And I have to take a minute to interupt this post, BECAUSE speaking of wonderful people and the real friends who never judge, who accept and love.  I was thanking the wait staff for their hard work and dedication to us on many levels and made the mistake of leaving out a very very important person in our lives.  Sandi Shelton (www.sandishelton.com) just passed it off as nothing when I never mentioned her name. There you have it!  A true friend! And you know what she really meant it, I know it!  She is kind and real, the kind of friend we should all have.  So SANDI!  Public apology…….you are the last person I should have left out!!

It is quite amazing to me how small the world really is.  Each year we get a few more people who so graciously give their time and money to us.  Each year those people seem to walk away with a little more insight, a little more compassion for their fellow human being and a whole lot closer to those who they met during the evening.  The reason I know all this is because I get the best phone calls and emails giving me support and guidance from the new people at the event and from the people who have been there every single year.  Isn’t it great that we can all continue to learn from each other and more importantly grow from our experiences together and become better people

I am blessed in that way because I learn so much from my girls.  I know I say it a lot but this year especially has been an enlightening year for me.  Having lost so much personally and having had to overcome so many stumbling blocks. I guess also for having had to fight  on behalf of the girls.  It would be easy to become bitter and angry during any life changing events, and believe me it would be very EASY to become arrogant and cold having to fight for simple rights that others enjoy every day.   But I do not, and the reason I do not is because each and every day I witness true strength through my girls.  I watch two totally different human beings struggling for the same rights and the same desires to be accepted by everyone.

Sam is so rough at times and Alex just keeps it all in.  Instead of fighting them I have learned to see them for their unique qualitites and build a respect for each of their personal traits.  Do I always love what they do or say? NO!  Do I always agree on their way of getting things done?  NO!  But I have learned to respect their views and accept their ways. This can be applied to each of us in our own personal lives and if we could all learn to accept and respect all people for their true value it would make the world better.   I have lived humiliation through the girls eyes and felt first hand the lonliness from being tossed aside.  Why do we do this?  Why do we judge so much? Why do we have this picture of what people SHOULD be like?

I was watching a show with Matty yesterday on a kid channel. There were these two teenagers trying to “dump” one of their friends.  They plotted to lose him by finding a “nerd” to pawn off on him.  WHAT THE HECK!  Well, they found this over weight kid with pimples on his face and bad hair and tape on his glasses and very awkward.  I watched in horror as Matty witnessed the boys friends so carelessly arranged the handoff at the expense of the “friend” and the “nerd”.  Luckily I was able to say a few choice words to Matthew like, gee that doesn’t seem nice, AND  they don’t know that boy, they are really making a bad judgement about who he is and gee that boy could be a best friend to one of them.  What was that teaching a very young audience?  Ok am I now being overly sensitive?  I don’t think so.  This resinates to our every day life. This does happen each day in society.  We have to stop and think about how we treat each other and how our kids witness how we treat each other.

STOP, get off the rat race train!!!! Use kind words, understand the other persons struggles, look for each person’s value- because every single person has a value!  LOOK FOR IT!  Just beacause someone may not look like society tells us they should…….LOOK past that!!! Feel compassion for each other and understanding!  Connecting keeps you young and alive. We can each connect every day by some doing simple things; smiling, laughing, crying, human touch, listening, looking someone in the eye…….the list goes on.

More importantly realize that no matter what age we are we can still keep learning and don’t discount the value in learning from someone much younger!  You see a new perspective and feel the joy in their passion! I continue to learn from the girls and the wonderful friends they have, being surrounded by a younger perspective keeps you alive!

If you can’t be open minded to these wonderful joys of life and breathe in the miracles that life has to offer… reevaluate your life.  If you can’t feel the humility of someone being chastised from society rethink your values.  If you can’t stop and aline your priorities, if you can’t be open enough to listen and live your life with passion and kindness, then you should just lay down; because my friend, you are already dead!  Don’t die out……choose to live your life in the most positive way you can!

In Peace and love

Always

Mary

the start of our journey

a few of the members along with co-founders Ron & Raychel

It is not necessarily the easiest thing to do.  Deciding to take part in a drug- trial is serious business.  It is exciting because when Sam was diagnosed there really was nothing going on.  AND I mean NOTHING.  Yes there were a few people working on cloning the gene.  That means that they didnt’ even have a way to confirm a diagnosis through blood work.  Sam had to go through some pretty painful testing to have a diagnosis that was given based on clinical measurements.  A year later the gene was cloned and that was a big step for many reasons.  It meant that people could forgo the painful testing and the research could just go on in a more precise manner, and that is exactly what it has done.

With the help of a wonderful group-FARA- research has just taken off.  What is equally as important is that fundraising and awareness have also taken off. It seems like in the last ten years things just keep moving along in a positive way.

Paul brings such expertise along with incredible passion to the board.

