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?

Harlem Shake It.

Harlem Shake It.

This morning as we were walking out the door to go to school, Caleb grabbed a green beach ball to bring with him. He will often grab a toy (or a bucket of toys) on his way out the door…he’s the king of picking his own transition items! Normally he will take whatever item(s) he has picked to the truck and then forget about them. This morning didn’t seem to be much different, he threw the ball into the truck, settled himself in his seat, belted himself in and we were off.

Mommy got engrossed with something ((Reminder to self, this is blog worthy…not the bit about me being on FB but the “something” I was engrossed in.)) on Facebook (Oh, nos! Call CPS, Mommy ignored her precious baby (and husband) this morning for 30 straight minutes!) ((Reminder to self, this is also blog worthy if I ever get so fucking bored with my own life that I decide I’m going to enter the Mommy Wars and spend my time judging how other people parent, as if I could get that lucky.)) ((Woah, is this an opinion coming on? Looks like it! Fuck the Mommy Wars, just parent your own kids. End of opinion.)) on the drive over and, despite it being a Monday, Caleb was not displaying any unusual anxiety. That’s what I call a good Monday!

When we arrived at school I heard Eric tell Caleb to “step over,” he had to go over the ball (and my lunch) on his way out of the truck. Instead of stepping over, he grabbed the beach ball and took off for class…no, seriously, took off! See?!


He ran to class, only pausing briefly on the stairs because Money had fallen behind while taking a million photos of the whole event. When he walked through the door ALL ON HIS OWN…SEE?!

His teacher said excitedly, “Oh, for me? We needed a St. Patrick’s Day ball!”

I then told her that the ball was one of the props from the Harlem Shake video we had done. After a moment of silence she said, “You did a…”

“Yep, when we were in D.C. we did a Harlem Shake video during training.”

After asking me to send her a link she said, looking at the assistant, “That might explain it.” and they both cracked up.

Apparently Caleb’s general education teacher demonstrated the Harlem Shake (and is a very good dancer) to the class and Caleb, who normally falls to the floor when they do something so crazy, IMITATED HER MOVES. And…since he was so into it…they have been playing the song in the smaller classroom and he’s been DANCING. Yes, they have video…they’re putting “something” together. OMG, I’m so excited to see my kid dance! I will totally share it as soon as I see it…in the meantime…if you haven’t seen the NFXF Harlem Shake as performed by the AWESOME FX advocates in DC…you gotta check this out…

My kid is kind of a big deal.

I mentioned that we took part in a video wayyyy back in 2011, the final version is now up and published on the web page for Boston Children’s Hospital’s Fragile X Syndrome Program but I neglected to share it! I’m so proud of how well Caleb did, he’s going to share this with his classmates soon. I wonder if they’ll be as impressed as they were by his dishwasher loading skills…

Do you really want a cure?

This isn’t one of those philosophical posts about how sweet and wonderful Monkey is just the way he is…and he is sweet and wonderful! If you don’t know that by now…uh, welcome to BasicallyFX, you must be new!

Anyway, this isn’t that. This is me seriously asking you, each and every one of you, DO YOU REALLY WANT A CURE? If the answer is no, that’s A-OK, I still like you! Lots! But you don’t have to finish reading this one…try this one instead, “The future is?”  It still makes me cry to remember that moment!

For the rest of you, the ones who stay up night after night with red eyes and a broken heart…the ones who read that question, “DO YOU REALLY WANT A CURE?” and thought, “Is this lady on fucking crack ((The answer to that is NO! I am not! Though many will not believe it and I cannot really blame them!))? WHO DOESN’T??”…this post is for you. I’m going to tell you a secret. It shouldn’t be a secret but it seems to be…there will be no cure…EVER…if you don’t step up. Period. There is no researcher or drug company in this world who can find a cure for fragile X without YOU.

