Clouds, May 2010

Clouds, May 2010

Monday, July 8, 2019

Seasonal Recap

Before my blog skips two seasons entirely, I'm here to recap spring...

A small but mighty group of three NJ constituents attended NFXF Advocacy Day at the end of February-- and they sure made a significant difference!

New Jersey was represented by two moms and a seasoned self advocate. One of the moms recently moved out of state but advocated on behalf of NJ this year because luckily there was already good representation from her new home state. Very grateful she was able to join them!

Historically, former Rep. Greg Harper was one of the biggest champions on Capitol Hill for the fragile x community. Not only a father to a son with fxs, but also a founding member of the Fragile X Caucus. The Caucus is a group of Congress members who pursue common legislative objectives. The FX Caucus aims to:
Increase awareness of public & private efforts underway, to treat patients with fx and
Develop therapies and

Identify ways that Congress and federal departments can better serve families impacted by fx

Since retiring in January the role Harper filled as co-chair, alongside Rep. Elliot Engel (NY), had been vacant.

One of the NJ meetings on Capitol Hill was with Rep. Chris Smith, and their visit had wonderfully significant results! Together, this small but mighty group representing NJ successfully helped secure the co-chair vacancy of the Congressional Fragile X Caucus!

An added bonus to this year's Advocacy Day Event-- versus other years, when we've met with staff members from our legislator's office-- turned into this: 
This is the three 2019 NFXF Advocacy Day participants representing NJ, enjoying a photo opp with Senator Cory Booker!

I can't really top that but I will say, fast forward to April, & I attended the NFXF Leadership Summit in Orlando. The meetings took place at the location of the upcoming 2020 International FX Conference. While there was a much smaller number of Chapter Leaders in attendance versus previous years, it was as always powerfully motivating to be together. And if you look carefully you'll notice the guest speaker-- the tall gentleman in the suit, on the end of the back row of the photograph-- former Congressman Harper.

On the heels of a personally trying winter for my family, as Dan & I were faced with the very unexpected curveball of his position being eliminated at his employer of roughly 14 years-- following the last couple of years having been promoted to a manager role-- my trip to Orlando felt like a reboot even despite my usual travel anxiety.

Little did I know it was only the calm before an even bigger storm. Now that Fragile X Awareness Month has begun, I am going to share about our latest challenge with Hayden. I've decided that in the interest of maintaining control over what is shared, when it's shared & how it's shared... it's a perspective that I want to come from me and no one else. But it is also an incredible example of why the structure of the NFXF is so crucial for appropriately supporting our loved ones living with fragile x. Reaching far beyond research to ensure there is adequate awareness, education, advocacy and resources to not only help us through daily challenges... but guide us moving forward.

To be continued...

Friday, February 1, 2019

Safe and Happy

The is the House Chamber where our Members of Congress debate and pass laws.

I share this to think about Capitol Hill and our government, and to visualize the people who sit in those seats and vote on legislation.
Monday, February 25th and Tuesday, February 26th is this year's annual NFXF Advocacy Day. As of January 2019, about twenty percent of the House members are new which means they do not know you and they do not know your story.

Further important to consider is the National Institutes of Health. Yes, that NIH-- the one under the Department of Human Health and Services which is devoted to medical research. In addition we all know Congress established the Centers for Disease Control and therefore they influence regulation of prevention, health promotion and preparedness. What if you were offered the opportunity to help protect NIH and CDC funding?

Any person with an intellectual and/or developmental disability is deserving of quality of life. The opportunity to help restore DDD funding, and push for policies that will provide such opportunity, is crucial for this population and they need our voices to help.

When I experienced my first Advocacy Day many years before I became a CSN volunteer with the NFXF (and even more years before I became NJ Chapter Leader), I did not have beginner's luck. My first year on Capitol Hill I was one of only two constituents from NJ and I seriously felt like I didn't know what the hell I was doing. However... I also learned just how crucial my voice really is and thank goodness the experience only motivated me to return. In the years that followed I witnessed firsthand that NJ typically had quite the show of support! With closer to an average of at least ten NJ advocates, year after year we were a strong group among the 150 or so from around the country. All of us there for a common cause.

