Author: Melissa

I swear, I wrote a post this morning, a brilliant one at that ((Naturally.)),  and now I cannot find it. Apparently, I composed an entire post in my head and never wrote it down. How does that happen? *sigh* Now my mind is as blank as this screen.

I mentioned on facebook that Duhdee and I are doing a presentation at a middle school next Tuesday. We have a group of 8th grade students who are learning about people with disabilities and they’ve decided to spend next week’s alloted time on fragile X syndrome. As much as I hate getting up in front of people (at least until I actually get up there, then I turn into a ham…imagine that), I couldn’t let this opportunity pass by. So, ready or not, we’re doing our first FX presentation.

It’s going to be fine. It’s going to be better than fine, it’s going to be great! And if it sucks, we’ll learn from it and do better next time…and only twenty 14 year olds ((And the entire internet.)) will ever have to know…

I find it so hard to be really, really, really, SUPER excited about something and not be able to shout it from the rooftops! But I CAN’T and I, unlike my husband, HATE secrets. I am terrible at keeping them. *sigh* But it will be worth it *grin*

I’m not sure what happened…suddenly, I’m so full of plans. There seem to be so many directions that are open to us right now and every one of them makes my little, cold, dark heart flutter with life. We started the LINKS group because we wanted to provide friendship and support to people who felt maybe a little lonely on this journey and I think we’ve done that. We’ve met some terrific new friends and I hope we meet a lot more. It’s been an amazing experience.

This was completely outside my comfort zone. I kept saying that we’d been railroaded into this and I was partly mostly joking. I was equal parts excited and terrified. Seven and a half months later, I’m not terrified anymore! Thanks to the amazing support of the NFXF and other LINKS leaders I actually feel really good about what we’re doing. I hate to say this, but I think I can trust you not to tell anyone, I actually feel like I’ve regained some control of my life *shh*

There is something about turning all that energy that I had been putting into worrying, into positive action…into things that make others a little bit happy and a little bit hopeful ((At least that is my hope.)).

So…point…point…OH! Go read this A Guaranteed Motivator and then this if you have to What Do You Do? and then don’t think about it…DO IT. Even if you’re scared ((Like me.)) or totally over scheduled already ((Like my husband.)). It’s the best feeling…

This is probably going to be the hardest post I have ever tried to write, I’m already choking up. I’ve shared a lot of really personal things here but the only one to be hurt or disappointed or offended, if I couldn’t find the right words, was me and I have hurt, disappointed and totally offended myself on numerous occasions here!

I need to start out by saying that, despite the way the rest of this post is going to sound, I don’t love this person because of what she’s done for me or what she’s done for children with fragile X syndrome or what she’s done for children with disabilities in general. I love her because she is quite simply one of the most amazing ((FUCKING!!)) people I’ve ever known. She understands me when I don’t understand myself; she knows I’m a freak because she is a freak in many of the same ways. She is actually all the pieces of myself *and* my geeky, loving, motivated husband that I like best. She’s my favorite. She is a lot of people’s favorite. She is the one, the only ((So unfortunate because I wish everyone had one!)), Holly Roos.

So, why on earth am I going to blog about Holly? We have daily love-fests via Skype, e-mail and text message…it just seems right to take it completely public now because CNN has opened their 2011 CNN Heroes. I am certainly not going to claim credit for this idea; I didn’t even know the nominations were open, that credit goes to Katie Clapp of FRAXA ((Seriously if you get the nod from Katie FREAKING Clapp?  You are doing something very, very right!)). The moment she suggested it however, I felt like the world’s biggest chump because it is so obviously the right idea that I can’t believe I hadn’t thought of it. In fact, I can’t believe that YOU hadn’t thought of it either, come on people, step up your GAME already!

So I went to that CNN website and started filling out the Nomination Form and thought…I know I’m not the only one who’s going to flip for this idea but this thing asks for a lot of info…a lot of info that you may or may not know about wonder Holly. I’m going to assume that you know “Your Info.” If not…well…hmm. Sorry?

I thought I might provide some of the details though for the rest of the form to help you out if you don’t know all the nitty gritty details.

So, let’s get this party started!

Let’s start off with the easy stuff…Holly’s contact information ((I hope she forgives me for publicly sharing this. Please, internet crazies, be NICE to her or I will hurt you. Big hurt, in fact.))

