lucky thirteen

November 28, 2006 was an unassuming Tuesday evening. Hayden was asleep, Dan was at work (he was on night shift at the time), and I was preparing myself a late dinner.

You may or may not have already heard this story, but that was the night the pediatric neurologist called to say that Dan and I would need to come in and speak with him (the very next day) about Hayden's test results. I immediately threw back at him, "your staff already told me the results came back when I called last week, and that everything you tested for was negative."

After he and I had a bit of a back and forth, during which time he never even apologized for the colossal miscommunication, he finally said, "Well, the important thing is that now we have an answer and we can talk about it tomorrow." Or something to that effect.

When I tell you it was like pulling fangs to get the name of whatever Hayden tested positive for, out of him, I am not even doing it justice. I almost got in an argument with the man-- I did not care if he was a medical professional, because he had our life-altering results in his hands.

So he finally said it. I did not know what he was talking about... this fragile x?

"Is he going to be OK?" I demanded. 

The answer he gave me: "There is no increase in hospitalization with people with fragile x." Then he proceeded to tell me that the primary difficulties are behavioral challenges and decision making.

OK... because to me, that sounds like nearly every child I have ever met in my entire life.

Then of course I did exactly what he told me not to, and went to the computer to look up this X thing.

Immediately, you will see one primary consistency with all search results: inherited intellectual disability.

This is not only how I learned it's a genetic disorder, as if that's not heartbreaking enough, but it was also confirmation that my son has something... not just developmental delays.

Our first exposure to the community of people affected by fragile x syndrome-- and the fact that there even was a community-- was via an extremely generous personal invite from The Clark Family to a FRAXA X Ball at New York City's Gotham Hall. On a rainy, cold, nasty evening we got all dressed up and schlepped into the city. We entered this overwhelming venue with ceilings so massive, one would look like they were watching an air show to take it all in. Dan & I sat quietly at our assigned table, and held hands underneath the draping tablecloth.

I do not remember what the presenters spoke about. I do not remember what items were up for silent auction. I do not remember how many people were at our table or who they were.

But one thing I do remember, is something that a mom sitting to our left told us. She said that prior to her son learning sign language, he would bang his head against the wall when he was hungry.

Hayden was about a year and half or so when we attended this X Ball. He was crawling, but not yet walking. He could communicate with a few signs, but was not yet talking. Her words terrified me that our own son's frustration level could increase one day, and the thought of him possibly hurting himself was too much for me to even think about.

My next exposure to the fragile x community was at the 11th International Fragile X Conference in St. Louis. I was there with my mom and spoke to no one, except my husband and my sister via panicked phone calls over what I was learning at said conference. All I remember about that conference is anxiety. Well that, and some t-shirt kiosk right in the mall attached to the hotel, where there was a shirt displayed that I actually asked to have removed.

It said, "I am we Todd did. I am sofa king we Todd did."

The first time I saw that "joke" was at a bar. Someone wrote it down on a napkin and told me to read it out loud. This was before I had Hayden, before I was married, and before I was even engaged. I was young, unaware, and I am beyond ashamed to admit... I think I even laughed.

Well, in St. Louis when I saw that stupid, pathetic t-shirt I felt overprotective and angry. I marched right up to this young man who was clearly clueless, and proceeded to explain what type of conference was currently in progress. And more importantly, who the people were who would see that t-shirt displayed. He did not hesitate and promptly removed it.

Since then I have joined Advocacy Day twice in Washington, Dan once, and we've also attended various other local day-conferences within driving distance. However I have had zero intention of going to another international conference. I knew when the 12th one in Detroit was held two years ago, I wanted to stay as far away from there as possible.

Over the years I have written some articles, began blogging, and we have participated in fundraising (by the way, Hayden's First Giving page for the NFXF's '$25 for 25 Years' raised the most money among all who participated in the campaign). Hayden has also been seen by many of the fragile x "celebrity" specialists-- from southern Jersey, up to Staten Island, and out to California.

But Dan and I had not yet attended an International Fragile X Conference together. We have never both been away from Hayden, at the same time, for more than one night.

Two days ago we returned from the National Fragile X Foundation's 13th International Fragile X Conference.

It was so exciting to even be able to point people out to Dan, to tell him, "they're the ones from Massachusetts who have a son a year older than H & he is so similar from the stories I read; and she's the one from Illinois with two kids, and her son is the one with that cool bike we considered for H; and that mom is the one with three kids who likes hip hop just like me; and that's the mom from Colorado who sent us the therapy swings; and she's the one who lives in PA who initially set up that TV interview," and, well... I could go on and on :-)

Thanks to the world of social media the facebook term "friend" has turned many, into just that. 
(Btw, before we even boarded the plane home, Dan joined)

I don't just feel like we attended this conference... I feel like we participated in it.

Between a photographer from the Foundation who paid me an unexpected, incredible compliment for something very brief I said (off-the-cuff) during a video from Advocacy Day; and another mom who approached me as she told her mom I was the one whose son met Buddy from Cake Boss; and a new friend who quoted me during a conference session she headed with two other amazing moms; and the larger-than-life-size poster of us on display next to the table for Our Fragile X World (visit www.ourfragilexworld.org to learn more); and when Robert Miller himself took a picture of Dan & I in front of said poster; and being brave enough to complete unscripted/ unrehearsed parent interviews for an upcoming video; and actually contributing during the mother's lunch workshop; and showing off the very special, personalized FX jewelry handmade for me by Aloha Mom Creations... and anything else which was the complete opposite of me being a hermit crab.

