Get A Grip

Over this past weekend I took a trip to the city with Mom and Dad to see the car show when something struck me. No, not a car. What struck me was how much Mom and Dad hold my hand. Especially Dad. He held it almost the whole day even though I am 14 and know not to walk into traffic or wander off. It doesn't bother me, being 14 and holding Mom or Dad's hand, but one of Dad's patented "stranger interactions" that day got me to thinking. It wasn't the first interaction where a lost older woman asked Dad where Wills Eye Hospital was and he proceeded to tell her to go down two blocks and make a left and you will see it on your right. Immediately following up as only he does by asking her if she could actually see, because if she couldn't she'd have a problem. She gave him an odd look and then laughed realizing it was his unfiltered sense of humor. No, it was the second stranger interaction we had in the overly crowded Reading Terminal Market. We were at one of the busy intersections surrounded by cases of meats, people eating sandwiches and rows of produce and cookies. If you've never been there, imagine a 4 way intersection of criss-crossing tourists with not much room to navigate. It was smack dab in the middle of one of these intersections that Dad, holding my hand of course, was approached by a woman with a small mob of her children or grandchildren in tow all swarming around her as she stopped to get Dad's attention. Dad stopped, of course. She apologized for being so forward but sheepishly asked if I had "microcephalia", that was her word. Dad nodded in confirmation, but I could tell he was already pondering jokes about "microcephalia", the land where all microcephalics come from. Like the land of misfit toys. Anyhow, her inquiry was due to the fact that her nephew had "microcephalia" and she could tell I had it from.....my eyebrows. She remarked that her nephew had the same perfect eyebrows and how women would kill to not have to pluck their eyebrows to get such perfect ones, all the while nodding at Mom knowing she would get the whole eyebrow thing. Well it wasn't finding out that I had perfect women's eyebrows that got me to thinking about holding Dad's hand, rather it was when she said her nephew was in his late 30's that shook me. I forgot all about the bustle of bodies and her swarming brood surrounding us. All I could think of was being 30-something and still holding Dad's hand and that's when it hit me. Mom and Dad don't hold my hand so much for my benefit, but rather for theirs. I'm sure they wish they could hold Big Bro's or Big Sis' hand too, or just be as close to them as they are to me forever. But that's not how things work. I am sure lots of parents wish they could "hold hands" with their children forever, but unlike the children from "microcephalia" they aren't so lucky.  So cherish any amount of hand holding your children, or anyone for that matter, will allow you to have because you never know when you won't have any hands to hold. And PS. The only reason I have eyebrows (plural) is because Dad shaves the middle of my unibrow. 

THE MEEK, THE EARTH, AND LEARNING FROM THE DISABLED

It’s been quite a while since I’ve shared my thoughts via this blog and I apologize to any fans who miss me. Quite a few have asked me to pick up where I left off because they need a lift, but I’ve been reluctant since my “ghost writer” has had a bad year and is a little grumpy. I feared he would not share my views without hijacking my persona to advance his agenda. He has assured me he won’t. So now, a time with hardly any controversy and upheaval ;-) seems like a sane time to jump back into the mix. I will do my best to be an objective force to give some non-partisan lifts to those who care to listen.

In my short 13 years, I have never seen a more contentious, polarized and hateful state of affairs. People only hear what they want to hear all without listening. It’s as if we’ve started to apply the concept of free market capitalism to ideas and beliefs where it’s survival of the only the fittest ideas and only the beliefs of the winner is absolute. If it’s not your belief, then it’s not a belief at all. That’s not how it works people and you need to fix it now. A long time ago, this pretty wise dude said, among many other smart things, that (paraphrasing) “the meek shall inherit the earth”. Well folks, I have some obviously painful news for you. The meek have no chance in our world of ideological natural selection, and are virtually extinct. Everyone is vying to win the ideology hunger games and no one is winning. We are all losing. The only meek-ish folks left are children and people like me and my peers, and children are only meek until their parents or society completes their indoctrination into which “side” is "right", and then they are gone. That leaves me and the rest of the developmentally disabled outsiders to represent the truly meek. For all of our struggles and need for assistance and care, we are the lucky ones who weren’t born with that chip in our brains that sees prejudice, greed, ego, and hatred of others because they are different than us or their beliefs differ from ours. And because of this missing chip, we treat each other as equals who all have a common challenge. Ironically, the only people who mistreat us or make fun of us are those considered to be our intellectual superiors. Go figure.