Name: Holly Roos ((I know, duh, but I am anal retentive this way, I must be thorough!))

City: Canton, IL 61520, United States

E-mail address: allsmyalls@yahoo.com ((Sorry, even I’m not stupid enough to share her phone number and expect to survive, you only need one so you get e-mail!))

Age: 26-49 ((Thank you for big ranges!))

Select a category: Pick your poison, I think either Championing Children or Protecting the Powerless are equally apropos.

And now that part that terrifies me because there is no WAY I’ll ever get everything… please note, this should be in YOUR OWN WORDS but I’m planning to give you enough fuel to create a smoking nomination!

Q: In your own words, why does your nominee deserve recognition as a CNN Hero? Please describe in detail your nominee’s specific accomplishment and what was involved in achieving it. Be sure to include the dates of the activities.

Holly has dedicated herself to raising awareness of Fragile X Syndrome and other causes related to children with disabilities.

• She has created numerous public service announcements with prominent local and nationally recognized individuals and organizations. Including Congressman Phil Hare (D – IL) and Congressmen Gregg Harper (R – MS) in 2009, Life My Way (IL based disability advocacy group) in 2009 and once again in 2011 as part of Life My Way’s The Social Challenge.
• She was recognized in a House speech for her role in raising Fragile X Awareness in July, 2010.
• She was awarded the Education and Awareness award from the National Fragile X Foundation in 2008.
• She has lobbied and advocated toward Members of Congress on FX awareness and the need for increased federal research funding since 2008.
• She played an instrumental role in the creation of the Congressional Fragile X Caucus in 2009.
• She has organized a Walk for Fragile X Syndrome in Honor of Parker and Allison to raise money and awareness every year since 2004.
• She is the Founder and President of the Central Illinois Fragile X Resource Group, she provides support to local families, participates on the family advisory council for the Fragile X Clinic at Rush University Medical Center and she has mentored several new LINKS groups ((Including mine *preen*)).
• She is working with the Fragile X Clinic at Rush University Medical Center to set up a satellite location in Central IL to reach families who can’t make the drive to the main Chicago clinic.
• She has written numerous published articles regarding fragile x syndrome since 2003, many of which do not show her as the author because she was more interested in the message than in promoting the messenger.

Holly has dedicated herself to connecting families affected by Fragile X Syndrome, to provide the emotional support the families need and to ensure that no one family feels alone with this diagnosis.

• She has utilized social media, most notably, Facebook, to connect over 500 families allowing them to share challenges, received support when needed and to share triumphs and treatment/therapy options.
• She has used the power of the internet to connect families with other local families through her work with the National Fragile X Foundation and the numerous local LINKS groups that work with the Foundation.

Holly has dedicated herself to empowering families affected by Fragile X Syndrome. Holly is a proponent of families making their own paths through this life with children with special needs. She provides tools, advice and connections and, most importantly, she provides the encouragement needed for families to finally take control of their journeys.

• She has spoken at the biennial International Fragile X Syndrome conferences in 2008 and 2010 presenting the topics How to Bring FX Professionals to Your School, Media Relations panel, Talking to Your Child’s Class about FXS and Fundraising.
• She has used social media as well as the power of the internet to share resources with families, connect families to one of the 22 Fragile X clinics around the county and act as an indefatigable cheerleader for families who are struggling.
• She makes herself available by e-mail and phone to the hundreds of families who need her advice spending hours every day reaching out to those in need.
• She has made herself available to attend IEP meetings with families all over the country who need assistance advocating for their children.
• Now that her children are school aged, Holly has seen a huge need to reach out directly to their peers to get them involved in supporting students with special needs. She has taught scores of other parents to do the same for their own children.

As if all that wasn’t enough, Holly now works with for the National Fragile X Foundation as an independent contractor. Her professional life now revolves around fragile X and improving the lives of families! It is absolutely the most perfect fit between a person’s passion and a job that I’ve ever seen and it’s enabled me to get to know the very serious, very professional, very focused ((Dare I say drill sergeantesque? Yep, I guess I do. She’ll forgive me after I drop and give her 20!)), parts of her personality.

• She is responsible for strengthening the existing Fragile X clinics around the country by fostering connections with LINKS (Linking Individuals Nationally in Knowledge and Support) groups which in turn improves the quality of care the clinics are providing.
• She is responsible for making sure the clinics operate in a way that allows them to continue to receive that all important money through the CDC and this is not easy…the guidelines are pretty darn strict, as they should be.
• She is responsible for helping to open new clinics and starting new parent LINKS groups.

