We’re too close to stop here!

We’re too close to stop here!

Last Friday, Caleb and I were on our way to Canton, IL…to Holly’s house. We were a day late for the start of the visit due to severe flooding in that area but we were there in plenty of time for the really big event…the 10th Annual Walk for Fragile X Syndrome and 3rd Annual Fragile X 5K!

Caleb just loves Holly, Holly’s house, Allison, Parker and Daisy…we hear a lot about them from him…the boy does have excellent tastes, just like his mama! He had no idea what was planned for Saturday, and I had no idea how he would handle the crowd and new location. He did so very awesome!

He spent hours and hours in the gym in the bouncy house or playing basketball with whoever he could trick into catching the ball (a little hint, if C ever throws you the ball…please be prepared for a game of catch that will last as long as your shoulder holds out…) There are potentially several Cantonites? Cantonians? who were in shoulder slings the following day. While these good citizens provided free childcare, I was able to walk around and chat with all of the amazing people that had come from near and far to support the fragile X community. The one and only time Caleb needed me, he came out of the gym and found me to get the help he needed (really, he only needed “A dollar? Rootbeer?”) then he went right back to playing.

This event has raised over $30,000. Can you believe that?? THIRTY THOUSAND DOLLARS! Holly was thrilled, everyone was so very excited…but I’m a greedy girl…I asked Holly what her record was and she told me $32,000. Say what? We are NOT going to get that close to the best walk total EVER and just stop.

SOOOOOOO….donations will be accepted through May as they are every year. Don’t you want to be a part of the best walk ever?? Please visit the fundraising page to push us over the top! We need to hit at least $13,000 on this page to push us over…whoever pushes us over $15,000 will get a prize. I’ll have to think about what I’ll do…it might be fragile X related, it might be some autographed Caleb art, hmmm…I might even be able to send you some drunk gummies (except that might be illegal *ahem* so maybe not…)…I’ll take requests/suggestions for a prize. So COME ON!

Join all these amazing people who walked and the equally amazing people who have already donated to make this Holly’s best walk ever!

 Go donate now! Walk for FX

How can you possible say no to this face??

Quick, catch!

Today.

Today.

I’ve written several blogs already today and deleted every one of them. Blogs filled with fear, hurt and anger…oh, yes…the anger.

But, today, I needed something to lift me up above those feelings. I found this photo I took a couple of weeks ago and never got around to sharing.

Today I needed a reminder that there are butterflies, rainbows and happiness still to come. The sun will shine again. I will have a sore shoulder from throwing Caleb’s ball up onto our roof for him over and over again. I will sit on a grassy hill at Castle Island and eat ice cream with him and Eric again.

Also, baseball…there is baseball to come. Next Tuesday, in fact. If all goes smoothly Caleb will step onto the field at Fenway Park alongside Eric and our friend Denise Devine and they will be recognized for their role in making Fragile X Awareness Day a reality in Massachusetts.

On a day when my thoughts are dark and scrambled, when everything just feels wrong…excitement for the future takes hold again. Life is so very strange, isn’t it?

Fun and Fundraising!

Fun and Fundraising!

A local business has offered to host a fundraising event for the National Fragile X Foundation! Eric and I will be going (YAY for grown up time!) and we’d LOVE to see some other families and friends there too. 25% of the proceeds will benefit the NFXF!

Boston View @ Kingston Station 6pm-8pm by Allan Dygon

Please join “Painteria” for a fundraising event on Monday, April 29, at the Kingston Station restaurant at 6pm-8pm. You will be provided with a canvas, easel, paint, brushes and aprons. Along with Allan Dygon, who is a local artist, he will guide you step-by-step through the process of creating a beautiful artwork. For more details please check out the website: www.thepainteria.com

Team Fragile X fundraiser – A Contest!

Team Fragile X fundraiser – A Contest!

If you missed my earlier post (Team Fragile X – A Challenge), or that humungous fundraising link to the left, or that pole dancing photo on Facebook, there is a fundraiser going on to benefit the Annual Fund for the National Fragile X Foundation! Just to clear up any possible confusion…I started the fundraiser, because someone had to, but this is a TEAM event. We need as many family members and friends as possible to join the team and help raise money. Any money you raise on your page goes to the team total but YOU get credit for your hard work on your own page. OK? Cool, eh?