Cures don’t just show up out of thin air…cures come from years and years and years of hard work, of study, of experimenting. That sort of thing…is expensive as hell. Seriously, it takes millions and millions of dollars to keep a lab running to find a drug worth investigating in a drug study. Where do those millions and millions of dollars come from? As amazing and wonderful and out of this world as FRAXA and the National Fragile X Foundation are…it’s not coming from them…yes, some is…but in the grand scheme of things, it’s pennies. Those millions and millions of dollars come from…the NIH, the CDC and, surprisingly, the DoD…what do those things have in common? Right, they’re all government agencies. That big, evil force that is stealing all our monies…yeah, that one. All that money coming out of your check that makes you gnash your teeth? That is our funding stream for the cure we so desperately want.

I’m not going to get into politics, mainly because, I like you all too much. I can guarantee we don’t agree on everything, even some things that I feel really, really passionate about. Things that seem so obvious to me that it makes me question the intelligence of anyone who doesn’t see that I’m right. And I don’t want that to come between us because, as I JUST finished telling Monkey’s classmates, we are all WAY MORE ALIKE than we are different. OK? In the ways that matter, we’re alike…we’re human, we hurt, we love, we want the best for our kids…and politics just muddies those waters. SO, NO POLITICS. But the fact remains…our cure is going to come from our tax money.

Does tax money get wasted? Yes! The how and why fall into politics and we are not going there! So! YES, money gets wasted but the fact remains that the vast majority of the research we want and need…it comes from that pot. We don’t have to be helpless though, and I do know a lot of people do feel that way. What difference does one small voice make, right? But we do not have to be one small voice, we are a community of people who…on at least one issue…can speak with one big voice and that gets peoples’ attention.

Every March, the National Fragile X Foundation hosts Advocacy Day. It’s the first Tuesday and Wednesday in March. If you want a cure, you need to add your voice to those efforts. You need to write letters, you need to make phone calls but MORE importantly…you need to SHOW UP. Letters may get scanned and set aside. Think for a minute about your junk mail pile and then think about what your Representative or Senators’ pile looks like. You don’t want to just be one more letter in that pile. Calling is good! It’s hard to ignore a voice on the other end of a line…but you’re not going to get to your Representative or Senators that way either. You’ll most likely speak to a volunteer or intern, an eager, intelligent person to be sure, but you will just get added to the list of things they tell their boss. You don’t want to be just one of a dozen or more items on that list for the weekly meeting. If you SHOW UP in their office, you still will probably talk to a staff member. But that list of names of constituents who showed up that week to discuss an issue or make a request? That list is pretty short, that is the list you want to be on. And in a perfect world, you would do all three because there is no way you get ignored then!

So, Advocacy…it’s very important. I understand that the financial and logistical aspects can make going to Washington an impossibility but there are still phone calls to make and letters to write…and that’s way better than doing nothing! You really don’t have an excuse to not do those two things. This is how we get our Representative and Senators to sign on to fragile X research funding and this is how lab research turns to real world research. No, they don’t always listen, I know. One of our Senators has given us the same brush off letter two years running. He also happens to be up for reelection. I know I’m getting dangerously close to politics here but I think you can imagine how those two generic, brush off letters, containing “as you know” language that was written by a researcher that ALL the Senators and Representatives use ((Guess what guys, we talk, we share those letters, we KNOW when you have not paid attention!)), made us feel. It influences how we perceive him and it influences how we vote. SO, no he didn’t listen, I used my voice and failed BUT I have other options to let him know what I thought of that. You all have the same options.

OY! Now we are finally getting to where I thought I was starting, I really do have an amazing talent for tangents *sigh*


When I say trials I’m sure most think immediately of drug trials. The fact is, though, that not all research trials involve drugs of any sort. There is one going on called “Validation of Saliva in the Esoterix Genetic Laboratories Fragile X Assay” basically they do a blood test to see what your fragile X status is and then they collect saliva to prove that their saliva test kit works. No drugs. The the majority, however, are drug trials. There is a lot that has to happen before they get to this stage where they can do human research and prove that it works as they think it will. But when they get to this point, the research cannot move even a little bit forward, to what everyone hopes will be a cure ultimately, if they don’t have volunteers to participate in the study.

