One year ago tomorrow THIS happened:
Josh’s Mom (Karen),
Your Tweet got a reply!
@GDonaldsonCT @RyanKellyMusic @neilbyrne_CT @laursadurrant
@DeclanODonoghue
It’s World Down Syndrome Day ~ A RT for Josh, your biggest fan?
George Donaldson @GDonaldsonCT
Hey Josh Hello from Glasgow, hope ur having a good day
02:55 PM – 21 Mar 13
When I showed Josh this Tweet from George, he and I were jumping around with excitement!! ”George sent you a message” I kept exclaiming OVER and OVER, like a crazy woman! You have to know that none of the guys, that I have ever seen, have directly Tweeted to a fan (maybe they have and I just want to believe we meant something extra special to George). They will retweet, but I’ve never seen any of them REPLY to a Tweet! What a GREAT day it was on 3/21/2013! Josh and I both felt very, very special by George’s gesture!
THIS YEAR, on March 13th, 2014, George passed away suddenly and unexpectedly at the age of 46 (leaving behind his wife Carrie and his 13 year old daughter, Sarah) ~ the light of his life, as he would describe them!
George’s untimely death also left Josh (and mom) very saddened at the thought of never again getting to meet him in person, as we had so many times before. George was a class act with a heart and soul made of gold, always willing to spend that extra time needed to make Josh feel appreciated. The thought of never being in his presence again, never getting to experience his talent live and to never again be able to see and hear him on any new Celtic Thunder DVDs or CDs has been quite overwhelming to both of us! ~ (As you all know, if you follow Josh’s stories, Celtic Thunder DVDs and CDs are like GOLD to Josh!!)
What a difference a year can make! :( George brought us so much happiness and joy. I’m not at all convinced that their shows will ever be the same without The Big G there to wave at, wink at and high-five Josh, but we’ll keep an open mind! We do know, for sure, that he is entertaining everyone in heaven with that huge George Donaldson smile, lovely voice and his guitar!
There are remarkable things that happened to Josh this year, good and bad. He learned to grieve for someone he loved, someone who was a part of Josh’s daily routine for seven years, even if it were only through his TV and IPod!
Other than George’s passing, Josh has had a year of great strides in independent living, friendships, building vocational skills, and an all around good year filled with making us laugh and amazing us with something new nearly every day, as seen by the stories we share on his Facebook page, Just Joshin’ Ya!
As we reflect on the past year and prepare to celebrate World Down Syndrome Day (tomorrow) 3/21/2014, it’s important to remember that the world and everything in it is in a constant state of flux. Things can certainly go from fantastic to really bad in a split second, like the day we learned of George’s passing; however, the reverse is true, as well. Things can go from really awful to just outrageously great in a short period of time.
Since the day Josh arrived on the scene nearly 19 years ago, for us, it has always been about being positive, not burning bridges that you might need to walk on someday, not approaching people with a finger in their face and demanding this or that for your kid, not letting other’s negative opinions sway your opinions, and most importantly remembering that it always takes way less energy to be POSITIVE.
That’s how we have chosen to live our lives with Josh. I’m not, in any way, saying we don’t have bad days, because we do, but WE ALWAYS look for the bright side, even in the crappy situations. Always looking at everyone’s point of view, putting yourself in their shoes……it just helps you gain perspective, looking at things from all angles. For us, there really isn’t any point, whatsoever, in putting people on the defensive by demanding what they will and won’t do regarding the services Josh needs/needed, since we will likely have to work with these people, as a TEAM, for what seems a lifetime.
My message to you on this WORLD DOWN SYNDROME DAY 2014 is to remain positive in everything you do during your advocacy. Remember to check in with your kid/loved one, no matter how old they are and ask them if they’re happy with what they’re doing, respect them enough to believe the answer they give you and not just assume that they “don’t really understand what we’re talking about”, take a step back when needed, refocus, and remain positive. It really and truly will make things so much easier!
We really have come so very far on the #DsRoad in our advocacy for and societal perceptions of people with developmental and intellectual disabilities. History proves this to be true. This, of course, doesn’t mean we don’t still have work to do, but we have come a long way from the day when Josh was born almost 19 years ago and referred to as a Mongoloid (see last year’s post 3/21/2013 for those details).
The world is EVER-CHANGING and it’s because WE, together, collectively, have used our positive energy to make changes. No matter how big or how small the changes are, it’s working, so never give up and KEEP MOVING FORWARD.
Happy WORLD DOWN SYNDROME DAY to each and every one of you who are driving on this road that we’re sharing! Whether you’ve paved the way before us, are traveling in our path, or making your own new road, we are doing this TOGETHER, striving to make one positive change at a time AS WE MOVE INTO ANOTHER YEAR on The Road.