My Yule Blog

I snuck away from my crazy family so I can write you a special Christmas edition of my blog. Things are crazy around my house this time of year. Imagine my entire family in a snow globe. Now start shaking it vigorously on Thanksgiving and don't stop until New Years. Get the picture? Dad is like Clark Griswold putting up trees and trains and exterior illumination all while grumbling and complaining even though he secretly loves it. Mom makes sure everyone and everything is taken care of and that all gifts are procured and delivered on time. Big Sis baked hundreds of cookies and is still baking. She eats lots of them to keep the inventory manageable. And Big Bro is making sure the couches aren't stolen before our big party. Sometimes he leaves his post to watch me or go buy gifts :-) Truthfully, he too is in the spirit. Even though there is lots of stress and yelling and hard work, I wouldn't have it any other way. These people are MY Santa. Santa isn't some stagnant image created by marketers who want to sell product, Santa is real and he's the people around you who make you feel loved this time of year. Santa is you! It's the spirit you have, to make the lives of others a little better even if it's one day a year. You can be a holiday hero like Santa. Just for fun, below are my top 3 fictional holiday heroes who embody the spirit this time of year.

Clark Griswold


Clark never gives up in doing whatever it takes to make the holidays perfect in their very own dysfunctional way. Just like my family, except I'm the squirrel in our house that disrupts the whole event...





George Bailey

Selfless George impacts everyone in town, loses everything because of his dufus Uncle Billy and mean Mr. Potter, only to be redeemed in the end by all of the friends whose lives he touched. This movie makes dad cry even though he would have put Uncle Billy on Mr. Potter's lap and wheeled them both off the bridge.






Yukon Cornelius

Yukon accepted and helped out the misfit toys. Plus, he was the Rankin and Bass bad ass who took on the Abominable Snowman long before Luke Skywalker killed him in the Empire Strikes Back.

The Ghost of Christmas Present

Since it's a few days before Christmas, I want to ensure that I don't get any coal in my stocking. In an effort to be completely honest, I need to confess something to a few of my readers. It has been brought to my attention that some of my readers who don't know me too well, think that I actually write all of my own posts. You can't imagine how flattered I am that people think this considering just how "special" I am. I hope to meet you someday so you truly understand what that means. While I am pretty amazing, I am also pretty low on the IQ scale.

My confession is that my dad ghost-writes my posts for me because I don't know how....yet.  He takes my inspiration, and writes just how I would think about things and helps me achieve my goal of making people smile which is one skill I was definitely blessed with. Hopefully more people will end their week with a smile as a result. 

So, I hope this revelation doesn't stop you from reading and sharing my blog. It truly represents me and my point of view, not my Dad's. If my Dad wrote what he thinks about, we would need a coal shoot in our house...

Who Is Your Person Of The Year?

Pope takes a selfie....

This week, Time Magazine selected Pope Francis as their Person of the Year. This blogger could't agree more with the selection. As Time stated, the Pope, aka Jorge Mario Bergolio was selected, "For pulling the papacy out of the palace and into the streets, for committing the world's largest church to confronting its deepest needs, and for balancing judgement with mercy" Finally, a Pope who seems to follow WWJD. Congratulations Jorge! 

Time selects the winner based upon candidates being the most influential, good OR bad. I suppose that's why Miley Cyrus twerked her way into the top five finalists. Wonder what the Pope would have said behind closed doors if he lost to her. Maybe he would have learned to twerk :-)  The Pope's selection got me thinking about all of the people we know who are our "Person of the Year" for being the most influential in our lives...Not everyone has the same stage as Time's winners but they are still stand-outs for us. So, I plan on naming my Person of the Year every year at the same time Time names theirs and I suggest all of my blog followers do the same for that person in your lives who stood out and influenced you the most throughout the year. 

My selection this year is none other than my Big Bro Stevo. He had quite a year dealing with his immune condition and a sobering cancer scare while nailing his college entrance exams. He fought hard to keep his grades up to mom and dad's expectations and kicked-butt in the college application and essay process. At the time of this blog post, he has been accepted into Pitt, Penn State main and GMU. No turn downs yet, with more acceptances to come I am sure. He also turned his senior service project into an amazing tennis program for special needs kids like me. He could have "mailed it in", but didn't. He and my friend and neighbor Julia made a difference in the lives of lots of my friends who are challenged and an even bigger difference in the lives of their parents and the people who came out to volunteer each week. Even though he complains about me a lot, I look up to him every day and he is my hero. I'm going to miss him when he goes to college, but know he will always be someone who makes a difference in my life and the lives of others. Congratulations Big Bro for winning my first POTY award.