No study participants=No data=No cure!

All the lab results or money in the world won’t get us past this.

A few years ago, we met with some people at Seaside Therapeutics because they’re right here in our backyard and they wanted to meet families. When we were talking about what they were working on and what their hopes were for getting this really promising drug out to the people who would benefit from it, OUR KIDS, they thought 2012 would be the year. They planned to have done the research and jumped through all the hoops and finally, finally, get it to the point where you could ask your doctor to prescribe it. Where you could stop by the local pharmacy and pick up a pill (or capsule, or liquid) that helped your kid be the best they can be. Does that not sound amazing??

I left that meeting with a soaring heart.


Well, guess what? It’s 2012 and we still don’t have a pill, capsule or liquid to help our kids. We are still up night after night with red eyes and broken hearts, watching desperately as time slips though our fingers. It makes me furious sometimes to think about all the wasted time. You know what we’re looking at now?


ANOTHER three fucking years. That isn’t OK with me and it shouldn’t be OK with you either and you know what? It makes me really, really, really angry with the people holding this up. Not the FDA, not Seaside…it’s US. You and me and every other parent of a child with fragile X out there who isn’t paying attention, who doesn’t know about the studies or who simply isn’t willing to participate.

See how I include myself in there? I’m as at fault as anyone out there. We still haven’t started that study…we have a visit soon…but we’ve dragged our feet and contributed directly to three more lost years. Go team.

No one else can do this part for us, folks. If we aren’t willing to step up and face some potential hardships…travel, doctors visits, possible side effects…it all ends here. So all that money I’ve been going to Washington and begging for? Wasted. USELESS. It’s embarrassing, really. But I’m not owning this all on my own. If you’ve gone and been turned away from a study, you get an A for effort…did you keep looking at other studies? Have you been turned down for them ALL? Do you even know what else is out there? No one can spoon feed this to you, you have to do the work, you have to be willing to sacrifice in the short term for the long term benefit.

Phew! I wish that had made me feel better, I really do, but guess what? These are just words on a page…angry, helpless, useless words on a page. It doesn’t help Monkey. It doesn’t help your kids either. I can cry and yell and swear ALL I WANT and I can’t fix this. I can’t make this happen for Monkey on my own. I’m depending on your, counting on you, to help me help him….help me help your child! I’ll beg if that is what it takes for you to click on this link and make some phone calls:

Then, just as importantly, keep checking that link. Sign up for the RSS so new postings show up in your email. Put a calendar reminder to check once a month. I don’t care how you do it but don’t just think you’ll do it because you won’t. You will forget ((It is a carrier thing!))! We’re all busy and have a lot on our minds…you need to do something to keep this at the front of your mind. OK? Please? Pretty please? I’ll never swear again ((Lie, sorry!)) or I’ll swear at old ladies ((Since some of you find this hysterical!))…whatever makes you click on that LINK and MAKE THE CALLS.

I know this isn’t easy. I have agonized over this decision to put Monkey in a trial. A small fraction has made it here but most of it has been eating at my brain, giving me headaches, keeping me up at night, giving me nightmares. I know as well as anyone does that this is a huge step. But guess what? If you aren’t willing to take it? Then I can’t get there either. All my agonizing and stress and eventual decision to participate. All my motivation. All my determination. All my hope. Will leave me right where I am now. Angry and frustrated and desperately watching more time slip away.

I can’t speak for everyone but my kid? He deserves WAY BETTER than he’s gotten so far. I love, love, love that people love, love, love him and his hair and his sense of humor and his sweet smile…but that doesn’t do a damn bit of good, people, if you won’t step up here. We are stealing the futures of our own children…of each others children…how can we be OK with that? How can we sleep at night, knowing that there was more we could do and we chose not to do anything? It turns out, I can’t.

How are you sleeping?


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!

I only show up when I need something!

