan for each person who visits our farm. Some clients benefit from riding only, some like to ride and groom, and some would prefer not to ride but just be around the animals.  I always ask what the client hopes to gain by coming to Ponies As Partners.  What do their parents/caregivers hope to gain? Physicians also have an opportunity to provide input when we are deciding how best to proceed. Many times we will develop a plan that will incorporate physical exercises such as steering, stopping, walking, and trotting, to improve physical condition.  Or for clients struggling with attention challenges, we may work on sequences of tasks while on horseback or even steps in getting a horse ready to ride. You need to be creative in determining how to provide the client with a fun, enjoyable experience, yet at the same time make progress with their challenges and produce positive results. I love that challenge!  Communication is the key. Being a  small organization that can give individual attention to each client is one of my favorite aspects of Ponies As Partners. I don’t want that to ever change.

SH:  What are the details of your upcoming fundraiser?

SS: Ponies As Partners is holding a fundraiser event during Newport Winter Festival week on Thursday, February 23, 2012, at Island Cinema in Middletown, Rhode Island (directly behind Home Depot). A dessert reception featuring a  decadent chocolate fountain with a variety of dipping items, along with many other sweet treat selections, will be offered from 5 – 6:30 pm. During the dessert reception, raffle tickets will be sold for our fabulous “Pick Your Prize!” Raffle. At 6:30, the movie “Buck” will be screened. “Buck” is an amazing  film, winner of the 2011 Sundance Film Festival Audience Choice Award.  Details on the film can be found at  www.buckthefilm.com    After the  movie, we will raffle off our prizes, generously donated by many area merchants and individuals. The dessert reception and movie price is $20.00 (adults) and $15.00 (children 12 and under). Discounts are available for Winter Festival  Button-holders. And you can find more details at www.poniesaspartners.org   We  would love to see you there!

SH: Why is it so important for folks to support this cause?

SS: Supporting this cause is important for many reasons. We  provide a valuable service to our community’s most vulnerable citizens. The success they experience at our farm, taking charge of an animal that far exceeds their own weight and bulk–being able to learn skills that will enable, for example, a differently abled client to find a meaningful and productive way to live his or her life; giving an abused child a voice and  teaching that child that they do have value, that someone appreciates them, that they are  important; developing a good work ethic, along with a “can do” attitude–this is all just a part of what we offer through Ponies as Partners. Another excellent reason to support our cause is that we operate on a volunteer-only basis. All donations go toward funding programs that are offered at low- or no-cost. Our fees are far below what is typically charged for equine activities. You can be sure that your support goes to providing valuable services and programs.

SH: In closing, please describe the magnitude of the therapeutic relationship that can exist between horses and  humans, and specifically children with special needs.

SS:  The human/equine bond that exists in the therapeutic setting is one that is tough to describe or explain. How is it that a 1,200-pound animal that dragged me out to the field this morning has just allowed a 50-pound physically challenged child to lead him into the ring, get on his back, and gently and calmly execute each and every command given to him by his vulnerable and even intimidated rider? With nary a break in his stride or a misstep in any direction, I never cease to be amazed at how this horse knows he has a very special passenger and that he must take special care not to take advantage of any uncertainty.  I see this day after day, and I am in awe of it.  It is as if the horse knows he is being entrusted with a special mission and that we count on him to deliver.  My horses and ponies almost seem to know  they are participating in a very special process; and the look of happiness and accomplishment evident on a rider’s face after they are finished is a look I am happy to see 24/7!    

Food for the Soul

He may stand at a mere 36 inches and have been on the planet for just two-and-a-half years, but tonight August showed a capacity for empathy that belies his small stature and decided youth.

Surrounded by several EMTs and cradled in my arms, Edgar was working hard to recover from a grand mal seizure.  August stood and watched and asked questions.  He knew Edgar wasn’t feeling well.  He looked perplexed.

He exited and headed to the kitchen, picked up the detritus that was his pancake, and marched back to Edgar.

He broke off a piece and placed it gently in Edgar’s mouth.  The EMT joked that August should check to make sure all his fingers were still there.

But August just smiled.

He was proud that he had fed his brother, that he made his brother happy.

And if you think he was proud and happy, well, just imagine how I felt.

Well done, August.  Well done.

No Joke

As of this writing, at least 115 people “like” this on Facebook.

Another 106 thought it clever enough to “share” on their walls.

Adjectives used to describe this purported witticism include “cute,” “hilarious,” “hysterical,” and “cool.”

And, apparently, it made some people “LOL.”

And at the risk of calling even more attention to it, I present it to you.

But, rest assured, I won’t be dignifying it.

Is it a piece of drivel?  Yes.

Is it cute, hilarious, hysterical, or cool?  Of course not.

Is it worth the time I’m going to take to write about it?  More than I can possibly articulate.