Tom & Jen hard at work

So this brings us to our journey this week.  Sam has been brave enough to sign up on the FARA patient registry site and has also been lucky enough to have been called upon to take part in a clinical study for a drug.  Since I am really worried about the sensitivity of the whole thing I don’t want to say anymore.  But as in everything else in our journey together this has been a wonderful trip!

We have been able to take time to talk and laugh and meet all kinds of great people.  The worst part-leaving Alex.

my other hero

We are so used to being the three musketeers it seems so unnatural to split up.  But it would have meant finding one more person to come along and we just didn’t have a lot of time to pull it all together.  So she will enjoy some relaxing time away from us.

ok so I did most of the talking

We took the train so we didn’t have to worry about driving.  We enjoy taking the train as it gives us time to slow down and meet people.  We met this great young man who was getting deployed to Korea, he is with the Army and he was really sweet.  What was so very moving was that people would just walk up to him, shake his hand and say “Thank you”. I am embarrassed to say I never do that, but that I will do it now.  What a wonderful way to show respect and gratitude to these brave men and women who serve our country!  I cried and Sam was embarrassed.  But he was a dedicated and kind man we really enjoyed our time with him.

We got to Philadelphia and had a great walk up to our hotel.  We stay at the same hotel when we come so by now everyone knows us and it is a very friendly encounter.  We window shopped and talked and interacted with people on the way.  We had this GREAT dinner together at a Mexican Restaurant.  We started first for another Mexican restaurant that was recommended but after the long walk we found that it was not wheelchair accessible, but worse was that when I went in to try to cheerfully request help getting Sam up the stairs I was met with blank stares and a flat “no”.  Oh well their loss because it came to me than that there was this other Mexican Restaurant closer to the hotel. We found our way over and got to sit outside, it was beautiful weather in Philadelphia and the food was great!

Sam and our waiter Brian

We had a charming and funny waiter, Brian.  He and Sam had a great time bantering back and forth.  We had a wonderful meal and walked around the city some more before we crashed back in our room for the night.

The next morning we got up early and eagerly made our way to the hospital.  It really is odd to say but we love coming to CHOP.  The team “our team” is made up of the most amazing and well qualified people …ok I am going to say it …..IN THE WORLD!

The BEST neurologist in the world!

Dave, Erin, Lisa and now Baali…………. are just AMAZING.  They are the best of the best and then they treat you like a human being on top of it!  Something just doesn’t seem right about that!  Just kidding!  We love to go because we know we are getting the best care around, we truly enjoy their company and we feel like we are on the right track!  So we got there and saw our “team” and the table turned for Sam for the trial.  Without saying too much half way through the morning it became apparent that this was not the drug trial for Sam.  My heart broke for her only because her concern was she was letting “the team” down.  But what she doesn’t know is that she is still our hero!  What is important is that she stepped up to the plate.  The fact that so many of our kids and patient population step up to volunteer is what matters.  The rest is up to the investigators, criteria and yes maybe even a little ……..fate!  So our journey took us to an early trip back home but not to the end of the journey.  Because as we all know the journey continues……………….and through it all Sam remains my hero

So if you are willing and able give her a little “shout out”!  She deserves the acknowledgment!

With love and dedication to my girls and all those who volunteer their time for these trials.

Always

Mary

 Ok, So I have taken all these beautiful photos at work the past few weeks and have been so excited about actually working and being able to share my gratitude with everyone for being able to love my work, and appreciate my boss (and dear friend)  and just enjoy my clients and…….WHAM!  the carpet gets pulled out from under me when I get a phone call from one of the girls counselors from one of the state agencies that they deal with. Now I think I have kept all the posts positive.  AND I do not want to use this blog as a negative sounding board, I really try to live life in a positive way!  Do I?  I will defer to those around me to answer that question! Then maybe I should heed my mom’s word and not say anything if it isn’t good?  NOPE…….got to do it.

 I am so disappointed to find that when you deal with an agency because you fit the criteria, then you try really hard to work as a team, you know…. pull your weight!  Hold your own! Not expect just a handout! Treat others as you would like to be treated! Then you recieve blateant disrespect in return!  How do you hold your head up and hold on to that sense of dignity?

Well without naming any names………I am just have to tell  ”our side of the story”. Because there are always two sides.

