Wednesday, December 31, 2014
I Know People...
Monday, December 22, 2014
Don't Lower The Baskets, Part Deux.
I'm reposting an amended version of my original blog post called Don't Lower The Baskets in order to recognize one of the silent heroes who make "specials" like me feel like we're not so special. This post honors my basketball coach Steve Frantz at the Ambler YMCA.
You see, I've been in the gym shooting baskets a lot lately and it got me to thinking about how much we lower the bar these days. It's easy to expect less of people and be happy when they exceed mediocre expectations. Whatever happened to setting the bar high and stretching ourselves to achieve at our max ability or over it? I always shoot on the regulation basket. That's 10 feet in the air. Literally 6 feet taller than me. I couldn't make it when I first started, but after lots of tries, I make it almost all the time now. I can even hit a few from the real foul line. I'm not bragging but merely trying to make the point that no matter how high the bar, or basket, and no matter how much you think you can't, you usually can if you try. It's even more achievable if you have people around you to coach and teach and encourage you.
One of those people is Coach Steve who treats me like all of the typical kids on the team. I'm actually pretty good, hundreds of hours of practice will do that, but I still have challenges and am still different, and Coach Steve makes sure I'm learning just like the typical kids but he doesn't favor me. Mom and Dad refrain from running onto the court every five minutes to help me, and so does Coach Steve. Because of Coach Steve, I'm learning lots of new things and so are my typical teammates. They are learning tolerance and will be future heroes like Coach Steve. I am learning that I'm not so special, and fit in with everyone else. So thank you Coach Steve and all the other silent heroes who don't lower the baskets for "specials" like me and for anyone else. You make us all better and for that we thank you.
Friday, November 7, 2014
Take a Selflessie
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The first Selflessie?? |
My latest blog post is an everyday hero shoutout to Jason Crompton, an amazing 8 year old from Liverpool, UK as highlighted in a recent article in the Liverpool Echo. He's one of the unsung heroes in the world who care more for others than themselves. In our disgusting world of the narcissistic selfie, these heroes serve an important purpose in the world, hopefully creating some level of balance to to the "look at me" and "what's in it for me" mentality that I see every day. I know many of these selfie-less heroes and am constantly reminded of others that exist in the world. Just read some of my older posts and you will see some great examples...Elliptical Man is a great example. I suggest you read it.
Reading Jason's story made me wonder how a little kid with some serious problems of his own knows to put his issues aside for his dying brother. Then I realized, it's human nature. We're supposed to do this. It just seems like too many people forgot this along the way in their me-centric lives. Just take 5 minutes on Facebook or Twitter and you will see countless posts by people highlighting themselves, or their vacation or even their dinner (seriously people, stop posting pictures of your food. NO ONE CARES). So this got me to thinking and I came up with a wonderful idea that I hope all of my readers and future readers will embrace and maybe it will get some legs like the ALS Ice Bucket Challenge. Here's the deal. Next time you do something good or selfless for someone else, or next time you witness a selfless act, take a picture and share it on social media as a Selflessie. Even if I see one Selflessie for every 50 stupid duck-faced selfies, I will feel like I have restored some balance to the universe. Please share this idea with everyone and let's see if we can make the Selflessie a thing of its own. Now read below and enjoy the full article about Jason as written in the Liverpool Echo.
ECHO Everyday Hero: When brotherly love knows no bounds
An eight-year-old boy is the ECHO’s latest Everyday Hero, after his proud mum revealed the “loving and incredible” care he gives to his terminally ill little brother.
Jason Crompton, 8, has himself suffered from from cerebral palsy and severe learning difficulties since birth and needs help with everyday things, like eating and changing.
But for this special little boy, his condition is no barrier to helping care for his seven-year-old brother Ryan.
Ryan has suffered from brain damage since birth, and “no one loves him more than Jason”, according to mum Victoria.
Victoria, 32, from Stockbridge Village, said: “Jason’s got his own problems and difficulties.
“But he just wants to help Ryan all the time. I don’t know how he does it, he’s absolutely amazing.”
Ryan is in and out of hospital, and always has his special carer by his side.
Victoria said: “He looks after him in hospital and holds his hand. Their love and bond is so special.”
Big-hearted Jason has to face constant worry over his beloved little brother, but somehow finds the time to make sure him mum is OK too.
Victoria said: “He’s always worrying about his brother due to his illness.
“But then he worries about me as well.
“I say to him ‘you don’t need to worry, we’re fine.’ But no matter how much I try he just can’t stop loving and caring for us both.
“He adores his brother and mummy, and we both adore and love him millions and more.”
Victoria, who is bringing up the two boys on her own, says that due to their complex but different neeeds, family life can often be tough.
She added: “It’s hard for Jason because he loves to do sports every day, but he just gets on with as much as he can at home.
“Even though he needs 24/7 care, he’s a lovely, happy-go-lucky little boy.”
Jason’s loving nature hasn’t gone unnoticed at his school, Bluebell Park in Kirkby.
Victoria said: “He’s always getting mentions in assemblies and special awards at school for helping other people.
“The school say he’s ‘out of this world’.
“Just the other day, I was going to change Ryan, and I said to Jason ‘do you just want to wait until I’m done?’
“Before I knew it, he had jumped up, got some wipes and started to undress Ryan. He was saying ‘I’m helping mummy change Ryan!’ He’s just incredible.”
Tuesday, October 14, 2014
Responsibility