As the mother of three children by adoption, I am understandably interested in how adoption is portrayed in the media and in popular culture.  I have to be.  Nothing less than my children’s self-worth is at stake.

In our family, we celebrate adoption.  It is seen as a miracle.  The idea of ever using adoption as a way to insult another human being doesn’t even enter our collective consciousness.

Historically, however, adoption has been used as a gag, as the butt of a joke, as a way to torture a sibling or explain why someone is different from the rest of his or her family.

But why?

Why would someone be driven to tears upon learning he or she was adopted?  Worse, why would someone think, of all the available insults in the arsenal that is the English language, that telling someone they’re adopted is how they’re really going to get under someone’s skin?

The idea behind it, I think, has to do with inverting a person’s concept of who they are, who they believe they are.  But this interpretation requires analysis–and effort; and, sadly, a quick picture on Facebook that elicits 100-plus comments over a day or two isn’t inviting any kind of deep thought.  The surface message, the one that proliferates and sticks, is that there is something wrong with adoption and something powerful in the insult of telling a person they were.

As long as these messages persist and the people with whom my sons will come in contact every day feel compelled to comment and share, we have work to do.

And that, like the picture you see here, is no joke.

He Knows

I asked him how he was feeling as I held him last night.

I asked him how he was feeling about his epilepsy, about the seizures, about the medicine.

And he said, “It’s hard, Mommy.”

I told him I would be there for him, that I would never leave his side.  Ever.

And he said softly, “I know.”

And the fact that he knows gave me the strength I needed to fight along his side for another day.

He’s My Brother

He knows the meaning of and can pronounce “idiopathic.”  He can differentiate between a grand mal and an absence seizure and delineate the characteristics of each.  And he will be the first one to tell you exactly what epilepsy is (“a little problem with the electricity in your brain”) and is not (“a sickness”).

He’s seven years old and quite possibly the best big brother on the planet.

Yesterday he discovered his brother having a seizure, knew exactly what he had to do, and explained to the five-year-old onlookers why they should not be laughing.  This morning he perceived an aura before either one of his parents–though we were all in the room together–and warned us of what he was sure was an impending seizure.  (It was.)

Tonight he asked if his brother would ever be able to get his driver’s license and assured me that should Edgar not be able to drive, he would take him where he needed to go.

He told me he worries and that he’ll always look out for him.

And I looked into those big brown eyes and wondered who he is, how we got so lucky, and is this too much.

So I asked him.  “Oscar, do you ever feel as though this is too much?”

And his reply?

“It’s not ‘too much.’  It’s life.  And it’s going to be okay.”

And I believe him.  Because it’s him.

The Matty Fund

Dear Readers,

I am honored to present to you the following interview with The Matty Fund’s Richard Siravo.  The Matty Fund has been an invaluable source of support to our family since our son’s diagnosis of epilepsy 12 weeks ago.

Please leave a comment here on this post and Pier Cleaners, a locally owned and operated and environmentally responsible business in Wakefield, Rhode Island, will donate $1 to The Matty Fund–up to $200.

Once you leave your comment, please share this interview on Facebook, through Twitter, email, or your own blog and encourage your friends and family to leave comments, too.  We won’t stop until we reach 200 comments–because every comment and every dollar goes directly to helping families affected by epilepsy.

Thank you!

Samantha

P. S. Please “Like” The Matty Fund’s page on Facebook!

Richard Siravo has been happily married to Deb Siravo for 25 years and is the  proud father of “His Four Sons”–Joseph, Stephen, Christopher, and Matthew.  He was born and raised in Providence in a loving, caring, and giving family and attended Catholic schools as a child.  He was taught at a young age to give back to society by his parents and teachers.  Throughout his life, he encountered many coaches and mentors who gave their time to help and inspire others, including him.  After graduating from the University of Rhode Island, getting married, and starting a family, he felt the time was ripe to volunteer his time.  He began coaching youth soccer, a sport he never played.  He volunteered on the local soccer board and later the State soccer board.  He also coached youth basketball and youth wrestling.  He wanted to inspire his own sons and other young children in the manner that inspired him.  When his youngest son, Matthew, was born and later diagnosed with epilepsy, he continued to coach and serve on the State soccer board.  As young Matty entered preschool, he would transport him daily and often attend speech and therapy sessions, observing his growth and many challenges.   On Mother’s Day in 2003, Matthew died unexpectedly at Boston Children’s Hospital due to a prolonged seizure.  Undoubtedly, the single most devastating experience a parent and family can endure, his family’s life was in turmoil.  Shortly thereafter, he relinquished his business, and his wife eventually left her career as a veteran school teacher.  They wanted to help families struggling with the overwhelming effects of epilepsy.  They formed The Matty Fund, a non-profit organization, in honor of Matty, out of the basement of their home and eventually opened Rhode Island’s only Epilepsy Resource Center.  Today, they have distributed over 20,000 copies of their authored, My Friend Matty books in English and Spanish, created Camp Matty, hosted monthly support group meetings, workshops and lectures, awarded college scholarships and research grants, and have traveled throughout the country raising awareness by speaking about epilepsy and The Matty Fund. 

