Clouds, May 2010

Clouds, May 2010

Tuesday, November 20, 2012

when it's my birthday, I'll beg if I want to

This week I am selfishly using my own blog about my son, for my birthday wish. Because in seven days I want everyone to participate in the first ever, Giving Tuesday.

This Tuesday, November 27th will begin a movement to create a national day of giving quite simply called Giving Tuesday. This effort is the first of its kind and aimed to sort of “nudge society past consumerism and towards community giving”… borrowing the words of an online article I saw, “A Perfect Antidote to Black Friday”.

Since the 27th happens to be only three days removed from my 27th birthday (or 37th, but who’s counting)… this is my wish. And if I may be so bold as to not-so-subtly hint at a suggestion… or two… your choice:

Both the National Fragile X Foundation ( and the FRAXA Research Foundation ( are tireless in their efforts to help and support the community people of affected by Fragile X. So this Tuesday we should support them, too.

Around the holidays the sheer number of charities promoting fundraising can leave us feeling almost helpless, as we lack the resources to respond to each one, and narrowing the list feels overwhelming. Not to mention this season of giving our hearts are with countless number of people who have been affected by hurricane Sandy, and indefinitely they will be kept in the forefront of our minds.

I am a born & raised Jersey girl and remain a resident today. Our home may appear unscathed but our hearts are not. We grew up spending the majority of our summers in Point Pleasant on our boat with friends and family. The first time my son saw the ocean was in Spring Lake, and the first real boardwalk he ever stepped foot on, was Jenkinsons. The original has been washed away but we will rebuild and we will move forward. And the latter is precisely what the NFXF wants us to focus on.

Hayden did not choose to be born with Fragile X Syndrome, any more than the homes affected by Sandy were chosen to be built in its path. He did not choose to be born with lifelong challenges, any more than people chose to have to rebuild their lives. And just like a hurricane and its aftermath, Fragile X continues to present us with the opportunity to come together for a common cause.

Hayden is like so many other children around the globe who have intellectual disabilities, sensory processing disorder, as well as speech and motor challenges. About a third of them are affected by autism as well. And this is hardly inclusive of the challenges they face every day.

For the first time in history, we— the community of people affected by Fragile X— are closer than ever to effective treatment options. Options specifically indicated for Fragile X Syndrome, and possibly even a cure. With ongoing clinical trials, the hope truly is on the horizon.

I hate that I have to worry about Hayden’s future because I’d rather worry about him becoming a teenager, and making ridiculous decisions. I wish I didn't have to worry about his safety, because I’d rather worry about him getting his driver’s license. I don’t want to worry about supporting him because I’d rather worry about his financial independence.

I want my kid to grow up, date the wrong person, mess up when he parallel parks... then one day, land some sort of cookie-cutter job in corporate America, quit it, & pursue something unrealistic... then announce his sudden engagement, plan a wedding on an accelerated timeline, bicker with me over a seating chart... and one day, give me a wrinkled copy of his first child's first school picture because my grandkid crumpled it. Ultimately I wish my Hayden could become a grown man with his own family to take care of, while having to constantly tell his forgetful, aging mother, "I already told you that, Mom!"

The stages in life that most people expect for their child(ren), are not ones we can assume for ours. This is why your help matters, and I am
so grateful you have taken time out of your own day to hear me out. You have given me hope, & now you can pass it on to Hayden:

Please keep the momentum going... we have seven days to spread the word! One week from today on November 27th  together we will witness the first ever nationwide Giving Tuesday. I hope you participate by visiting and/or ... because your dollar will help turn that hope on the horizon into a reality.