SO. We currently have 10 members on the team which is very cool and I LOVE them for joining. I just think we can do better. The more people who join, who spread the word about what this means to their family, the better because, let’s be honest…your Great Aunt Sue doesn’t want to donate money to me…she wants to donate money to you and your adorable kid(s)! Your friends and family are MUCH more likely to donate if they know the person (YOU) asking. That’s why it’s important to join the team. I don’t think I need to tell you why it’s important to donate money, you already know!

Now, about that contest…it’s pretty simple…whichever team member1 who raises the most money between now and 12:00 PM EST on December 7th gets what’s in this box:

Pretty cool, eh? What’s inside is really, really, super cool…

You can’t buy one of these stainless steel, NFXF travel mugs anywhere at the moment! Some day you will but until then the ONLY way to get this…is to win it. So…go join the team and raise some dough!

Instructions on how to join Team Fragile X can be found here: Team Fragile X

  1. Excluding me! []
Team Fragile X – A Challenge

Team Fragile X – A Challenge

It is the time of year for counting our blessings, for taking a look at our lives and giving thanks for all of the amazing things we have in this life both big and small. I’ve been looking hard at my everyday life for the awesomeness I might overlook on a day to day basis and I am loving what I see. A good number of my Facebook friends have been doing the same thing and I’ve enjoyed seeing what they have to share. It occurred to me that one of the things I am most thankful for…are all the people who have come into my life in the last two years.

Two years ago, Eric and I attended our first International Fragile X Conference. We went not expecting to get anything from it and we came back completely transformed. We met the most amazing, motivated, passionate, loving people…people who made us want to be more like them. And with the support of the National Fragile X Foundation, we’re getting there.

The foundation is just kicking off their Annual Fund fundraising project, this is the primary source of funds for all of the foundation’s activities, and it just happens to correspond with both Giving Tuesday (you can read about that here.) and the Firefox challenge on Crowdrise.

 The Challenge begins at 8:00:00 AM Eastern on November 19, 2012, and ends at 11:59:59 PM Eastern on January 10, 2013.

The three (3) fundraisers that raise the greatest, next greatest and third greatest amounts of money on a CrowdRise fundraising page for their benefiting charity during the Challenge Period, and are in compliance with these Terms and Conditions and the CrowdRise T&C, will earn the Challenge Grants.

The First Place Challenge Grant is $50,000, the Second Place Challenge Grant is $30,000 and the Third Place Challenge Grant is $20,000.

There is no way I could win that challenge on my own…but I think we as a community can. After talking with the foundation, I set up Team Fragile X on Crowdrise and now I’m asking YOU to join that team. You can set up your own page and push it out to your friends and families and take an active roll in giving back.

Detailed instructions on how to join Team Fragile X: Team Fragile X

Or if you just want to donate, go right to the Team Fragile X page: Team Fragile X Crowdrise/Firefox Challenge Page.

Let’s go team!

2012 Connecticut Fragile X Conference – October 20, 2012

In case anyone hasn’t seen this, the awesome and amazing Tammy and Andy Selinger have announced their annual conference topic and date!

The topic is Understanding and Treating Behavioral Issues Throughout the Lifespan and will be presented by the equally awesome and amazing Marcia Braden, Ph.D. The conference is scheduled for Saturday, October 20, 2012.

You can find out more details on the NFXF webpage:  www.fragilex.org/2012/links-support-network/connecticut/ct-fragile-x-educational-conference/

Also, Eric and I will be there with NFXF merchandise to sell onsite!

Hopefully we will see you there!

PS – We think C’s teacher will be coming…first time EVER someone from our district has attended a fragile X conference!! Fingers crossed!

 

I need another vacation!

We are back home from the 13th International Fragile X Conference in Miami. I was so ridiculously anxious about the trip in advance because I only had one other International Conference experience to refer to which was my first in Detroit. This trip was so, so different.

