One of Our Own

This past Wednesday dawned way too early as we got all the kids up, dressed and fed.  It wasn't the simple fact that it was 5:30 in the morning, nor the fact that I had been on call with the Northport Fire Department last night (one call at 12:00 so that wasn't too bad) and had slept on the couch.

Instead, I think it had much to do with the fact that Amy and I didn't get much sleep over the last two nights as we were waiting for January 30th to roll around.  No, its not an anniversary of any particular event in our lives, rather it was the day that we would be taking our beautiful little boy in to Stonybrook Hospital to have the tumor removed from his shoulder blade.  None of us had really slept well for quite a few nights worried about what might happen.  William would get up a few times a night not really sure why but it was clear he was more anxious than his nine-year-old brain could rationalize.  Amy and I weren't able to sleep for the simple reason that this was OUR little boy.

Those of you who followed our Connor's Army Ride Across America (or CARAAM for short) know that we were riding for the children of Sunrise Day Camp and with the combined efforts of our entire family Connor's Army was able to raise $25,000 for the camp (by the way, if you're reading this its still not to late to donate, all you have to do is click here for more information) and send four kids to a life changing summer experience. 

What many of you may not know is how much my children invested themselves in this mission to help the kids of Sunrise.  It wasn't just giving up their summer to ride in a van and support their insane summer.  Wherever we went they were the embassadors and PR crew par excellence.  All it took was for Amy or I to engage in a conversation with someone about what we were doing for the summer, one of the kids would come up and hand them a CARAAM brochure and talk about it too.  And more often than not it was William who was being the PR rep.

The kids also had a goal this summer of riding along with me and also contributing to the effort to help the kids of Sunrise by doing a small percentage of what daddy was doing.  Sarah's goal was 10% or 400 miles.  The boys on their little 20" bikes were going to have a harder time of it and couldn't really handle steep hills so they could only join me when the going was relatively flat so they made a goal of 100 miles - 1/4 of Sarah's goal.  They would pedal along as fast as they could move their legs and any time the terrain sloped upwards William seemed to feel it the most.  But he was determined that he would get his miles in.  He was the one that was the most raring to go and even now when the weather is 20 degrees outside he wants to go on a bike ride with daddy.  He loves it and that's why he was so devastated when during our day of riding from Mount Vernon to Alexandria on the Mount Vernon Trail he pooped out and couldn't finish.  Amy had to pick him up and take him along and for the next week he would continue to fret about not being able to finish his miles, not being able to get his 100.  So during our layover in Swedesboro we made it a point to go on a ride so he could be even with James. 

My son is a fighter and yet he is one of the most empathic little boys you'll ever meet.  He was so into helping the kids fighting cancer and when we met Elijah Dalton he immediately bonded with him and they began playing as if they were old friends.  He understands that children who are sick are just like he and his brother, it doesn't matter if they have no hair or if they have other physical things going on.  And he just wants then to feel better.  That's why this week has been so hard.

You see, over the summer William, Sarah and James were spending lots of time in the pool.  We always tried to stay places where they could swim so we could make sure they got some exercise.  With all that time shirtless we became aware that William had a lump small lump on his left shoulder blade that didn't match the lump on his right.  We kept an eye on it and it didn't seem to hurt him.  But over the course of the summer we noticed it was getting larger.  It felt hard to the touch so we new it wasn't cartiledge or soft tissue but we had no idea what it was.  We returned to Northport and it still wasn't hurting him so we just kept an eye on it.

In October we noticed it was about three times the size it had been in July so we decided to take him to get it checked out.  His pediatrician suggested we go to a specialist and that would suggested another.  To make a long story short, after a lot of testing (MRI, Xray, and others) they couldn't decide conclusively what it was but the best guess they had was that it was an osteochondroma.   And it looked something like this - PLEASE NOTE, WILLIAMS' WAS NOWHERE NEAR THIS SIZE! It was perhaps 1/4 the size of this one.  I only show this picture because for some stupid reason we never took a picture of William's and this one is roughly in exactly the same place.

However, after all the testing they weren't 100% certain.  They also said that although they were reasonably sure that it was benign, it would continue to grow as he grew and if it did it could end up matasticizing at some point.  It was at that point Amy and I both said "take it out".  If there was to be any chance at all that William's growth could become full-blown cancerous we wanted it gone.  Added to that is the fact that most osteochondromas tend to be found at the end of growth plates on long bones and this one was in a scapula, not in soft tissue so the doctors are completely sure.  All William knew was that he had a tumor and he was going to have an operation which is what I think led to all the sleepless nights.