I have to admit, that due to my prognosis I am sort of off the hook for being personally responsible. I mean I try with what little I can comprehend of the meaning, but I definitely avoid the truth when Dad asks me if I "accidentally" pooped my pants. I usually just lie that I didn't to avoid all of Dads facial gyrations and complaining when he cleans me up and throws away another formerly fresh pair of Star Wars underwear. Oh well, I am what I am. But there's no excuse for teens like Big Bro and Big Sis. There are way too many teenagers who think that being responsible is something for later on in life when they are adults. Too much alcohol, too many drugs, taking advantage of others, cheating, bullying, not looking out for one another or being honest with people. The list goes on and on. Big Bro was home from college for the first time last weekend and told me all kinds of stories about people he's helped and things he's witnessed where personal responsibility was lacking. He never gives names to protect his friends which is admirable even though mom and dad pry. (Dad way more than mom) The encouraging thing, is that Big Bro and some of his close friends at college appear to be very responsible and look out for their peers which is reassuring. Being responsible isn't always the coolest course of action nor is it usually the easiest which makes it that much harder when you are on your own at school with no guide book other than your own moral compass and that of your friends. So, thanks to all of the responsible young adults who pick up the slack for the irresponsible, and hopefully they rub off on some of their friends who live a little dangerously, and hopefully they have each other's back when they may veer off course in a moment of stupidity. I know Big Bro's not a choir boy, but I know he's safe and I trust him to be smart and look out for people he cares for and even those he doesn't. College sounds like a fun place but also a dangerous one if you are an idiot. I'm glad that all of the freshman I know who started college this year are responsible young adults which I know makes moms and dads of freshman everywhere sleep a little better at night. They should be proud that their kids will be even more responsible adults. Unfortunately, there are still too many irresponsible adults out there too, but that is probably a whole separate blog post...Please share this post with all of your college friends and their parents.
Thursday, September 25, 2014
Sisters

Friday, August 15, 2014
Tomorrow

Tomorrow, I am dropping Big Bro off at college. Tomorrow, Big Bro will begin experiencing life without me there all the time. I know it will not sink in right away, but he's going to miss me. Even though I've made his life somewhat crazy for the last eleven years, he's going to miss me being around. He might miss Mom and Dad and his morning drives to school with Big Sis, but he will miss me the most. Tomorrow, Big Bro will begin a new journey that I have helped to prepare him for. Someday he will thank me for helping him to become the special person he is today. Tomorrow, Mom, Dad and Big Sis might cry (Mom will), but I won't because I won't really understand that Big Bro is leaving to become an adult. Even though I may not cry, I will miss him every time I see his jeep in the driveway and yell "Geegan's home!" (For all of my friends who haven't met me yet, I can't say Stephen, it comes out Geegan.) Tomorrow, Big Bro may be called a freshman who is arriving at AU to expand his horizons which is true, but what AU will soon learn is Sammy's Big Bro is there to expand their horizons too. So, to Big Bro and to all of my friends who will be experiencing their "tomorrows" in the next few weeks, good luck and make a difference so all of our tomorrows are better ones.
Friday, July 25, 2014
Embarrassed??