So here’s what I propose to help the rest of you who can’t seem to break out of your ideological Matrix. Take an hour a week and volunteer with the developmentally disabled, whether it be an individual or group, familiar or unfamiliar. As screwed up as you are, we can actually learn a lot from your compassion and your knowledge but better yet, you can learn more from us about compassion, empathy and and how not to be such an asshole all the time. (I warned you in the beginning that my ghost writer and I are working on issues, so bear with us).

Yours truly,

Sammy

Who you calling stupid?

I've pondered writing a blog on the "R" word ever since I started blogging, but always avoided it figuring it was an easy topic to keep in my back pocket when I ran out of ideas for topics to write about. Well, you know what they say, "you snooze, you lose".  I recently read the piece below on a site I follow called The Mighty and realized that I could not have summed up my feelings any better than its author, Phoebe Holmes did below when explaining the "R" word as it pertains to her daughter Maura. Maura and I seem a lot alike, and you can insert my name for hers below and the story would be exactly the same. So next time you are about to use the word retard instead of stupid, think about how stupid you may sound.

Being Retarded by Phoebe Holmes

All around me, people use the word retarded without a second thought. Sometimes, I’ll say “Um, dude, really?” and they’ll say, “Oops, my bad! But really! I was being so retarded!”

Sometimes, I let it slide. I realize that it’s a word that’s ingrained in our society’s vocabulary, and people use it without a second thought to its meaning.

But what does it mean to be retarded? Well, I know what it doesn’t mean.

It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.

It doesn’t mean not being able to find your car keys.

It doesn’t mean saying the wrong thing to a person.

It doesn’t mean forgetting your best friend’s birthday.

It’s not something to describe yourself as when you’ve spilled your coffee or tripped on a crack in the sidewalk.

It’s not something to describe your computer, car or phone.

According to Merriam-Webster Dictionary, the word “retarded” means –

: slow or limited in intellectual or emotional development or academic progress

For me, it’s not just any old word – it’s my daughter. My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.

In our household, being retarded means something different.

It means not being able to fully care for yourself.

It means not understanding what the doctor is going to do to you.

It means not being able to explain what hurts when something hurts.

It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.

But ever the optimist, I also know that  in our household retarded means…

…never realizing the negativity behind the word, “retarded”.

…never knowing the insensitivity surrounded the word’s usage.

…never realizing the ignorance of people.

…never knowing how other people view you.

Being retarded also means…

…loving unconditionally.

…finding joy in the smallest of things.

…being self-confident.

…not realizing that there are limitations.

…innocence.

This is Maura.  Her diagnosis?  Cognitively disabled.  Which means retarded.  When you call yourself retarded, you’re also calling my child stupid.  Because you use the word as just that – another form of stupid.

Let’s get something straight here.

My daughter may have cognitive issues. She may have delays. She may never live on her own. Scratch that. She will never live on her own.

But Maura is not stupid.

In her own way, Maura is very smart.  Maybe smarter than us at times. She has more self-confidence than anyone I know who has called themselves “retarded”.  She is the best judge of a person’s character than anyone else I’ve ever known.

Yes, she is slow to learn things. But she is not stupid.

I know that most people don’t use the word “retarded” maliciously.  Most people I know use it in a self-depreciating way. And when I point it out, they go, “Oh wow!  I’m sorry!” and they truly feel like a heel. But the thing is, you’re still using it in the way that people who do use it maliciously use it as – to describe stupidity.

So why not just use the word “stupid” instead?  Because I know what “retarded” is.  I live with it in the form of my daughter. And in our world “retarded” doesn’t equate to “stupid”.