Who wins your Person of the Year award for 2013? Please comment on my blog or Facebook with your winner so they know how important they are to you. 

Oddballs

Mom and Dad "celebrated" their 20th wedding anniversary this week. They are oddballs. Yup, considering the divorce rate is roughly 65 percent, and slightly higher for parents of children with special needs, they are not the norm. Now while the oft-quoted 80% divorce rate for parents of special needs children is not supported by facts and most likely untrue, I understand why people use that number when praising themselves for still being married when they have little buggers like me draining most of their energy. I think they just assume the number is 80% or higher because of how stressed they feel. They want to say the number is closer to 100%, but they know that would be breaking the truth rather than just bending it a little. I give them a pass on their white lie since they are probably trying to hang their hat on something in their lives that is positively against the odds rather than negatively against the odds like having a kid with special needs. Well, the truth is, every relationship is difficult and the addition of a child with special needs or a child with health issues just magnifies the difficulty. In the end, they are not really odd, they are just great parents like the majority of parents. The oddballs are the parents who don't love their children, and I'm hopefully confident that that population is a small minority. So while we should still celebrate wedding anniversaries as a testament of two people's love for one another, I think we should start celebrating parenting anniversaries starting with the birth date or adoption date of someone's first child. Since I am a champion of inclusiveness, this gives all my friends who have divorced parents or have two moms or two dads or one mom or one dad a chance to congratulate their parents for being awesome. So, happy "wedding" anniversary Mom and Dad. And when Big Bro turns 18 in June, I look forward to wishing you a happy 18th Parenting Anniversary! (message to Hallmark who have created numerous holidays and anniversaries just to sell more corny cards, I own this one)

Tis The Season To Be Angry

Most of you only see my good side which is how I am 90 percent of the time. But when my little brain gets tired or frustrated, I go full "Hulk Smash" mode. Even Dad and Mom who work out every day have trouble holding me down. I had a hulk smash moment on Thanksgiving. While Mom and Dad were working hard to get the house ready for all of our guests, I flipped out playing the Wii and smashed another LED flat screen. That's right, another one. This forced Dad and Big Bro to venture out on Black Friday to get a new one. Dad should be thankful my event was in time for him to partake in the annual running of the bargain hunters, but he didn't see it that way. This would be a recipe for disaster sending the two people in my house who have the most trouble controlling their anger. Big Bro and Dad. Big Bro can't control it for 2 seconds before he resorts to his arsenal of F-Bombs and other words I don't even recognize. And Dad who usually keeps his tirade of calling people some of the worst names ever uttered to the safe confines of his car, but yesterday unleashed some of his classics within earshot of the People of Walmart. Today, our version of the Griswolds will venture out to get a Christmas tree and string up outdoor lights and decorate the house. This usually presents a ripe minefield for the three angry amigo men of my family to have some classic outbursts, so watch the news, you may see us.