Unfortunately this year, so far NFXF AD registration from NJ has dramatically declined. Some families who were previously very involved happened to move out of state... other households (besides mine) have their own extenuating circumstances... and so forth. But one thing that hasn't changed--- we are all anxious about ensuring our loved ones have the best future possible.

Every year that I/we have been to DC, or members of my family have participated in Advocacy Day, my favorite part is when I explain to Hayden why. It's a bit much for me to try and tell him that we join others from around the nation to increase the probability of legal protections being in favor of our children, while also helping to improve the lives of others with intellectual and/or developmental disabilities.
So instead I simply say, "We talk to people to help make sure you will be able to get what you need to have a safe and happy life."

When constituents show up in the offices of our legislators they are the voices from home that are the loudest. Thankfully (to say the least) the NFXF offers us this opportunity to be heard.

You can register here and reserve your room via this link. The discounted room block is guaranteed until Monday February 4th.


Tuesday, January 29, 2019

eastcoast love story

Fresh into 2019 unexpected circumstances sort of forced us to clean out the spare bedroom, so at least one side of the room could once again function as a home office. The timing may seem almost trendy in the wake of tidy Marie Kondo followers, but in our household that's only a coincidence.  Urgency aside, there has been a tiny bit of a positive ripple effect-- one such benefit that other areas of our home have been de-cluttered and cleaned out as well.

Somewhere along the way in either a bag or drawer of cards, invitations, and photos-- (I have a paper saving problem but I'm getting better--) I came across an envelope from my late maternal grandmother. I eagerly reopened it and inside were pages from a newsletter. They didn't look familiar and I had no recollection of why she would have sent them to me. I skimmed it and saw "Fire Safety Program"... "Card Room"... "Meet Your Neighbors"... and then in bold "Gert and Fred Rosner". The next two and a half columns are a mini biography-- up to the last part of the newsletter boasting about The Atriums being the only condos in the town of Palm Beach to receive the prestigious landscaping recognition of a Certified Florida Yard... apparently awarded by the University of Florida and a Palm Beach County Co-op or something (in case you were wondering).

I went back a page and read from the top.

The editor begins, "Are you ever curious how your neighbors chose to live at the Atriums? That's the first question I asked the friendly couple who live at 4H South." According to the newsletter, in 1979 my grandparents had first lived at someplace called the Southgate. They no doubt traveled to Florida seasonally-- that was roughly six years ahead of the devastating house fire that would claim their Maywood Avenue residence in NJ-- the Victorian home that my mother and her three siblings grew up in, which my grandfather's physician practice was also attached to. Furthermore, they kept a NJ residence for many years after the fire when they moved into an apartment.

Back then The (new) Atriums had model units-- the editor mentions my grandparents had been watching the progress of the building when they walked the beach each day. The article says, "After looking at the model bedroom in the North building Fred said, 'Gert you can't come in here, you won't come out!' And thus began life at the Atriums for Dr. and Mrs. Rosner." Some fifteen years later they became year-round residents in the South building. And it really was a beautiful master suite, by the way-- it was on the far end of the condo practically in its own wing.

Next is when the editor gives a little more back story. She wrote, "I'm always curious about where people grew up and how they met. How does a girl from a farm in Queens meet a Brooklyn boy?"
[Farm in Queens?] "Well one summer on the beach at Rockaway, NY sat a very curious third year medical student reading and studying" (and she repeats) "reading and studying". To loosely paraphrase the next part (because I think the editor used a bit too much creative license)... there sat a young lady deciding which boyfriend to choose (supposedly). They went rollerskating on their first date-- something I do not remember anyone ever telling me-- and they married in 1942. The article quotes one of my grandparents saying, "Before that we didn't live together. Nobody did that then." (My money's on Grandma Gert having chimed that in.)