Read more: http://themighty.com/2014/06/being-retarded/#ixzz3sKWwPga5

Gravity

I spent Easter weekend in DC visiting my brother and hitting the museums. Mostly the Air and Space museums. I went to both. The one on the mall and the giant one out at Dulles. They have the Space Shuttle and the SR-71 Blackbird. Seems to me that humans have been trying to defy gravity for a long time, but gravity always wins. You can't escape it. I also took some time on Easter Sunday to visit Arlington National Cemetary. If you want to experience gravity, I suggest you take some time to walk the solemn grounds and come back to earth a little. I was visiting the internment site of my cousin Christie Day. She was just as much a hero as all the people I learned about who tried to defy gravity. But she was the opposite of them. She accepted gravity. She stuck close to the ground and focused on the task at hand, raising an amazing Autistic son. She was a real hero, but not one you will read about in a museum. She was just as brave if not braver. She was the reason her son is an amazing young man now, who is his dad's best friend and who is smart as a whip. You see, Christie was his hero. She home schooled him and personally and tirelessly made sure he was ready for the world even though she was dying from cancer. The gravity of all gravity. She was barely 50 years old. She built a classroom for her son in her house and educated him better than any school could. She never stopped smiling and fighting the disease that would eventually win. She is one of the people that make mom cry when remembered. You see, people like Christie and mom have a special tie because of the gravity that has forced them to remain grounded for a greater purpose. I am sure they would love to spread their wings and fly for the stars, but they cannot. They are tasked with a much greater but much unheralded purpose.  They care for us. The special ones. They sacrifice their potential in the world that we herald in museums,  only to be the heroes in my world. They deserve to be laid to rest amongst those who's bravery is unchallenged. They are the true pioneers who brave new worlds for their children. They make the future brighter, if only for their child.  They defy gravity every day. Their museum is in our hearts. 

Dear Jenny, Please Don't Kill My Big Bro!

Listen to smart people!

Yes, this message is to Jenny McCarthy and all the other famous Non-Vaxxers, Anti-Vaxxers and negligent parents out there who have single handedly helped to bring back measles, a disease that we thought we had eradicated. I have compassion for the few of them who face the challenge of being a parent to an autistic child, but I lack compassion for their misguided belief in bad statistics and adherence to fraudulent studies. I have even less compassion for those parents who choose not to vaccinate their kids for fear that it "might" cause autism. It doesn't. And that's a fact. Look, I am not a fan of pharmaceutical companies and don't trust them, but I do my research. Google the studies and you will find enough supporting facts. Or just read this article by Sanjay Gupta which sums it up neatly for you. There are plenty of autistic kids who weren't vaccinated, and even more non-autistic kids who were vaccinated. You might wonder why I'm on my high horse about this issue. Well, you see, my Big Bro has been lucky enough like me to hit the rare disease lottery which means due to a few chemo treatments for his disease, he has a severely compromised immune deficiency. He relies on weekly treatments that he injects into himself to fight off things you and I don't even worry about. No treatments, no immunity. No selfless donors of blood products used to create the treatments, no immunity. He also relies on the assumption that intelligent members of our society will not do things to enhance his chances of biting the dust. Which brings me to the Anti-Vaxxers. They only have the luxury of even having a choice not to vaccinate because of all of the responsible people who have vaccinated over the years. The responsible people created the measles free world which now allows these self-absorbed parents to "choose" to protect their children at the risk of killing babies and cancer patients and immune suppressed folks like Big Bro. How nice of them. I am sure they will change their tune when their kids are getting measles at an alarmingly high rate. Oh, and thanks for the impending unnecessary costs to our already challenged healthcare system. I'll end my rant with one question to all of you Non-Vaxxers. What are you going to do when they come out with a vaccine for autism? I suppose you won't vaccinate for fear that it might cause measles :-)

I Know People...