Q: How have your nominee’s efforts made a difference for the better? Please describe their impact, potential impact and how they have inspired others.

This is the hardest one and the easiest one…this is where you need to speak from your heart, OK? I think many of you will have no trouble at all explaining how she’s changed your life…I’ve heard that about her a lot…it’s true for us.

• She has raised tens of thousands of dollars for the National Fragile X Foundation and FRAXA. The money has gone toward advocacy on a national level, supporting families and research which has brought us closer and closer to real treatments and possibly a cure.
• She has inspired many parents to advocate for their children, raise money for the Foundation and FRAXA, start LINKS groups affiliated with the Foundation and use their voices and their social media inclinations to fight the casual misuse of the “R” word, etc.

Q: Is there a specific incident or turning point that motivated your nominee to take action?

Holly’s 11 year old son, Parker, and her 8 year old daughter, Allison, were diagnosed with Fragile X Syndrome in 2003 at the ages of 3 ½ years and 7 months, respectively. She was, like many of us, lost. No one, professional or otherwise, knew what FXS was. She felt alone. She felt frustrated because her children were not getting everything they needed to thrive.

She has been on a mission since that time to educate the general public, educators and medical professionals alike about FXS.

It all started with Parker and Allison but it’s no longer just about them. It’s about my son and yours. It’s about the family who still doesn’t know why their child struggles and behaves the way they do. It’s about the family who just got that devastating news, news that has changed rest of their lives. It’s about the family who needs more than a photocopy of “Welcome to Holland.”

Q: Is there anything else that makes your nominee exceptional or unique?

Holly is just Holly. She’s not rich, she wasn’t a mover and shaker, she didn’t have any special training. She was “just” a mom with a huge heart and seeming endless amounts of energy. She would rather help others than sleep. She is always doing something to further the cause even if it is just telling a cab driver on the way to the hotel about fragile x. Every person she tells her story to is one more person out there that knows what Fragile X Syndrome is and if it makes that person think they know someone who could benefit from the information or help the cause, even better.

Holly has an aura about her that inspires people to share their lives with her and inspires people to want to help her. She has converted Congressmen, businessmen (and women) and ordinary people to the cause. She inspires people to help in many ways, not the least of which is opening their wallets for research.

Holly, just by being Holly, has made hundreds of families across the world feel understood, loved and supported. I can’t even begin to tell you how many times I’ve heard, “I felt so alone, and then I met Holly.”

And, quite possibly the most impressive thing is, she’s done it while raising two amazing kids with special needs.

Q: How will being recognized as a CNN Hero further your nominee’s cause?

There are still thousands of people out there that don’t know why their kids struggle because even medical professionals often haven’t heard of Fragile X Syndrome. This means there are thousands of people out there feeling lost and alone in their struggles, they don’t know why their kids have such a hard time with everyday life. It’s misdiagnosed often as autism but autism alone never quite fits which just leaves families desperate and frustrated. There is no reason for these families to struggle, there is no reason why the kids don’t get the early services they need to be their best except, in many cases, lack of knowledge. Being recognized as a CNN Hero will give Holly the opportunity to reach a national audience, to get families to ask for tests for fragile X syndrome, to maybe prevent families from walking this path alone and misunderstood.

If you would like to share any websites or online articles about your nominee’s activities, you may enter up to 3 links here

Central Illinois Fragile X Resource Group

 

**A quick shout out to Kim Walther Miller ((Who is WAYYYY to busy to blog but does occasionally show up on Facebook!)), Paula Di Fabio Fasciano and others who’ve helped me fill in the details!**

a Meme…so this one is all about me! Me!! ME!!!

1. Make a list of 5 things that you can see without getting up.

My son ((He is never far when I am home.)), Gus ((My garden gnome who spends his winters inside.)), our fish tank (The angelfish are lovely to watch) ((The tank needs to be cleaned, noted.)), the flyer for The Christmas Tree Shops ((I need the Zebra Cleaning Collection, in pink!)) and Johnny Depp ((It is an old Vanity Fair cover. Good gravy he is nice to look at!)).

2. How do you style your hair?

I blow-dry my hair, upside down, every day. It’s the only way to get the volume at the roots I need and to reach the back of my hair ((Yes, it is too long again!)).