SH: Please describe the work of The Matty Fund and the types of services you offer to families who have been touched by epilepsy. 

RS:  The Matty Fund provides a wide range of services to families touched by epilepsy.  We have created Rhode Island’s only Epilepsy Resource Support Center (401-789-7330) with a caring, competent, and knowledgeable staff.  We begin with an initial intake questionnaire to determine the individual’s greatest needs.  We provide family resources and educational support.  We provide workshops on various topics such as transitioning, the Ketogenic Diet, hope, and inspiration.  We host support groups for adolescent girls and a monthly support group meeting for families called Discovering My Epilepsy.  We connect families, and they become part of The Matty Fund family.

SH:  All services you offer to families are absolutely free.  Can you describe how The Matty Fund is able to do this?

RS: We have been able to offer services to families affected by epilepsy through grant-writing, fundraising events, and individual donations.  Our fundraising efforts have been successful through the efforts of many enthusiastic volunteers, our individual and corporate donors, and our Matty Fund families inspiring others to participate in our events.  Our Snow Angel Ball is our formal event for adults with food, entertainment, live and silent auctions.  We also have our Matty Hatty Day in schools throughout the region, which raises epilepsy awareness and is coupled with a pledge envelope.   The Matty 5K Run/Walk for Epilepsy is a family event for all ages complete with a kid’s dash, awards, prizes and a barbecue.  Our annual Matty’s Golf for Epilepsy has been a tremendous success and a sellout each year, bringing families and donors together.  We also have individual and outside fundraising contributors which support our efforts, including Rhody’s Got Talent  Show at the University of Rhode Island each November and the Rock-N-Jock Concert held in August. 

SH:  The Snow Angel Ball is coming up shortly.  How does this fundraiser differ from some of the other fundraisers you have throughout the year? 

RS: The Snow Angel Ball is our signature event.  It is an opportunity for the Matty Fund families to get dressed, dance, have fun, and enjoy the company of a loved one.  It’s an evening to be with friends, meet new friends, and raise money for epilepsy.  The night includes entertainment by the Malloi Band, complimentary Grey Goose martinis, shrimp, oysters, a photo booth, dinner and tons of silent and live auctions–with prizes ranging from getaway packages to exotic destinations to fine jewelry and sports memorabilia.  It’s truly a fantastic and amazing evening. 

SH: What have you learned–about yourself, about others–since The Matty Fund’s founding?

RS: The Matty Fund has allowed my wife and me to memorialize the loss of Matty, while extending hope, encouragement, and compassion for folks living with the challenges of epilepsy on a daily basis.  It has enabled us to grieve in a positive manner.  We have been able to travel an unpaved path, in honor of our son, a five-year-old boy, and help so many families from coast to coast and within our region.  The Matty Fund has shaped who I am, and I am utterly proud to help families, knowing that it is in honor of Matty. 

SH:  What is it you wished everyone knew about epilepsy and the families it affects?

RS: My wish is for people to learn what epilepsy is–abnormal misfiring of the neurons in the brain.  It is a medical condition that with aid of neuroscience and perseverance may be controlled by medicine.  And in some cases, children outgrow epilepsy.  Epilepsy doesn’t determine the individual; rather it is a component of the individual. Additionally, epilepsy affects the entire family.  It affects the parents, the siblings, the grandparents, and, of course, the child.  Many times family and friends feel helpless. It is a condition that we have no control over nor do we know when the next seizure may occur.  One way to help support families is to come out to our Snow Angel Ball and make a difference in the life of a child with epilepsy. 

Dear Epilepsy

Dear Epilepsy,

This letter may be long overdue.  Perhaps I should have penned it twelve weeks ago when you first paid a visit to my sweet, gentle blue-eyed boy.  But I wouldn’t have known what to say 12 weeks ago.  You caught me off-guard.  Three months later, I still feel as though I am at a loss, but there are nonetheless a few things I’d like to say.

According to my son’s neurologist, she’s having a difficult time catching you.  She called you “elusive” and said that you’re progressing.  I am not entirely sure why you need to be, to do either, why you continue to wreak havoc with my son’s tiny body, why you have even come in the first place.

Because of you, a six-year-old boy has to take medicine, a lot of medicine, every day–and it seems as though it’s more and more all the time.  His hair is thinning because of it, because of you.

You have visited many–Edgar is surely not your first and won’t be your last.  And while I have tried to be patient, tried to be understanding, I am not happy with you.

This morning–despite all the valiant attempts by very intelligent, very competent experts to keep the seizures away–you stopped us all in our tracks once again. 