In Detroit I was a new parent. I had not ever met most of the people at the conference. I’d heard of them, I had exchanged Facebook messages with some but many of them I had not one single clue about. I was, at that time, taking my first tentative steps out into the fragile X community. This time I came as a LINKS leader, I came with hundreds of fragile X parents as friends on Facebook. I knew their kids’ names, where they had vacationed, their pets, their interests and their pet peeves. We had a foundation to build on this time so it was not nearly as hard to reach out and talk to new people.

In Detroit, I attended every possible session, there was not a single moment of my day when I wasn’t supposed to be somewhere taking notes. This time, I went to 3 sessions (4 if you count the 1 I was a presenter for.) I KNOW! I’m at a conference with the world’s leading fragile X experts and what do I do? I hang out at a table in the lobby selling t-shirts and magnets. And I loved nearly every second of it.

I’d be lying if I said there weren’t times when I felt overwhelmed and wanted desperately to crawl into a hole. Then I’d walk away from the crowd for a bit, take a deep breath and just look around. The International Conference is just as much about the people as it is about the information and you need to give yourself time to enjoy the people or you are missing a huge piece of the conference…the human connection.

Let me share a few stories…in Detroit I attended the male panel, it was a group of young men who presented slides describing their schooling and their current lives. They talked about the things that worked for them and helped them learn and grow and they talked about the things that upset them and hold them back. They took questions and answered them. That was a revelation to me.

I approached one of the moms after the session and nearly begged her to tell me how to help my son become like hers…it was the first time I was able to imagine a happy, productive life for my son in a larger community and it’s a gift that literally changed my life. It changed my entire view of living with fragile X. I attended this session again in Miami and it never gets any less powerful. I will never miss this session at any conference.

In Miami, I had more time to enjoy the people. I walked around the exhibitor tables and talked to people. I met a couple of amazing men who live at the Stewart Home School in Kentucky. One of the most terrifying things about fragile X, for me, is what happens when I’m gone? I have spent a lot of nights worrying about this. I won’t lie, thinking about sending my son to live anywhere is torture…thinking about sending him hours and hours away? Not a possibility. Never going to happen. Then I met David and Chuck. I was absolutely in love with them. They told me about the school in such a way that made it very clear that they love it and are thriving there. I even found myself asking how far from an airport they were. Who knows what the future will bring but I can see this as an option at some point. A place for Caleb to ride horses or take yoga or study science and reading…a place to call home.

Also in Miami I had a chance to reconnect with friends. Sure, I could (and do) spend plenty of time skyping, texting or emailing them and even talking on the phone at times but there is something about sitting around a coffee table loaded down with pizza and drunk gummies while we catch up that just can’t be put into words. Having a chance to jump fences and wade knee deep into the ocean under the moon, to pole dance for the Foundation staff, to walk onto the field at the start of a major league baseball game with the most amazing and inspirational people I’ve ever met, to teach my ridiculous “Popcorn Dance” to Tracy (of Tracy & Mouse!!!)…none of this would be possible if I had skipped the conference.

So, while I certainly appreciate the fact that many people go with a plan to take notes until they drop and squeeze every idea and tip possible from the amazing faculty, I don’t want anyone to ever lose sight of the fact that though the “book learning” portion is important…you *can* do that at home. You can read books and scientific journals to your heart’s content…and still miss what makes this truly so amazing in my opinion…it’s the people.

 

I have a confession.

I am super, super, super excited about Miami. That’s not much of a confession, is it? Bear with me…you should know by now that it takes me a while to get to the point…when I have a point, that is. I think I do have one this time but you’ll have to read to the end to find out1.

Our experience at the Detroit conference in 2010 was so amazing and it brought us fully into the fold of the fragile X community. It was a huge turning point for Eric and I both. I wasn’t as graceful in my transition as Eric but I’ve come around to the point where a whole lot of “will never”s and “over my dead body”s have morphed into realities…the one that hasn’t yet…is now in the realm of “possibly, maybe, OK but give me a little bit longer?”