3. What are you wearing now?

Pink cupcake pajamas ((It is before 3 PM on a Saturday, what else would I wear??)).

4. What’s your occupation?

I am a Senior Corporate Paralegal at a large law firm. It is pretty much the tip-top of the game for someone such as me and I’m rather proud of that. ((What I dislike most about it is that the work coordinator insists on calling us Seniors. I should ask if we qualify for a senior discount.))

5. What do you hear right now?

Monkey supervising the making of breakfast ((Homemade corned-beef hash, eggs to order and toast. Yes, I AM spoiled.)). “Honey, cook! Cooking! Eggs!”

6. Who was the last person you hugged?

Monkey ((Of course.)).

7. What is/was for dinner?

Not a clue, you’d have to ask Duhdee ((He probably does not know either. We did not menu plan this week and everything has been rather fly by the seat of your pants.)).

8. What’s the last tv show you watched?

Wasted Spaces ((I set up a ton of DIY and design shows to record, this one is not a keeper.)) on HGTV.

9. Dog person or cat person?

Dog ((Most emphatically. I am scared of cats, which means cats love me and insist on rubbing all over me and freaking me the hell OUT.)). I like them in pairs or packs best. We have two now.

10. If you had to change your name, what would you change it to?

Chloe or Roxanne ((These were the names my Mom and Dad had picked before they settled on my name. My mom is still obsessed with Chloe, she is holding out hope for a granddaughter, I suspect. Roxanne, well, I love my Dad and did not want him to feel left out but NO WAY IN HELL. The song was about a HOOKER, Dad!)).

11. What was the last thing that you bought?

Lunch, yesterday. Beef stew and a sourdough roll…yummmmm…

12. If you could afford to go anywhere in the world, where would you go?

Everywhere. Top choices are: Australia ((2013, birches!)), Ireland and Kenya or Tanzania.

13. Where do you see yourself in five years?

Happier ((Started my meds again, finally!)), with a thriving and active LINKS group!

14. Favorite book?

I love to read, off the top of my head I would say The Stand by Stephen King or The Histories by Herodotus.

15. What are you doing this weekend?

Today, cleaning ((Wahhhhhhh!)), tomorrow Monkey has a play date ((They are going to try it here and if it is too much, they will go to a park since it should be really nice out.)) as does Money!

16. If you could play any musical instrument, which one would you play?

Guitar…but I’d have to be able to sing too.

17. How are you?

I’m fine ((Universal code for most definitely NOT OK, right?)), you?

Seriously though, I’m feeling the most energized and motivated I’ve felt in years, maybe ever, thanks in no small part to the circle of amazing Fragile X Moms & Dads we’ve found locally and not so locally. You want to hear something pathetic? I feel like this is the most friends ((Meaning people I feel comfortable sharing the real, goofy, moody, neurotic, guilt wracked me with.)) I’ve had…ever. Two years ago I couldn’t have named more than 1 or 2 people I considered friends. That makes me so sad for that old me.

18. What are you looking forward to the most?

There are SO many things…but the breakfast tomorrow with some local FX moms is right at the very, tippy, top!

But, you know…no one HERE is excited about it or anything! I have had a very limited work schedule these past weeks because of all the other stuff going on. I have to say, I am not a fan of working full weeks! I get why I have to and I’m fortunate to be able to…but who wouldn’t rather play?

All my adult life I’ve had people tell me that work ceases to feel like work when you are passionate about it but I’ve never found anything that I feel passionate about…not really. Now I’ve found something, it just doesn’t pay or provide health benefits. So, that rather sucks 🙂 Moving on.

This weekend Monkey finally gets the playdate he’s been requesting with a school friend. Now we just need to figure out how to make that happen…Monkey hates having people in his space and he hates people touching his toys. On the one hand, he’ll never learn if we don’t give him the opportunity to do so but, on the other, this is the first time he has ever asked for a playdate and I’d really, really like for it to go smoothly…it doesn’t seem like the best time for a “lesson” to me.

Thoughts?

We are all about trying to increase Monkey’s independence. He has some chores that he does at home each evening, setting the table and feeding the dogs are the main ones…but we’re always the ones who are providing him with the step by step instructions, not very independent, is it?

So, imagine my excitement when I saw this idea on Kristie Meyer’s blog!

Brilliant, head on over to read it!