Monday, June 30, 2014
Not Sel-Fish

Thursday, June 12, 2014
TBT Blog Post

"Hope,
Courage, Faith. Words my family lives by. In June of 2003, my family was
presented with some facts, cold, hard facts, that our yet to be born son,
Sammy, had several rare conditions which would ultimately leave him in a
vegetative state. He would not speak. He would not walk. He would not move. He
would not swallow. He would not see. He would need artificial means for
respiration. He would need tubes in his nose or stomach for food. There was a
possibility he would be stillborn. After many tears, we made the painful
decision to let Sammy be Sammy. We would not hook him up to artificial means of
life support in a cold intensive care unit, we would rather hold him in our
arms every single minute of his short life.
At 6:00 p.m. on July 12, I went into
labor. I put Stephen and Sarah to bed and kissed them goodnight. Two angels
asleep, with no knowledge of the road that lay before me. Half way to the
hospital I discovered that I did not have Sarah’s angel necklace. For some
reason I believed this necklace would give me and Sammy some sort of divine
protection. We turned around and I delicately slipped the necklace off of Sarah
and placed it around my neck. At the hospital, I was put to sleep and Steve was
forced to face the birth of our child alone.
Sammy cried when he was born. He kicked, he screamed. He peed on Steve. He was alive.
I held him close in my arms every single minute we
were in the hospital. In the beginning he was gasping for breath. I felt every
muscle in his little body tense as he tried to inhale. There were times when he
would stop breathing. I would then shake him and say, Sammy, I know you can do
it, take a breath for mommy. Sometimes I had to shake him to keep him alive. I
sang to him to keep myself awake. I had to win this fight. I had to keep him
alive.
As a last resort we took him to the
intensive care unit at CHOP. He was there for one night. They had no hope; they
sent us home with hospice. They expected him to pass away over the weekend. But
he didn’t, he thrived. One week passed and we celebrated his first week’s
birthday. We held him. We sang to him. We played with him. We took him to an
Eagles game. We took him down the shore. We took him to camp. We never lost
hope. And despite the Doctors’ assertions that he could not swallow, we gave
him a bottle.
We quickly got rid of hospice.
Instead of waiting for Sammy to die, we began to look to the future. We
enlisted the help of early intervention and began services at three months. We
decided to maximize Sammy’s potential. He rolled over at five months, started
to crawl at ten months and walked at 20 months. He now says ball, baby and bye
bye.
Despite the overwhelming odds, we
never lost hope. We never lost faith. Sammy has been our inspiration. He
struggled to take his first breath. He struggled to take his first step. Today
he struggles to say his first words. But he never gives up. He has overcome the
odds and he has shown us all that miracles really do happen.
My son Stephen has shown my family
the true meaning of courage. As you all know, Stephen has been diagnosed with a
rare blood disorder called Evans Syndrome. What you don’t know about, is the
courage Stephen has exhibited since he was first diagnosed with this disease. He
has had more IV’s, transfusions, and hospital visits than I care to remember.
He had chemotherapy in the outpatient unit of CHOP for four weeks in a row. We
were surrounded by children with no hair and masks around their little faces to
protect them from the surrounding germs.
Stephen faced each week with a positive
spirit and a level of bravery we didn’t know he possessed. He, and we, did
everything we could to make life as normal as possible in what sometimes felt
like a very dizzying whirlwind. To be honest, we couldn’t have done it without
him. He showed us fearlessness and resolve on the baseball field. Even though
his team didn’t win every game, Coach Dad went home every night feeling like a
winner. Every time we left a teacher conference, where his teacher could not
tell us enough what a smart and mature boy he was, we were strengthened. He has
never let us down through all of this, and we are proud.
And lastly, while speaking about
proud, we cannot forget one little angel. Sarah. Sarah has been the glue that
keeps us together most of the time. Her sensitivity, kindness, sense of humor
and quirkiness has made life more normal for us. She is truly an angel on earth
and we are blessed with her.
As parents, we have experienced a
level of accomplishment with our children that most people only feel when their
children are grown. We have also learned a lot about ourselves and our loved
ones who never missed a beat. We are fortunate in misfortune. We are enjoying
the “lemonade” every day…
The Hope, Courage and Faith bands
have a special meaning to our family. These attributes are represented in all
of our children. We hope that you take a band and find inspiration in these
words and the people around you as we do."
Thursday, May 22, 2014
This I Believe...
This blog post comes courtesy of my Big Bro. He was kind enough to allow me to post something he recently wrote that is highly personal. The essay below was part of a school assignment that will be published on ThisIbelieve.org an international organization engaging people in writing and sharing essays describing the core values that guide their daily lives.
You Are Going to Die, So Be Happy
Stephen Cammarota
It may sound morbid, but people have an expiration date. Sometimes people don’t even get a chance to make it that long. Car crashes, sickness, acts of god, all of these things have the potential to snuff out the light of life. I don’t dwell on this reality, I merely acknowledge it. Accepting mortality allows for a more fulfilling life. You are going to die, so be happy.
Last year it was very likely that I had lymphoma. Various preceding medical complications, including a blood disorder and an immune deficiency, as well as two courses of early age chemotherapy had most likely mutated my cells into cancer cells. The outlook was grim, all of the tests came back positive. When I was first made aware of this, I did not know how to feel. I didn’t cry, I wasn’t angry, I was just puzzled. I thought, “young people don’t get cancer”. Sure I have some other serious medical problems, but not anything as serious as cancer”. The enormity of the situation was very real and I understood it, but I just couldn’t bring myself to feel anything. The full effect of this news came crashing down on me about a week later. I would have panic attacks, and be unable to function. I finally knew damn well what emotion I was feeling, and it was fear. If things kept on going the way they were I was going to die from panic long before the cancer got to me. Thats when I made the conscious decision to accept the fact that I might die, and it might happen sooner rather than later. It was liberating.
Allowing the possibility of death into my life allowed me to move past my fear. I started focusing more on the time I thought I had left, making the moments count and not focusing on the petty trivial pursuits that had governed a large part of my life. Gone were my worries about the quiz I failed and if my hair looked okay that day (It did). I devoted more time to family and the things I liked to do. This was not denial, this was freedom. I realized that I might die, and this made me appreciate what time I had, and how much my friends and family cared. I was feeling better than I had in a long time. The news came that this wasn’t cancer, just a flare up of a pre-existing condition. The response my father received from me after relaying the information was “Thats cool”. Needless to say, he was surprised.
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Mom gets it... |
Friday, May 2, 2014
The "C" Word
One word that should never be used: the "c" word