Every time our son has  a seizure he is at risk–not just for his physical safety at the moment but in terms of the health of his brain.  And, you know, he only gets one brain.  I want to protect it, to keep it safe.

But you’re not letting me.  You fight me.  You fight him.  Every time we make a move, you make a counter-move.  And for the moment, it appears you’re winning.

However, at the risk of incurring your wrath even more than we have thus far, I will tell you that we will fight–tirelessly, undauntedly, and until we win.  Because you, epilepsy, will not define our son.  He may have to keep company with you for the time being–or for the rest of his life–but that is all. 

THAT is all.

Sincerely,

Samantha

Silencing the Critics

An article in the most recent issue of Parents magazine caught my attention.  And, no, it’s not because of its title: “The Naked Truth.”  Actually, it was more for its subtitle: “Now that I’m a mom, I’ve got nothing to hide.” 

Through the years, a number of articles in Parents have “caught my attention,” but none has inspired me to write.  Truth be told, Parents, as a publication, doesn’t lean particularly close to controversy.  At its best it’s informative; mostly it’s pleasant, easy reading.

“The Naked Truth” by Rebekah Hunter Scott delineates the miraculous disappearance of one’s ego when one becomes a parent.  And as a parent whose own ego left the building sometime in August 2004, I find reflections on this topic enjoyable if not affirming. 

Scott writes that her days of “crippling modesty” are over now that she has children.  Any mother who has ever held a squirmy, hungry, tired toddler and has had said toddler pull her shirt all but off in the middle of Dunkin’ Donuts knows of what she speaks.

But there is a passage in her essay that gives me pause–serious pause. 

Scott writes about her young son, “Having a mini critic as my shadow has toughened me up a bit, thickened my skin. Let’s face it, kids are brutally honest. Especially mine. Rollie constantly points out my imperfections. Your bottom is big, Momma. (Time to go jogging.) Why are your feet so cracky? (Must loofah.) Your breath smells yucky. (Anyone have a Tic Tac?) If someone had even hinted at such things pre-kid, I would have been so mortified I would have balled up armadillo-style and rolled into a hole for months. But that’s the beauty of having kids: I am no longer capable of embarrassment.”

While kids do “toughen us up,” are “brutally honest,” and help us to be “no longer capable of embarrassment,” I can’t help but think of a son who “constantly points out [his mother's] imperfections” and where that leads. 

As the mother of three sons–and three future men–I am rather adamant that unless they have something positive to say about someone’s personal appearance, then they are to say nothing.  And that starts with their mother and father.  

Of course, as young children, they have been unwittingly and occasionally deliberately critical of or curious about another person’s body, face, clothing, or hair.  When that happens, they are reminded of how such comments are unnecessary at best and incredibly hurtful at worst. 

As a woman, too, I find it more than a little disconcerting that a male–”mini” though he is termed–can tell his mother her “bottom is big” and that this sends her flying out the door to go jogging.   We would not tolerate this from adult males.  Why should it be tolerated–or treated lightheartedly–when the criticism comes from a child?

Naturally, this article is meant to be humorous, to entertain, and may not even be meant to be taken literally.  That aside, I think I’ll keep doing what I”m doing. 

When my oldest son lapses into criticism of another person’s appearance, I simply look at him; and his reply to my stare tells me he gets it:  ”I know, I know, I’m not supposed to say anything negative, right?”

Quite right.

 

A Resolution I Can Keep

Image courtesy of Google Images

‘Tis the season to reflect on what’s working and what’s not working in our lives and make a solemn vow starting on January 1st that everything is going to be better from now on. 

It’s noble.  It’s lofty.  And, for me, it has been a largely unrealistic if not futile endeavor. 

The top new year’s resolutions tend to fall into several categories:  (1) Take better care of our bodies (eat more healthfully, stop smoking, cut down on drinking, exercise more, deal with stress effectively; (2) Take better care of our minds (go back to school, read more); (3) Take better care of our souls (spend more time with friends and family and less time in front of the computer or at work); and (4) Take better care of our planet (recycle more, buy organic, go “green”).

As I peruse this list, I see that there is plenty of room for improvement in my life.  Without delineating my myriad frailties, shortcomings, and bad habits, suffice it to say, I could stand to institute many of these.

But I won’t.  I can say that honestly and without embarrassment. 

Since becoming a parent, I have learned–more than at any other juncture in my life–that I, like all of us, am a work in progress.  I am constantly changing and (I hope!) evolving; but any changes for the better I have made in my life have stuck only when they have arisen organically–not due to a mere change in the calendar. 

So my resolutions for 2012 are as follows: To remain open to the possibility that my way is not the only way, to treat others and myself with great care, to admit when I’ve been wrong and to make amends accordingly, to breathe. 

In other words, to continue doing the very best I can. 

Happy New Year to you.