OK, now we get to the confession part…Detroit was pretty overwhelming for me emotionally and I’m getting really, really, really anxious about Miami. On the one hand, I’m way more prepared for the conference. I know what to expect and I have some amazing IRL friends who will be there this time. I have a place in the community now, I don’t feel like I’m on the edges waiting nervously for someone to say, “Oh, HI! I’m so happy you’re here!”

But.

Writing this blog makes me feel naked. Only a very few people in Detroit were able to connect my actual being to this…this…insanity. I outed myself last year because I decided it was time to own my story. It didn’t seem fair for me to preach connectedness and community and friendship when I was still hiding so much of myself. After so carefully keeping our faces and names and location hidden I said, “What’s the worst that could happen?” and blew the whole thing up. Probably after a couple glasses of Riesling.

So.

Now there’s a whole bunch of new people who I am absolutely, over-the-moon, excited to meet and this time they actually know who I am and that I want to meet them so I’m not a creeper in the corner trying to make eye contact in a non-stalkerish manner while I silently stalk them.  That should make it easier, right? But…it kinda makes it worse.

Now I’m consumed with a whole different set of anxieties…the main one is this…you guys are all so2 cool. I am in awe of your stories, your resilience, your determination to make things happen…I feel unworthy. I feel like you’ll be disappointed when you meet me and see that I really am just a dorky stalker type.

One of my friends (KQ) keeps referring to the “cool kids club” which at first made me sigh and dream of the lost days of my high school popularity (HA! Fellow KHSers will get this joke, as soon as they figure out who the fuck I am) and wish I could be one of them. Then she gave me a “Duh!” look and told me she was talking about my friends…and me. Which made me laugh, then blush, then mumble awkwardly3 and finally…puke…because I am so not a “cool” kid. I’ve never been a cool kid.

I’ve always been the quiet one sitting smack in the middle of the room trying desperately to escape the attention of the cool kids in the back and the teacher at the front. I’m4 shy when meeting new people. I think people maybe forget sometimes that just because I don’t throw up on your shoes5, doesn’t mean I’m not anxious. I’ve been told more than once I’m intimidating, people are afraid to approach me because I’m so aloof but that is alllllll anxiety. I don’t bite, I won’t be mean to you, I’m sure that I want to meet you6 even.

I remember in Detroit in 2010 I really, really, really wanted to meet Kristie (Life with My X Men, Kristie). The final night of the conference, at the banquet, I finally saw her. It nearly killed me to approach her and introduce myself and after getting a photo with her I ran7 back to my table and sat there staring at my husband with huge eyes, shaking. It was that hard.

I know I promised you a point but I don’t really remember what my point was going to be anymore except maybe that I’m way more like you than you probably expect. We probably have very similar insecurities and very similar dialogs running in our heads8. I am going to try to be less awkward and be more…crap…I don’t even know what my options are though drunk is sounding pretty good right now *sigh*

 

  1. TEASER! []
  2. FUCKING []
  3. I do everything awkwardly, you will see. []
  4. very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very []
  5. I have not done this since my 21st birthday, I swear []
  6. I typed meat and did not catch it until the 3rd review. Let us be clear, I will not meat you, that is another promise! []
  7. awkwardly []
  8. That is meant to be comforting, BTW, not scary. []

It’s not too late!

I posted this a while ago, Excitement and Disappointment, trying to raise additional money for the NFXF’s scholarship fund to send MORE families to the July conference. I received a stack of notices from the Foundation letting me know that some of you even donated money in my name which made me cry, you guys are the best.

I’m so excited to share an update! Based on some cancellations and the money that was donated, we are really, really, ridiculously close to offering a scholarship to everyone who asked. Given where we started, with the Foundation heartbroken over having to say no and the disappointment the families who were told no faced, that’s pretty awesome.

What is *most* awesome, in my opinion, is that this money is coming from our OWN. It’s coming from moms & dads who may not be able to go themselves but want to help someone else, it’s coming from people who’ve been before and know what a huge difference attending will make to those who haven’t had the chance to go before, it’s coming from friends with no other connection to FX but love of one of us…see?? Awesome.

I just want to say that it’s not too late, there is still time to send a little something to the scholarship and help change a family’s life.

Add a note in the acknowledgement area directing the money to the scholarship fund!