There are so many people who tell themselves they can't do things. You've heard them. "I can't imagine what it would be like to be in your shoes", "I could never handle being diagnosed with that", "I'm not smart enough", "I'm not strong enough" and so on and so forth. But guess what. You can. My parents did. My Big Bro did" People can and they do. So let's not talk about what you can't do. Dream big and shoot for the stars, and the rest will follow.
Friday, April 18, 2014
More Frogs less Richards

Friday, April 11, 2014
Slightly Different
It may sound strange, but sometimes I prefer being as drastically different as I am. Once people meet me, they know I have some serious issues and they are immediately nice to me. They would never tease me or make fun of me. Even the "typical" kids I've known from kindergarten through 4th grade have been nice and have never teased or bullied me. Lots of my "atypical" brethren experience the same treatment, whether they have abby normal brains like mine, or they have visible physical limitations. The more messed up you are, the more likely you won't be teased or bullied. Even the bullies steer clear. Obviously there are still a few cowards who poke fun of handicapped people behind their backs or behind closed doors, but I have yet to see someone do it directly. So while my friends and I are safe from the majority of bullies, I feel deeply for the kids, and adults, out there who are "slightly different". They are "normal" compared to me, but they may be smaller, or act differently, or have something about them that makes them slightly different from the majority of "perfect" people around them. These are the poor souls who are fair game for the bullies. Like the poor boy near Pittsburgh this week who finally snapped in such a severe way from the stress of being slightly different and the effect of the teasing of the perfect kids. He was slightly different and his life has been ruined by the bullies.
Now, I know many many kids like Big Bro, Big Sis and all of their teenage friends who would never tease someone different in order to make themselves fit in more with the cool kids. I guess that's because they are not insecure and they have the right people in their lives making them feel good about themselves and teaching them to help others to make yourself feel better, rather than demeaning others. My dad says bullies are the product of bad parents and they are to blame. I think he's right for the most part, but I also think that if I saw a schoolmate being bullied, I would help to stop it. So, I wonder why so many kids, teachers and parents don't step in to stop bullying when they see it. It's not really that hard to notice. I don't think we can ever fix the bad parenting. It reminds me of a quote from the movie Parenthood where Tod with one D, states "You know, Mrs. Buckman, you need a license to buy a dog, to drive a car - hell you even need a license to catch a fish. But they'll let any (insert bad adjective followed by bad noun) be a father" Tod is right, bully-makers will continue to do their poor job at parenting, unleashing the jerks of the world upon us, but we don't have to accept that. I beg of every kid, teacher, coach and parent to pay attention and step in when they see a bully or when they see someone teasing. Don't yell at them, but talk to them. Tell them how that makes people feel. Tell them they don't need to belittle someone else to make themselves more secure. Give them what their parents are not, and you might just save their life and the life of someone who is slightly different.
Sunday, April 6, 2014
Great Expectations