So on Wednesday Amy took William to Stony Brook Hospital and I dropped James off at intramurals at 7:00 and then I headed off to join them.  We didn't have a lot of time with him before he went in and then it was time to decide who would be with him as he dropped off to sleep from the anesthesia.  Of course mama won out and she sang him one of his favorite lullabies from when he was little;



Finally, a little after 9:00 they came out to tell us that the surgery had begun.  Now it was just the waiting.  We posted on facebook, caught up with e-mails and generally tried to think positive, healing thoughts and direct all our energy towards our brave little boy.  Finally Dr. Kahn met with us and told us that he got it all, it looked clean, he was 98% sure it was benign but that we would have to wait for two weeks until the pathology came in to be certain.

When they finally let us in to see him it was all I could do to keep from bursting into tears.   From all the calls I have gone on with the Northport Fire Department I'm fairly used to seeing folks in hospital beds.  A lot of the time I help put them in there.  But those are full sized adults and they're not my little boy.  As I saw him there on his side with the IV dripping out and surrounded by rolled up blankets to keep him from rolling on to his back I felt so helpless because there was nothing I could do.  Because I know my way around the beds I could adjust them and I knew what the SPO2 meant and how to interpret it.  It made me feel like I was doing something useful.

William was in a lot of pain and it tore me up to not be able to make him feel better at all.  The nurses all fell in love with him and his pink streaked hair (which he explained was for Valentine's Day - see it up top) and he charmed them all.  His nurse kept giving him a small dosage of pain reliever every five minutes but finally she had to give him an oral as that wasn't helping.  Small wonder since the doctor's basically scooped out the bone.  Finally we were able to take him home.

William has spent the last two days at home in his pajamas with mama, watching videos and resting.  He still wakes quite often in the night because of the pain and we have to give him doses of Tylenol with Coddeine which only last about three hours.  But he is healing and he is getting better thanks to all the prayers and thoughts of our family and friends.  But I'm still feeling helpless to do something for our little boy so I have to ride.  After a summer spent riding for the children of Sunrise with my own children its now time to ride for one of my own, my little William.

So when I rolled into Syosset High School this morning, this is what the Weather.com listed as the current conditions.

 

Was I freezing?  Definitely.  Was the wind blowing faster than I could pedal?  Roger that.  But all the pain and cold I felt today was nothing compared to the pain my little boy is feeling in his bones.  So I ducked my head and just kept pedaling.  And if I was hoping for a killer tailwind to help me on the way back that would be a big negatory - I had it right on my beam the entire time.  But it was all for my boy, my brave, truthful and unselfish real boy.

 

So now I need to finish gluing on the weights for the boys' Pinewood Derby cars and get them set for the weigh-in tomorrow.  William is going to get out of the house for the first time in three days and I can't wait to hear all the stories of how his friends are going to appreciate his being back.

 

And now I leave you with the lullaby I always sang for William when he was a little boy, "New Words" by Maury Yeston from the musical In the Beginning as sung by Brian Stokes Mitchell, enjoy.

  



Stay Well Y'all, and I will see you on the road - I'm pedaling for William.



State of the (Connor's) Army - The Impossible (?) Dream!

In honor of President Obama's recent State of the Union address (here it is below in case you didn't catch it);



I have decided to do my own State of the (Connor's) Army.  Its not so much of an address as an update.  Of course in thinking about this post, I wondered who even started the whole concept of a "State of the Union Address".  Well as with most things that made sense, it started with our founding fathers and with our very first President, George Washington.  He gave us the very first State of the Union address and if you want to read the full text you can find it here.

I have a feeling that it was much shorter than one hour and five minutes and he probably was not interrupted by angry shouts of "liar" from members of Congress as our current President has been.  I am going to go on a bit of an off topic rant here and it's really not about politics per se.  I have my political beliefs and you, dear reader have yours.   I have endeavored to come by mine through reading and listening to what politicians have to say as I'm sure you have.  However, it does seem that a vast majority of Americans (politicians included) don't think for themselves and are merely following the party dogma.  Mark Twain had this to say about politics;

In religion and politics people's beliefs and convictions are in almost every case gotten at second-hand, and without examination, from authorities who have not themselves examined the questions at issue but have taken them at second-hand from other non-examiners, whose opinions about them were not worth a brass farthing.