So what's the point of this post you ask? Well, amidst all of the anger, there are people who control it in surprising ways, and that is what I am thankful for. People like Big Sis who keeps her anger almost unseen and Mom who should have killed me 100 times by now for some of the outbursts I have, but is able to calm me down before I hurt myself or break something....usually. You should be thankful for all of the people out there who take the high road when most people would get angry. For example, a few years ago my family went to a swanky resort in St. John USVI for a vacation. I'm not sure what we were thinking dragging this circus of disfunctionality to such a beautiful place, but that's my Mom and Dad, never shying away from what normal people do. Well, HELLO, I'm not normal. I always have that little green Hulk just below the surface, which usually rears it's head when we try to sit down and eat at a restaurant. So there we were on the last day of our vacation trying to have breakfast at the swanky resort's beach-side restaurant. We almost made it through the meal with Mom and Dad doing their job of flanking me on each side shoveling food into their mouths with one hand and managing me with the other. Eat some eggs......fix the iPad, bite of bacon....put Sam's shoe back on. It goes on like this until I reach my breaking point and need to be extracted from the scene by Dad while all of the other patrons try not to stare at what appears to be a crazy child abduction. Why someone would abduct a crazy kid like me in full meltdown mode is kind of a funny thought in and of itself. So towards the end of this breakfast, Mom and Dad let their guard down for one millisecond, just enough time for me to get off my shoe, get it into my free hand, and heave it with all of my might across the restaurant.....I can throw pretty far. It was like everything went into slow motion as we watched the Nike flying slowly through the air all tensing and hoping it would land safely on the floor away from any diners. Just then, slow motion stopped, everything sped up, and gravity took hold of the sneaker and yanked it right onto the table of a man and woman at the other end of the restaurant. It smashed the man's water glass which was full of water.....of course.....and then hit his plate and skittered noisily off the table along with his silverware. Before the man could even comprehend what had just happened, my family and I had thrown some money down for the bill, scooped up our belongings and fled the scene to the ferry which would take us away. We finally calmed down as the ferry pushed off and we were surrounded by Caribbean sea. Ten minutes into the ride, Dad's heart sunk as he saw the man who ate my shoe for breakfast approaching us. How lucky, no where to escape to. Dad flipped through a few scenarios in his head of how he would deal with what was sure to be another angry person who didn't understand our full back-story. So as Dad planned his curse words carefully and planned how he would neutralize our new friend if it got to that, Mom looked out for the rest of us. Then, something special happened. The man smiled at Dad and handed him my shoe. He told Mom and Dad that he could see what we as a family have to deal with and complimented them for doing so. That man made a lasting impression on Mom and Dad. Dad thinks of him a lot when he see's other people getting angry over nonsense like Black Friday deals or the barrista getting your confusing latte order wrong. So in this season ripe with anger-producing moments, try to be like the man on the ferry and be nice to someone. They'll be thankful. And to that mystery man, I hope you can someday read my blog and know how thankful I was. Happy Holidays to you....

How to Cheat at Cards

I must confess, I really don't play cards. I can almost count to 20 but what the heck number is Jack??? Anyway, this post is not about poker, but about the cards you are dealt in life and how you can help others cheat them a little. Every day, people are dealt crappy hands....like mental handicapped for you (gee thanks), rare autoimmune thingy for you (sorry Big Bro), cancer for you, stroke, heart attack, layoff, etc etc. You get the picture. Unfortunately, you can't change these hands before they are dealt, you can only fold or bluff your way through them. Some people win that game, some lose. So let's get to the cheating part. You can play dealer every now and then, and stack the deck in favor of someone else. That's the catch...you have to deal to someone else. For instance, I was dealt the old 7-deuce off suit (look it up) which is pretty bad, but throughout my life I have been slipped a lot of Kings, Queens and Aces. No matter how temporary the game....a day, a week, years, a good hand is a good hand. So think about someone you know who is trying to bluff their way through life with a crappy hand, or worse yet, ready to fold, and deal them a good hand. Help them in any way you can afford whether it is with time or money. If you don't know anyone, or really want to help a family with the worst cards imaginable, read on for a suggestion.

Every year around this time, when everyone is loading up on food and gifts for the holidays, Big Bro, Big Sis and I help adopt a family through a wonderful non-profit called the Kelly Anne Dolan Memorial Fund. Kelly Anne Dolan was a little girl diagnosed with a rare form of leukemia. Her parents Peggy and Joe learned how the serious illness of a child can affect an entire family—emotionally, physically, and financially. After six-year-old Kelly lost her battle with the disease in 1976, Peggy and Joe created the Fund to help families dealing with the illness or disability of a child. Every year around the holidays, the Kelly Anne Dolan Holiday Adopt a Family program helps families who have been devastated by the emotional and financial fallout of a child suffering from serious health problems by lining up adopters who will buy gifts for these families who cannot buy them on their own. We are talking about everything from toys that kids wish for to gift cards so that these families can have a holiday meal or buy the barest of necessities. You get the family's story when you volunteer, and after reading just one of them, you will realize just how bad the deck has been shuffled for some people. So take some time as you prepare to spoil the ones you love this year, and deal a winning hand to someone who desperately needs it. 