The article continues to say that when the war came Grandma Gert traveled with Poppy for a year and a half before he went overseas. His orders were to report to NOPE, Louisiana but he couldn't find the city on the map-- which turned out to be an acronym for the New Orleans Port of Embarkation. (That's life before computers & Google I guess.) So my grandma had to take a train with my then-infant Aunt to return to New York. There is a side mention of my grandma having made formula and sterilized the bottles, only to see the kind porter put the bottles on ice in a pail he had just used to wash the floors. But "she and her child survived". The editor quotes one of my grandparents, "We've had experiences people don't know." I can imagine. I also remember after Hayden was born, my grandmother saying in conversation that back then breastfeeding "wasn't in fashion".

The article goes on to share that my grandparents eventually settled in Maywood, NJ where Poppy practiced general medicine until 1988. He was a 50+ year founding member of the Maywood Rotary Chapter, served as President, established the local blood bank, and received a medal for his distinguished service. After delivering his 1,000th baby (that I remember him telling me) he began reducing his hours until retiring permanently-- supposedly less than a decade before the newsletter was published. I can not recall for sure but that would mean he was still practicing up until my college years. Interesting!

Then the newsletter gives a little background about Grandma... "In 1959 while visiting a neighbor Gert noticed a painting on china." Short story shorter one day a week she had the children stay at school for lunch and Grandma Gert painted at a studio that was a former chicken coop apparently, kept warm by a pot belly stove. [Didn't realize students usually came home for lunch.]

As anyone who knew my grandmother knows, the china painting continued. Grandpa converted part of the basement into a studio. The article says she would paint until 1 or 2 in the morning! Lastly, the editor mentions my grandparent's love of travel... listing some of their trips including the Orient, Australia, New Zealand, Africa, South America, Panama Canal, Cuba, Europe, Canada, Israel and Scandanavia... none of which (the editor notes) could surpass the enjoyment of Coney Island's famous Nathan's hot dogs. Just before the end of the column, the article mentions their first cruise was aboard the "France" ship to the Caribbean. Grandma Gert said it was "Glamorous" and Poppy said, "Fantastic." But they both agreed if they had to pin down to the very best trip, it was Alaska for their 60th Wedding Anniversary. With 19 of us-- including Dan (we were engaged in November 2001 and the cruise was in July of 2002). We actually bought our wedding bands on that trip, in Juneau.

The concluding sentences explain why Grandma Gert likely sent me a copy of the February 2003 publication...
"What stands out the most is their strong family ties. Having raised four children they agree 'we enjoyed every bit of it.' As granddaughter Cara put it, 'It's not just your soup... your rugelach and stuffing are the best tastes in the world'." I do not remember saying that but I do not disagree!

"Future plans?" the article concludes, "Maybe a river cruise, but right now 3400 is just fine." The editor quotes them, "We made it to the beach."

I miss my grandparents all the time (all four of them). But the envelope was a wonderful little piece of history to stumble upon... and the timing noteworthy itself. Last month would have been Poppy's 102nd birthday, this month is the 14th anniversary of his passing, and next month would be Grandma's 98th They live on in our hearts and our homes-- particularly special that we all have some of Grandma's handpainted china pieces. And my guy of course, who shares a unique genetic link with Poppy. I will always be grateful at least my grandfather knew we had a baby on the way before he passed. I remember telling him the boy name and the girl name we chose, and he loved them both. But I feel luckiest that Hayden was the first to make Grandma a Great Grandma, that he did get to know her, and that he remembers GGG.

They eventually relocated to Maine near my Aunt, and my Aunt and Uncle in Cumberland County. Now having read this newsletter, any time we take Hayden back up there and I see one of Grandma's handpainted plaques on the door of my uncle's beach cottage (approximately a 40-minute drive from their year-round home), I'll hear their voices in my mind. We made it to the beach.