And I do believe that is often the case and that people demonize a President simply becuase he is from the other party.  And why?  Because the leaders of their party told them to, not because the really know (or maybe even deep down) disagree with the man.  It is the most thankless job in the world and as our 33rd President once said;

"All the president is, is a glorified public relations man who spends his time flattering, kissing and kicking peopel to get them to do what they are supposed to do anyway."

While our 36th President had this to say;

"Being president is like being a jackass in a hailstorm.  There is nothign to do but stand there and take it."

I think it is unfortunate that people from the Republican/Tea Parties seem to think that is what is expected of President Obama - just stand there and take it, we're going to kick you out anyway.  Despite your feelings about Republican or Democratic parties, the man deserve respect for trying to do the most difficult and thankless job in the world - I don't even think Mike Rowe would seriously want this job, despite his Poo Party Platform;



I know I certainly wouldn't want the job - being a teacher is hard enough.

Perhaps we should just all vote for this guy;



At least he wouldn't be afraid to tell Congress to shut up and get to work!

But I do enjoy my job and I have the pleasure of being surrounded by students who (for the most part) are passionate about dancing and acting and who want to be better.  The occasional speed bumps aside, I do get to spend my days, during and after school, with the best kids at Syosset High School.  They are witty, creative, passionate, caring, energetic and I learn from them every day.  The occasional drama from casting aside, mine is certainly not a Dirty Job!

The other "jobs" I truly enjoy are those of; husband (especially being married to my best friend), father, friend, son, brother, occasional little league coach, and chief cycist of Connor's Army.  As chief cyclist, I am required by our constitution to give a yearly State of the (Connor's) Army message to let you all know how things have gone in the past year;

This year has been one of unprecedented growth for Connor's Army.  Although we had received familial support in our earlier campaigns, 2011 saw us reaching far and wide via social networks to spread the word about our mission.  Of course, much of the time our statement of what we were intending to do in the summer of 2012 met with expressions of disbelief;

(You're doing WHAAAAATTTTT??????)



This was especially true of the campers and counselors I worked with at Sunrise Day Camp.  At least twice a week (if not more often) I would ride my bike to camp and many of them would ask me why I was doing this.  Once I started telling them they were somewhat incredulous and grateful that I would want to do such a thing.  But as I started talking more and more about this being a reality, people have been so supportive.  But there is so much more to do - more about that later.  But for now, the state of our own union;

2011 started out rather inauspiciously for Connor's Army as we really didn't have much of a presence.  We had received some wonderful sponsorship in November from the incredible folks at Smiles for Scott and they have since become our major sponsor.  Their donation really made us realize that we could actually do this.  Although we had originally hoped to do the cross country in the summer of 2011, we realized that we just didn't have enough in sponsorship to cover the costs of gas and accomodations for me and a driver.  At this point we weren't sure if I would be doing it alone or with a friend.  We realized this would be too much of an undertaking for me to do solo in the time available so a driver would be needed.  Unfortunately, I don't have any friends who could give up their entire summer to drive cross country with me (where is Benji Taylor when I need her?  Riding across the south in a Volkswagen Rabbit convertible to go to ballet company auditions becuase there was a Greyhound Bus strike that spring!) so we came to the conclusion in January that it would have to be my family going along as my support team.

Now this of course raises all kinds of questions since many people would be assuming that sponsorship would mean paying for my family.  I have had to reiterated (and I do it here again) that the cost of my family to go along would be born by us.  The only thing that sponsor dollars will pay for is costs of the transportation (gas, tolls, oil change, maintenance) and accomodations for me and a driver (anything over that would be born by us) and parts that I'll need to purchase for the trip (brake pads, cables, extra chain, extra spokes, tires, tubes, etc.). 

So in January/February we received some more sponsor dollars from Alan Rosenberg at Coinland.com and some smaller sponsor donations from Spectacular Smiles.  Things began to look up and it appeared that we would be able to meet our sponsorship goal of $15,000 by June 2012!  But now the sponsorship has somewhat dried up.  I began a program of reconditioning bicycles and selling them by posting them on Craigslist and placing them in front of my home for passersby to see.  We've raised almost $1,000 through that project so we are moving forward but the State of Connor's Army is still seeming short by $2,000 of our sponsorship goals.  We have also gotten lots of support from various alumni who have done fundraisers on their own campuses.  This past fall Jaime Blanch, who is attending The University of New Orleans co-founded a group called "UNO Fights Cancer" and they raised $100 for Connor's Army to help us.  In the spring we also had Sooner Printing and Merelis Productions join us as sponsors.  Peter Haughwout and Damon Tommolino (colleagues of mine at SHS) put on a show April 9, with their group Art Studio 85 at the Walt Whitman Birthplace Museum and in so doing became another of our sponsors.  It was an incredible evening of art and music with part of the proceeds going to help us in our mission.  