I’m not sure where my writer’s block is coming from, it’s incredibly frustrating to have so much to say and no way to get it from my brain to the screen. Perhaps more wine will help? Or perhaps less? HAHA! Ugh.

Anyway… I need something *SHOCKER*, I know.

I would like to ask each and everyone of you to go to the link below and take 30 seconds to fill it out. It will generate a letter to your members of Congress, asking them to keep the current funding, in the NIH, CDC and DoD budgets targeted at fragile X research, in place for another year.

This is the money that funds research towards a cure. Research, by the way, that is showing promise in treating Autism, Alzheimer’s and Parkinson’s. This is the money that keeps the National Fragile X Foundation operating so that when a family, like mine, has their world rocked to the core…there is someone to help them figure out how to find a new normal.

I’d like you to take one minute and look at your child. Imagine for a moment that he or she has Fragile X Syndrome. Imagine for one moment that you DID THAT to him or her. Imagine for one moment that there is absolutely NOTHING you can do to fix it. You can fight the school and insurance company for therapy and it will help, it will help a lot, but it won’t FIX IT. Nothing will fix it.

Now, tell me why, when we are getting close to medications that can FIX IT, you won’t send a letter telling them not to stop short of the goal line?

Send a Letter!

UPDATE! As of 11am we have…2,220 letters total (That’s up 175 letters from 9 AM!!) 82 Senators and 255 Reps (almost 60% of House) have heard from us. We need more letters especially in ID, LA, HI, UT, VT, MT (we only have 1 from each) and DE, AK, NV (we have 0 from these states).

Please write a letter even if your state isn’t listed here…we’re still missing some Senators and Reps from other states!

If you don’t know what to write for the Personal Statement you can say “I have friends who are affected by fragile X syndrome.

So you have decided to attend Advocacy Day!

First, let me say…if you are on the fence and you are letting your carrier anxiety hold you back just pop on over to the NFXF’s beautiful, new website right now and sign up. Do it real quick, don’t think. Just…do it. Advocacy Day is March 6th and 7th 5th and 6th ((in 2013)) in Washington D.C.

Register Now!

OK, good! Yes, I know, you feel like vomiting but it will pass. I promise. Now that you’re signed up to attend I thought I’d share a few helpful tips for a first time Advocate.