Yeah, that's right, I know people. I know what you are thinking, I'm something special because I know some pretty important people. Well hell yeah, I am special and I know some of the most special people you will never know. No, not Beyoncé and not Jay Z or Bono or anyone "famous". I know people who matter. Who are special. I know people who have to grieve over the loss of their children. I know the people who have to ignore the stares. I know the people who have to sacrifice everything. I know people who have to wipe tears from their eyes all the time when no one is looking. I know heroes who painfully worry about someone other than themselves. I know the most unbelievebaly strong people who will never be recognized for who they are. I know the people who matter to the people who need them. I know the people who don't eat or sleep because of those who rely on them. I know the stress of not being able to talk to your child. I know the people who lay awake at night accepting the reality that they or someone they love dearly is going to leave us all sooner than they should. I know the people who will forever be the caretakers of those of us less fortunate than you. I know the real heroes who live amongst us unheralded, unrecognized, under-appreciated. I know the mighty!  

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. 

Take a Selflessie

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.”

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. 

Sisters

Before you get all excited, this post is not about Sister Francis who taught dad how to take a real punch in the 4th grade at St. Monica. He's pretty sure her real name was Frank, but I digress. This post is also not about my wonderful sister Sarah or Dad's sister Dina who tolerated his abuse for years and still seems to like him. No, this post is about Richard's sister and many other sisters like her. Richard is a new friend of mine who joins me at Tennis Buddies on Saturdays. Richard has Downs Syndrome and is 53 years old. Don't let his age fool you. Besides playing tennis, Richard swims, and does karate among countless other activities. He's pretty cool. But even cooler is Richard's sister. Richard's sister cares for Richard. She drives him to all of his activities and is his primary caretaker. I am sure that when she was a young girl, she never imagined that she would be in such an important and trying role at her age, but she is and she is a hero. What would Richard do without her? No one plans to have a Richard in their lives, and no one plans to spend their golden years as a caregiver, but once fate challenges you, sisters like her show us what amazing people are out there in the world. I know my Big Sis is an amazing person who is literally capable of anything, and I know that when Mom and Dad are gone, she may be in the unenviable position of caring for me if I make it that far. I am convinced that she will be an exemplary mother and Sister making sure uncle Sammy and her kids have enough soccer balls and whiffle ball bats to go around. I would never ask her to volunteer for such a burden, and neither would Mom or Dad, but I know that she would step right in and keep me safe while caring for her family and changing the world for the better at the same time. Just like Richard's sister. So to Richard's sister and all sisters in the world caring for their disabled siblings in obscurity, you are my hero and I hope that everyone shares this post with as many sisters they can so that everyone knows what heroes sisters like Richard's are.

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.

Embarrassed??

Mom, Dad, Big Bro and Big Sis got back from London this week and told me lots of funny stories about the trip. One recurring story was how Big Bro and Big Sis would get so embarrassed when Mom and Dad would use their horribly bad British accents very loudly in the most public of places. The crowded tube, high tea, museums, everywhere. To me it sounds pretty darn funny, but they were beside themselves. Go figure that Big Bro and Big Sis are the only ones left in my family that can feel embarrassment. I'm not sure I could even feel or understand embarrassment, but even if I could, I couldn't care less because life's too short to care what others think about you. Now mind you, you should be embarrassed if you do bad things to people or do really stupid things like Justin Bieber or Anthony "here's my" Weiner. But just being yourself should never embarrass you if you are not offending anyone. I still make a biggie (poop in US english) in my pants in public sometimes, but you don't see me hiding my face in shame. I just roll with it and lie that I didn't do it and Mom or Dad, unembarrassed, take me to the loo :-) and clean me up. You see, when you stop worrying about embarrassment, you become way more self confident. Think about it. Do you think that Captain James T. Kirk would ever be so bad-ass if William Shatner ever got embarrassed by his over-acting super egomaniacal personality? No way, and what would the world be like without Captain Kirk? Way less awesome, Dad says. And what would the world be like without the unembarrassed you? Even more less awesome. So do me a favor this weekend and test out my theory. Let your hair down, and spend 2 full days not caring how others will judge you. You'll thank me on Monday.....unless you get arrested at which point I will plead the fact that I am an 11 year old with a sub 60 IQ. Now helm ahead, warp factor 2 Mr. Sulu.........Cheers!