But the State of things now is that we still need to find a few more sponsors - we're almost there but we're still working on it.  On the positive side, Amy and I are pretty good at being frugal (she has what she calls her Five Year Plans - I sometimes jokingly refer to our home as the Gulag) so chances are we will be able to take a good chunk of sponsorship monies that have been unused and give them to Sunrise.  So in the end the kids will benefit.

The other part of the State of Connor's Army has been the support.  Here we have grown amazingly, mostly due to ACT students past and present.  I cannot tell you how much they have given of their support on the social networks and helping us get the word out.  To give you an idea of our growth, on January 2, 2011 we had 250 likes on our facebook page (if you're reading this and you've not "liked" our page, do me a favor and like it now!) and now we have 1,336!!!!!  Much of that happened this past fall.  At the beginning of September we had 850 likes so we have gained 486 likes in the last five months alone!!!!  So now, to dream the impossible dream - WE NOW HAVE A GOAL OF 3600 LIKES on our Facebook page! Every good State of the Union address needs to list some goals and this is one of ours! The idea is to have one "like" for each of the miles I am going to ride this summer! If I can get my self together, I'd like to be able to list on my blog every day the people that I "rode for" that day.  If I can figure it out, I'll just go to my list of people that like my page and I'll start listing people on my blog at the end of each day and say who I've ridden for.  That's the plan, not sure if its feasible or if I'll just choose a group of "likers" at random.  Either way, I hope you continue to follow this blog becuase once June 24th rolls around, I'll be posting EVERY day on my way back to Wheatley Heights and Sunrise Day Camp.  If you have a specific area of the country you want to be "virtually riding" with me, let me know and I'll try to accomodate you!  Just so you know, here is a ROUGH approximation of the route;

(C'mon pick a mile, any mile!)

So what you would do is say post to me - "Can you ride a mile from Four Corners to Pueblo, CO for me??" and I will do my best to do so!  I'm hoping to have a small video camera that I can film portions of the ride from the saddle so I can possible post YOUR mile on this blog as part of your virtual ride!  But you have to be a "liker" to know what's going on and follow this blog to see your name in cyberprint!

And speaking of this blog, that is another incredible thing that has happened this year!  As of the end of 2010 this page only had 6,752 total views since I began blogging in June 2009.  Since that day, we have shot up to over 12,786 views!!!!  In the last year alone we have doubled our viewership!!!!!!!  That means people are reading our message (or at least clicking on our videos) but I hope this means the word is getting out!!!!  Again, if you are reading this, even if it just means you're looking for pictures and videos of Brian Stokes Mitchell, Mike Rowe, or King Julian please take a moment and add our facebook page to your likes.  Because of your curiosity, you could see your name listed in this blog as one of the people I ride for this summer.

So those are some of the wonderful things that have happened this year and that is the State of the (Connor's) Army!  We've had our ups and our downs.  We've had incredible examples of support and belief in what we're trying to accomplish for the kids of Sunrise and we've had defeats that have left us spiritually battered and bruised to the core of our beings.  Yet we have some great fundraising opportunities coming up which makes us (okay me) very optimistic about the possibility of climbing out of this dark morass and being able to accomplish our mission of sending eight kids to Sunrise Day Camp.  I'll be writing about those soon but so many of my friends and former students are coming together to help us reach our goal that we know it can happen.

What can YOU do?  Its simple - SPREAD THE WORD!!!!  
1) Invite EVERY person you know to like us on facebook!  They can get their name in this blog!
2) Spread the word about our Ride Across America (also affectionately known as CARAAM - Connor's Army Ride Across America) to your friends and family (you can say things like, "I know this crazy %$#%@# who is going to ride a bicycle from San Diego to Long Island to help a bunch of kids" and then answer their questions). 
3)  If you know someone who might be able to help us with a sponsorship (either financial or in-kind donations) PLEASE get us in contact with them!  Whatever we don't use or spend will be given to the kids of Sunrise.  If its supplies, we'll sell what we don't use and give the money to Sunrise!

Let us be able to pull together to say YES, WE CAN!  Together we can Dream the Impossible dream and together we can make a difference!

And now your dessert for staying with me this far.  The incomparable Brian Stokes Mitchell singing "The Impossible Dream" (and by the way, if any of you know him, please invite him to like our page too! - Stephen Mosher, hint, hint!);


Stay well my friends and I'll See You on the Road!