  1. The Foundation will have a series of web events/conference calls before Advocacy Day, watch your e-mail and attend. You will get to hear from Jeffrey Cohen, the Director of Government Affairs & Advocacy, and other team members about what to expect. They have been doing this since 2004 and they will have helpful information.
  2. On Tuesday, March 6th 5th starting at 1pm there will be training. We will all sit in a big conference room and we will be told what we are asking for and why. We will be given a chance to practice what it is we want to say. In advance, what you need to know is that the most important thing you will say during each visit is WHAT BROUGHT YOU TO DC. The staff and/or Congressmen know that this is a big deal for a citizen to take time and money and to visit them in DC. They already know this is important to you and they will respect that. Tell them why you came…I’m guessing it’s because you have a friend or family member who is affected by fragile X, one of the other FXDs or maybe both.
  3. Bring a picture(s) of your friend or family member. Some people leave copies, some do not. That is up to you. What we did was show the picture, talk about Caleb, make “the ask” (fancy advocate speech, aren’t you impressed?) and moved on to the next appointment. The day after we returned from DC, we e-mailed the staff members for both of our Senators and our Congressman and we included a copy of the picture in the e-mail. It saved us from having to print and carry them and it put a face to the e-mail. A really cute face.
  4. Bring a business card. You can use a print from home template if you don’t have one. You can use a professional one too if you have it, it’s up to you. You just need to have some way to leave them your contact information. They will give you cards in return. You need them for the e-mails you will send when you get home.
  5. Attire, the training and post-training dinner are casual. The day of the meetings is a different story. Dress in a way that shows the respect you have for the institution. Suits/ties for guys, Suits and/or dressy day wear for women.
  6. COMFORTABLE SHOES. Is that enough emphasis for you? The halls are marble, in between you will be walking very, very quickly on sidewalks. These are hard surfaces and can leave you sore. This might not be the time to break out heels if you don’t normally wear them. This is definitely not the time to be breaking in new shoes! It might be a great time for some of those gel inserts.
  7. Think “layers” it might be 30 and windy, it might be 70 and sunny…it might be *both* during the same day. Come prepared to shed layers.
  8. Security is understandably high on Capitol Hill. Every time you enter a building you will need to clear security. Pack light. Ladies, empty your purses of all that crap that builds up and just put in the essentials. The size of bags is restricted so really, think minimal, easy to search.
  9. Essentials
    • ID. Duh, right?
    • Breath mints. You are going to do a lot of talking and your mouth will get dry. You can’t bring water through security but you can purchase it at some locations inside. You might not have time to stop or the good fortune to walk past them.
    • Cash. You might want to grab a cab to get from one location to another. They provide a bus TO Capitol Hill but you are responsible for your transportation back to the hotel. It is Metro accessible and you should, by all means, feel free to take it for the adventure but plan in advance to take that cab. It’s not expensive and you will probably be really, really happy that it’s an option.
    • A camera. The buildings are gorgeous, there is history everywhere you turn, you’re going to be seeing old friends, meeting with new ones or maybe even meeting old friends who you only know through Facebook or the e-mail listserve or…say…an amazing blog! If you do meet with your Representative or Senator personally, most meet with a staffer, you will want photos of that too.
    • SNACKS. You will be running from one side of the Hill to the other and maybe back again. There will be a lunch break scheduled and you can eat in the dining rooms but you might not want to count on it. The dining rooms are *crowded* and finding a place to sit, after waiting in line, will likely eat up your entire break. We had 5 minutes to scarf down our food before we had to run for the next appointment. I should have just had a granola bar. We cannot bring food onto the House floor and we will be getting an amazing tour led by Representative Gregg Harper (who has a son, Livingston, with Fragile X) first thing in the morning. The House floor is not open to the public, this is a very special event and it is worth the trip all by itself. There are convenience stores located in the office buildings, I suggest trying to stop and grab a snack as soon as you can so you have it should you need it ((I am so going to need it!)).

Now that I’ve made this sound like a hectic, exhausting day let me just add that it is amazingly invigorating. At the very least, you will meet in the neighborhood of 100 to 150 parents, friends and siblings of kids with fragile x. That alone is worth the trip…to be able to sit down to dinner and tell a funny story or brag a bit and not have to explain *why* it’s funny or brag-worthy Also, after dinner, we usually congregate in the hotel bar to chat and maybe have a cocktail before we turn in early ((*wink*wink*nudge*nudge*)) so we are refreshed and energized for the next day ((As if FX parents would know what to do with 8 hours of uninterrupted sleep!)).

The meetings themselves are empowering too though. You will have the ear of the man or woman who makes the decisions on funding for research, who write or vote for or against laws that can change your child’s life. A lot of the time fragile x feels like this thing that happened to us, something that blew into our lives unexpectedly and tore apart everything we thought we were or knew. This is a chance to be an active participant in making things a little better for other parents and hopefully yourself and it feels so good.

What *if* you really and truly cannot come to Washington, either for lack of childcare or lack of funds but you really, really want to help? You can write letters!

The Foundation will have a template you can use so you are asking for the same things the rest of us will be asking for. If there are people from your state going they can use those letters to get appointments to speak with your representative when they would not otherwise be able to do so. If there are no other people from your state going the Foundation will deliver them. Getting a handwritten (or typed but signed), physical letter will make an impact that an e-mail will lack. It shows commitment, it shows passion, it shows that you…the people who vote in the next election…care about this issue.

SO, who is with me??

We’re baaaack!

I started to write a blog post about our trip to Washington, D.C. last week and it’s now at four pages and counting. Hmmm. Anyone got a few hours to hear about how AWESOME it was? No? Fine.