Not Sel-Fish

I participated in a special needs fishing trip this weekend out of the Ocean City Yacht Club. I didn't know what to expect since it was my first time. I thought they would cram a bunch of kids like me on a party boat, drop anchor, and hope to catch a stingray. I couldn't have been more off-base. Mom, Dad, Big Sis and I were greeted at the doc by a 35 foot Triton center console sporting 750 horses worth of motor(s). It was beautiful, and so were its owners, Don and Sue Dolaway. Don and Sue could not have been more gracious hosts. There were countless other vessels like this, hosting kids like me and their families along with countless other volunteers giving their time, at their expense,  to make some kids smile. Dad asked Sue why they do this thinking they had a grandson or friend who was special needs, only to learn that they do it because it is fun. And fun they were. Don and Sue could easily enjoy this fun all to themselves, but chose to sacrifice a beautiful day for others. Not too many people with the gifts that life has bestowed them like Don and Sue are as giving. They may donate to charity, but rarely do you see people spending time and getting their hands dirty.....quite literally in this case. Too many people who have more than they will ever need take the time to give to someone else and that is sad. Let me correct that. They are sad. When I saw how much fun Don and Sue were having with me, I felt bad for all of those people who hoard their wealth and their time, and never take the time to enjoy the company of someone who might not have been as fortunate as them, whether it be someone like me who is limited by my brain or someone who may not be as fortunate economically. So, to all of you who can easily afford it, invest in an experience of volunteering or reaching out to others. It will return nothing financially but will provide immeasurable returns to your soul.

TBT Blog Post

To get in line with the trendy TBT crowd, I dug up the following letter written by my Mom. It was posted at my 2nd birthday party which at the time was a huge celebration for me making it to my 2nd birthday party. Everyone who read it got to take a light blue wrist band similar to the infamous Lance Armstrong "Livestrong" bands. Our bands said "Hope, Courage, Faith" and Dad has worn his every day since that day....almost 9 years later. I would like to say that even though I am not famous, I definitely have fared better than Lance. So I apologize in advance for another post highlighting the trials of my family, but when you read this you will know that you can push through whatever trials you are faced with and have a mushy TBT Facebook post to look forward to in your future. Oh, and Mom, thanks for letting me be ME...

          "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."

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.

Nobody lives forever. Realizing this has made my life all that more precious. I thankfully do not have cancer, although I am still 50 percent more susceptible than the normal person. I make more time for the more important things, and I worry less about the small stuff. Accepting that death is as much a part of life as life itself allows for a more fulfilling and rewarding existence. This I believe.

Mom gets it...

The "C" Word

One word that should never be used: the "c" word

Mom just read an article about a beautiful young woman who suffers from a rare disability, (in fact it doesn't even have a name) where she doesn't produce any body fat. At the age of 25 she weighs a mere 58 pounds. She spoke with confidence, poise, grace, humility, and a sense of humor. When asked how she was able to speak with such confidence despite the fact that kids were afraid of her in elementary school and often bullied she replied " because my parents never said the word "can't". Her parents treated her like every other kid. Therefore, when she went to kindergarten, she had no idea that she was "different" than others. That got me to thinking. I can't remember the last time my parents told me I could not do something. When the doctors said I would never be able to take a bottle, my mom got rid of the feeding tubes and gave me a bottle anyway. When they said I would not walk, my parents got rid my walker ( in Disney World no less!) and had me chasing Mickey Mouse and Goofy. I got some bumps and bruises along the way, but it has made me who I am today. Instead of telling you what I can't do, let me tell you what I can do. I can run faster and farther than dad, I can throw a baseball harder than mom, I can make more baskets than Big Bro and I have more endurance than Big Sis. I can play any sport that involves a ball, and in most cases, I am better at it than my family. I have skied some high mountains, and swam with some beautiful fish. I even  flew in a  4 seater plane with dad just for fun! Maybe someday, I will fly the plane myself...

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.