I loved our conversations with 'heavy hitters' such as Dr. Hagerman, Louise Gane, Tracy Stackhouse, Sarah Scharfenaker, Ted Brown, Vicki Sudhalter, Katie Clapp, Linda Sorensen, plus an Editor from the Quarterly who encouraged me to write more... and last but not least, the opportunity to speak with a mom of a boy with fragile x from Europe who I remembered from the St. Louis conference.

Then there was the 'Mission to Lars' screening, so beyond incredible, that it officially bumped my previously all-time favorite movie 'Life is Beautiful' to second place... (www.missiontolars.com)

And the Marlins game when 13 year old Glenn Sheldon, who has fragile x, won the opportunity to throw first pitch... and did so, amazingly...

Plus a ton of other memorable moments in between... too many to list. Although the automatic window shades in the hotel room and gorgeous harbor view, deserve honorable mention as well. 

I am sad that we had to depart early on Saturday, but I definitely needed the day yesterday to prepare Hayden for a new camp program which began today (different post to come). The only way was to leave when we did, and have the one day in between.

One year ago, for example, if the Fragile X Association of New Jersey had announced a get-together for families, I would have respectfully declined without even thinking twice. However, I am grateful there is an upcoming event in August during which we will have the opportunity to reconnect with some of these positively inspiring, amazing people.

Me and Dan are so blessed and fortunate to have such supportive families from both sides... and we can now say we have a third family of support among the entire fragile x community as well.
I wonder if most of them even realize just how much they strengthen this mom every single day.

Well, they will now.

i scream, you scream, we all scream, for ...

Yes, anyone who really knows Hayden knows this entry can't possibly be about him. And you are correct :)

However, my favorite parental FX post of the day, from a Colorado mom (names removed for privacy):

"One really busy Saturday our NONVERBAL son got 4 different people to take him for ice cream by signing 'ice cream'. He might've been been saying that he liked ice cream, but we all separately assumed he was asking for ice cream and took him to Cold Stone. Only later did we realize that [my husband], one of our daughters, a care provider and I had all taken him on the same day."

Excellent!

Hypothetically speaking, this is definitely something Hayden would do to get his hands on more Dunkin' Donuts

this one's for you, c.s.

There are fb 'rooms' (a.k.a. pages) for people in the FX community. they are closed groups visible by invite only, for our own privacy. But without using any names... there is a beautiful, beautiful post I feel compelled to share...

A mom of 22 year old son with FX, posted about their new neighbors who have two 8-year-old girls. Her son helped them get their scooter back from their older brother who was... you know, being an older brother. So later on the two girls thanked her son & asked the mom why he sometimes flaps his hands when he gets excited, & acts differently. The mom told them he has fragile x. So one of the girls said, "What's that? Something that makes him be nice & help people?"

I cried when I read that.

a little something for 'awareneXs' day

a gene mutation may be a good thing

On Friday, July 6, ABC aired an episode of 20/20 about Heaven.

Barbara Walters spoke about what people believe it is, what people believe it looks like, and what are the perspectives of those we may tend to listen to?

She speaks with everyone from the Dalai Lama, to scientists, to people who have flat-lined and been brought back, and many other people in between. She also discusses the findings of many doctors and scientists, and what they believe.

During an interview with a former geneticist for the National Institute of Health, the doctor explained how they conducted a study to learn whether or not spirituality is something we are possibly genetically predisposed to. 

They asked study participants questions such as, "Do you feel some connection to other parts of the universe?"

And, "Do you believe in miracles?"

They found that everybody has some level of spirituality, but some people are simply higher on that scale. So Barbara Walters dug a little further, to explore how spirituality might actually be a personality trait encoded in our genes.

The geneticist tested the DNA from study participants, and those who scored highest had a mutation of at least one gene that seemed to affect their level of spirituality.

In his words, "This particular gene controls certain chemicals in the brain, and those chemicals affect how consciousness works. They affect the way that our feelings react to events around us."

Barbara Walters also spoke with a scientist from the Thomas Jefferson University, who studied people while they were deep in prayer. By referring to brain imaging, this man was able to prove that people can go to a place with less of a sense of space and time, and more of a nirvana.

The scientist formerly from NIH also added, "Nature has given us the capacity to be spiritual otherwise the gene would not have survived evolution. It also tells us that spirituality may be simpler, or more difficult, for some people."
 
He said it’s a ‘belief-that-there’s-something-else-out-there’ gene.

Barbara Walters concluded, whether or not you believe in a G-d or a heaven we still need spirituality to make our experiences complete.

I know this was not a discussion about the FMR1 gene. But I also know that, technically, it could be...

If a gene mutation can be a good thing, then I'll take it. The idea makes more sense to me to consider the likelihood that a difference can be a strength, vs a weakness. 

And I am happier at the mere thought, that just maybe, me and my son are genetically predisposed to be more spiritual than I give us credit for... more reason to be at peace than I've allowed myself to realize... and more reason to hope there is something else out there in his future.