Alex has been battling with an agency to be picked up as a client.  We started early because with Sam there were delays and when she started college all her services had not been done in a timely fashion so she started at a disadvantage.  It was a tough go, you know lots of crying and a high level of fear.  But I am proud to say that she made it through the tough times and she has done well.  So for Alex, we all decided to start a year early.  Things were really going well, she was diligent, hard working and always pleasant. Alex did very well in high school by senior year she was ready to take some courses at Southern so she could transition in to the college life with less stress.  She took a class each semester and excelled, she volunteered, got a schlorship…….the list goes on! As we worked with this agency I was my usual annoying happy and grateful person.  I was so happy to be working as a team, setting up what we thought would be the tools to help Alex phyiscally be on the same playing field as able bodied student so she could exceed her expectations  in college and she would move eventually into the workplace and be an integral part of society.  That is what I try to instill in both the girls and most know that this is not always easy in the general population BUT you would hope to get camaraderie, respect and advocacy in an agency that helps individuals with disabilities succeed!  As time went on Alex continued to do well and forge ahead, despite some hefty medical setbacks last year, she continued on to Southern and continued to do well. Unfortunately the biggest obstacle she has had to endure is that very agency that is put into place to help her succeed.  She has been met with nothing but indifference, ignorance and quite frankly finger pointing and the “blame game”.  I can not tell you how disappointing it is to see how these state and federally funded programs are mismanaged and abused.  Sometimes I know I am idealistic in my thinking but maybe that really is the simple answer.  Why can’t we all just sit at a table and be honest and cut the bull shit bureaucracy out?  And I know that this post is somewhat murky, I really don’t want to say too much-have I already?

So….since this post was to be about my job let me say this:

I do love my job!  I am very lucky to have a great boss, a beautiful environment to work in, wonderful clients! Wonderful!  They all keep me going in an optimistic way; Craig & Maribeth, Barbara, John & Pat, Jane and the list goes on ! I do have an army of loving friends who are there for me always!  I am grateful to have this blog to point out the incredible things in life that we should all be thankful for! AND I do apologize that I have gone on and on for this one,  but I have been up all night with a pit in my stomach because I have to once again say to Alex that this bureau did not listen to us two years ago and are still saying no to simple requests that will help her succeed.  And the saddest part is that I know in my heart that they are just throwing blocks in the road to make it just a little bit harder!  Instead of working together to create ways that could help to enhance Alex’s life it has become an adversarial relationship.  Sad, very sad.

I am writing a letter to President Obama.  

Have a great day and PLEASE be nice to people today.  Be honest and move forward with integrity today.  Being honest and open with dignity isn’t always the easiest but it is the best way to live your life!

In Peace and Love

Always

Meir

Tom & Amy behind me on the right

Amy  and her husband Tom were very inspirational to me on the bike ride!  She is funny and kind and soooooo intelligent! He is funny and kind and soooooo intelligent!  Hmmmmmmm there is a theme going on there.  Yes that is right!  They are a wonderful couple who are facing Friedreich’s Ataxia together!  They finish each other’s sentences and know when to have fun, they would razz each other with the best of them but you just simply got this strong sense of camaraderie from them, you know when a couple just “gets it”!  They understand what true commitment means.  It’s not HOW much time you spend together it is the fact that whether or not you are together you are always on the same page.  I loved being around them as did everyone else on the ride!  People like that just pull you in with their wisdom and genuine kindness. 

Well, one of the phrases that  Amy and Tom used on more than one occasion was “TAKE THE LANE”.  What that meant on the ride according to Tom was that if you felt any insecurity or unmitigated FEAR out there on the road you were to yell……TAKE THE LANE.  

getting ready to "Take the Lane"

Then everyone around you would take up the whole lane of the road.  This was our “RIGHT” Amy said and that way we would slow the traffic.  NOW mind you, I was always the last person in the pack. So all of a sudden I would visualize the first car would of course run me over before they would realize that there was a whole pack of riders:-)!  But the sacrifice would be worth it for my new found friends!  I never had the misfortune of being run over but taking the lane certainly had a great effect and it worked!

So now I am home and things start to take on new meaning!  Some of the stuff I discovered in that amazing ride now gets turned into my ordinary everyday life struggles.  So, I realize that Take the lane also means that I can yell it out to myself when the going gets rough.  Now some are saying HOLY COW!  She must be muttering that phrase about a million times a day.  BUT I am not!  I am using the phrase very sparingly and of course only when needed!

carrying sam & aly with me always through life! There really is no other way to get by without learning to "Take the lane" in life!

But what I do realize on weeks like this one is that the phrase works so well in everyday life!  You know, we all face everyday life struggles……life, death, arguments with friends, illness, ignorance……the list goes on.  So this week I did it……I yelled to myself to TAKE THE LANE!  What that meant to me was I was going to muster up all my inner strength, I would realize that some things can not be changed and just have to be dealt with! That is the beauty of understanding the true meaning of perseverance.  So what I can not change this week, I will accept and what I accept this week will be because of my ability to “TAKE THE LANE!  So this one’s for everyone out there that has had a bad week, or a terrible week or even a horrendous week!  TAKE THE LANE with me and feel some empowerment.  If you feel like you are a bit afraid or uneasy, know you can pull from your inner strength and TAKE THAT LANE………..face your fears, overcome them and deal with life’s tragedy’s head on! Tom and Amy will be proud.  And so will I

In Peace and Love

Always,

Mary