To sum up. Advocacy Day: It rocks.

The only thing that rocks harder than a chance to speak to some of the most influential people in this country about Fragile X is the fact that you get to do it surrounded by other parents, siblings and grandparents of kids with Fragile X…oh, and let us not forget the AMAZING self-advocates who also came to Capitol Hill to tell their representatives how much this money and these laws mean to THEM. They brought us to tears at times and gave us so much hope for our son’s future. It is healing to spend time with these young adults and see the possibilities when the fact is most people only want to see the impossibilities when it comes to our kids. We cannot let that be…not if we really want to change the world and we do, don’t we?

I was so intimidated by the very idea of traveling to Washington. I am absolutely disgusted by what I see coming out of Washington on a daily basis…the bickering and finger pointing and absolute cluelessness that seems rampant when you watch those shows with the “news” anchors who are frothing at the mouth over one pointless issue after another *sigh* I really and truly despise politics…but I LOVE MY CHILD MORE. So I put on my big girl panties and signed up…and I am so glad I did!

Advocacy Day has nothing to do with politics. Fragile X Syndrome isn’t a Republican issue, it’s not a Democratic issue…it cuts across political, social, racial and gender lines. We were there as parents of an amazing child who did nothing to deserve having a disability but he does deserve every chance to achieve and to make choices for his life…just like every other child. We were given the tools we needed to go to the hill and make our pitch for supporting the research that is making so much progress. We were given the info we needed to tell them why they should sign on to co-sponsor the legislation that could change our child’s life…that could ease the desperate worries we have over his future.

Despite my worries over our reception in certain circles *ahem* we were met with nothing but kindness and attention. The staffers we met with were interested in our stories, they listened, they asked questions, they cooed over pictures of our adorable Monkey ((Which, really, that alone would have made me love them!)). We had a chance to meet with one of our Senators which was very exciting. He was gracious and listened to our stories even though he had very limited time.

So, if you didn’t go this year because you hate politicians and think Washington is irretrievably broken and hostile and ignorant…go next year. Even though it may seem to be all of those things when you’re watching the talking heads, remember this…the talking heads wouldn’t have a JOB if they didn’t have ratings and conflict…it brings the ratings. When you are on the ground in D.C. and talking to the staffers who do the research and take the meetings it’s nothing like that at all. By the end of the day all of my anxiety had washed away and I was enjoying myself completely.

If you didn’t go this year because of finances…check out the scholarships because we really need you to be there…you really need to share your story.

What is next?

So, we’re all caught up on last week. It’s time to talk…another trip, lol.

Monkey went to school today and after school Duhdee will drive him to Maine to spend the next 3 nights with his grandparents! He absolutely loves going to “Grammy’s house” and this trip will be extra fun, I think. Grampa is now retired and will be home allllll day. Grampa doesn’t have a “sit still” bone in his body, I am guessing Monkey is going to enjoy his adventure.

Our house guests from last week will be returning to keep an eye on things for us at home, mainly on my old dogs, one of whom is really starting to show his 15, going on 16, years. I feel so much better about leaving him when I know someone who loves him is there in case he needs anything. She’ll also be here to make sure the sidewalk gets shoveled should it need to be done…it’s also very nice to have someone around to do that stuff so Grampy is well looked after too.

Tomorrow, bright and shiny early, we leave for Advocacy Day. We will be joining 123 (at last count) other Fragile X advocates in Washington, D.C. We will have 4 1/2 hours of training on Tuesday and then on Wednesday we will visit our representative and Senators, or their staffers, on Capitol Hill and tell them all about Monkey. Our primary goals are to introduce ourselves and our little Monkey to them, to give them a face to put to this thing called Fragile X Syndrome and then ask them to support the National Fragile X Foundation’s goals for the year. It’s our first trip and we are very excited.

I’m sure I’ll be FBing like mad but I’ll update when we get back because, shockingly, there are some who don’t use facebook! Crazy, right?