Sunday, March 30, 2014
Sink or Swim

I competed in an ability swim meet yesterday with lots of other kids like me and it made me think of how fortunate we all are to have parents who encourage us to get out there and do as many things as we can. Even things everyone thinks we can't do. Too many parents are over-protective, even those of typical kids. It's fine to look out for us, but sometimes you just have to throw us in the pool, or push us down the hill, or whatever adventure pushes us beyond our limits. I was born with a pretty messed up brain which was supposed to make me incapable of doing almost anything. My parents ignored that and just included me in everything they did. If they hadn't, I don't think I would be swimming or skiing or doing any of the cool things I do. Not everyone is as lucky as me, but everyone has the ability to do something, you just have to try, or be pushed to try.
Friday, March 14, 2014
The Elliptical Man
Sounds like an Arnold Schwarzenegger film doesn't it? The title of my blog today refers to a recent facebook post by my friend Cait Waxler who runs the Ability program at the Ambler YMCA. Read it here and share it and encourage some folks to donate to the Y on behalf of Cait so she can continue running great programs for kids like me. I'm selfish that way.

Sunday, March 2, 2014
True Grit...
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I'm tougher than you big-guy!! |
No, I'm not talking about the John Wayne movie. BTW, did you know that John Wayne's real name was Marion and that he could have fought in WWII with some real tough guys, but chose to make movies instead. Well, if it's any consolation to fans of the Duke, he did his own stunts....meaning he rode his own horse and fell on an air mattress once and a while. This blog post isn't to attack old dookie pants, but to highlight something I have noticed about toughness. Seems like we admire all of the wrong tough guys and never recognize true toughness. See Ray Rice...I'm sure his wife posed a real threat before he knocked her out. Or the Blade Runner, oh how I wanted him to be my hero. I can point to lots of other guys like Ray and Oscar, but you get the point. Toughness isn't about how many yards you can rush for or how many movies you can make about tough guys. I see real tough guys every day. (note, by "tough guys" I also mean all the tough ladies I know) Toughness is being responsible. Toughness is the kid who goes to school every day even though the other kids pick on him. Toughness is the student who stands up for the kid getting bullied. Toughness is being honest. Toughness is the sister who doesn't get embarrassed of her handicapped little brother. Toughness is the single mom who works hard and raises her kids not to be buttheads. Toughness is the couple who help a child in need when they don't have one of their own. Toughness is speaking your mind when your opinion is not popular. Toughness is the kid with cerebral palsy who struggles with every step and still keeps a smile on his face. Toughness is the parent who keeps a positive attitude while slowly watching a child who is going to die. Toughness is the teen who still tells his parents he loves them...in public. I can go on and on. True Grit is around us every day even though we continue to praise the wrong tough guys all the time. Look around you, and you will be amazed at all the tough people around you who go un-praised every day. Got it...Pilgrim :-)
Sunday, February 23, 2014
Siblings Sleep Late....
I've been up for 4 hours on Sunday, and my siblings are
still sleeping. I think it's because I wear them out. They very reluctantly
tagged along yesterday for a day trip to Philly to get me out of the house and
to take a tourist bus ride through the city of brotherly love. Yup, even though
we live here, we
acted like out of towners. As you can tell from Big Bro's face
in the picture, they weren't too happy. At least no one they know saw them and knows they were riding the open top bus through town like tourist nerds.... Not until now that is. This got me to
thinking about my great siblings and all of the other siblings out there who
are lucky enough to have a "special" brother or sister. I mean,
brothers and sisters are great to have if your "special" or not, but
siblings of special needs kids like me are a little different. They may
complain a lot, but they do things that many kids their age never imagine. They
deal with some stresses that adults would be challenged with, and all the
while, they continue to impress and succeed and overachieve. My Big Bro got
accepted to American University this week, his "first choice"
college. He was also accepted to every other college he applied to and received
scholarships and invitations to special honors programs along the way. I am
proud because I know I played a part in his success. I helped make him who he
is. My Big Sis is the same way. Quietly overachieving throughout the chaos of
our family. She won a prestigious American Legion Award when she graduated
middle school. The award is given to one boy and one girl from the class for
their strong demonstration of character and good citizenship. Those who receive
a medal must exemplify six qualities that define character: courage, honor, leadership,
patriotism, scholarship and service. I know that with my little messed up
brain, I couldn't help her with patriotism or scholarship, but I definitely
helped her with courage, honor, leadership and service. Siblings of kids like me should be noticed more for all of the unwanted stuff they need to put up with and for all of the caregiving they need to give to someone who can be quite difficult at times. These are the people that this world needs to be its future leaders and thinkers. So, to all the siblings of special needs kids out there, I applaud you even though you don't seek applause. Please share my blog with anyone who deserves a little applause, and next time you see a family out and about with a special needs kid, give their brothers and sisters a thumbs-up, they'll know what it means.
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