Thank Someone!

This is a picture of me and my friends Cait and Nate. They work at the Ambler YMCA. I recently presented them with an Impact pin for all of their hard work making kids like me feel normal at the Y's Ability Teen Night. I wanted to thank them for the good things they do, and how they really care about people. When is the last time you thanked someone who makes a difference in the lives of others? I'm not talking about an email or a text, but rather a "look them in the eye and shake their hand" thank you, or, an old fashioned hand-written note. You still know how to write a note on paper with a pen, don't you? Your homework assignment for this weekend is to personally thank a friend, loved one or even a stranger who does something good in the world. Trust me, they will feel great and you will feel even better. Please share this post with your network so my blog starts to get more readers.....for that I THANK YOU !!

Bad News? Are you and Egg or a Rock

Some people get bad news all the time. Some infrequently, and others may have been lucky for now but are due. No matter what, when that big bad boot of bad news comes kicking your way, you will be either an egg or a rock. Some people are like eggs, crushed very easily by the slightest tap from the boot, offering up their squishy yellow insides with ease. Other people are like rocks. The boot can kick and stomp them, but they remain rock hard. They may have a few dents and scratches, but they're still rocks. Remember this, eggs make chickens...rock makes mountains. Which are you going to be?

Fear

This was the first Halloween in my life that my crazy little brain decided to really learn what fear was. I sort of knew, but not like this. I had trouble walking through dad’s zombie graveyard every morning and I could only trick or treat for a little bit before I wanted to come home. I even had to sleep with mom one night. But I’m not embarrassed because upon learning what fear really is, I also learned what bravery and courage really are. I also realized that I know so many brave and courageous people who face some pretty frightening things on a daily basis and you wouldn’t even know it from the way they live their lives....as if whatever is they fear doesn’t even exist. So next time you are afraid, take the opportunity to be a brave person. I’ll end with a quote from Game of Thrones, my Big Bro Stevo’s favorite show because Stevo is the bravest person I know…

“Bran thought about it. 'Can a man still be brave if he's afraid?'

'That is the only time a man can be brave,' his father told him.”

Yes you CAN

Some times we all need a little inspiration to help us push through a barrier. Many times the hill seems like a mountain and we want to give up and throw in the towel. In this week’s soapbox, I’m cheating a little by sharing the link below to Team Hoyt so you can read their story and watch their video. I know I am an inspiring kid, but these guys are on a whole different level. I know most of you have probably seen this story before, but it’s just as inspiring every time you watch it. If you haven’t seen it ever, I am glad to be able to share it with you. Make sure you watch the video, and read the story.

Team Hoyt Website

Change

My dad has carried the business card pictured here for over 10 years. The card signifies an event that was a life-changing event in my family’s lives. It is the business card of the CHOP neurologist who delivered the message to my parents of my diagnosis and prognosis. Basically, Dr. Stinkel (name changed to protect his anonymity due to the fact that he had a stinky bedside manner) informed my parents that I would probably die during child birth and if I did live, I would be plugged into all kinds of machines to keep me alive and that I wouldn’t breathe, eat, speak, walk, see, hear……you get the picture. This whole curve ball was a change that my parents had to deal with on the fly, and they did so fairly well. It changed their lives, their careers, their relationship and their perspective. Amazingly, they were able to deal with it and adapt to the change that life had dealt them.

The card also signifies the ability of us to change things supposedly unchangeable. I was sent home with hospice care because I was supposedly a “short-timer”. Hospice’s job was to make sure my parents knew how to feed me through a tube and how to give me morphine when the pain got too bad. They were useless. But rather than sit and wait, my mom changed things. She never gave up, and continued to try to get me to eat and crawl. My parents took me everywhere and we celebrated birthdays every day…..then every week, then every month. Mom dismissed hospice and made dad throw out the morphine (he wanted to keep it for himself J). Ever since that change that my mom created, I have been a pretty amazing kid. I do everything and make a difference every day.

So think about how you deal with life’s changes. They are inevitable and unavoidable but you control how you adapt to them. Be positive. Also know that you can create change so long as you are persistent and have faith in yourself and in others.