Paula's Place - Fragile X, Fascianos and More!!

2011-12-07T16:20:00.000-05:00

Radio Interview at Ben FM

I can't believe I haven't blogged this yet. I had such a great time doing this with the wonderful people from Suburban Research who ran the STX209 clinical trial that Matty participated in.

I felt so empowered and I would love to do it more!

My friend Cara put this on her FB page today

2011-12-07T16:01:00.001-05:00

If the average child stares at someone who is different from them & the parent says, "it's not polite to stare"-- that parent is not seeing the larger picture.

Their intentions may be good, but this is an inadequate way to teach your child acceptance. Regardless if your child is a kid or an adult, you are the parent.

Acceptance begins with you.

In the same respect, if you’re an older sibling or cousin…think of who is looking up to you. What are they really seeing?

You owe it to the younger generation to take responsibility, to allow them to understand that this universe is made up of all kinds of different people. They can learn from you, more than anyone else in their life, that differences are not only OK but they're a normal part of existence.

I can't think of anything else that needs to be said today....let's all try to keep this in our minds....and not just because it's the holidays, because we are all human beings, how about that?

A moment to spare........

2011-09-28T20:42:00.001-04:00

I have so much blogging to do, I will never finish!

Just got the Blogger app for my iPad. This, may motivate me to blog again!

Things are really good in my little world. There is a LOT to be grateful for.

Boys are great, that's what matters most. Been speaking to many newly dx Fragile X families. I feel for the newly diagnosed. I walked in their shoes, 12 years ago.

I'm thrilled to be able to give back a little!

Attaching a picture from my favorite Summer 2011 memory, since Fall started already!

More soon.......

Paula

Is it really ONLY February?

2011-02-06T08:34:00.003-05:00

I do realize that February just started...my milestone is A's birthday which is the 5th..but honestly, I'm so done with the post holidays blues, this horrific winter we're having and just things happening in my life in general.
Last night we got to forget about things for a while....we went out to a wonderful dinner with very dear friends, and then we went to see "The Fighter." If you haven't seen it, it's a great film.
I was going to try to be better about blogging in 2011...not sure why it still escapes me so frequently.
I was thinking that putting things "out there" would make me feel better and make it easier to move on when things get me down. Now, I'm thinking just the opposite...that it makes me dwell on things longer when I write them down.
That said, I'm so thrilled with the boys. They don't suffer any of the post holiday blues...life just continues for them. Matty is thriving in school, getting really good grades, for the first time ever, enjoying being a middle school student with a hectic schedule that includes afterschool activities. Benjamin is a constant scheduler and needs to know and update you on not only his own schedule, but Matty's Dad's and mine too. He makes me laugh...such a happy little boy. He's also doing beautifully in school, and I couldn't be happier with the way he's developing.
I'm working on our family newsletter, as I prepare to go to Washington DC for the National Fragile X Foundation's Advocacy Day 2011 in March. I realize that we do so many things in any given year, and while our children's progress might not be measured the same way as most, we're still making huge strides each year. We took these boys to Italy last summer for 2 weeks...where they didn't speak the language or understand the culture, and they loved it and had such a wonderful time and are both still talking about it.
I love that they amaze me everyday...right now I'm watching Ben have a football catch with his dad in the foyer....while I want to be all "Don't play ball in the house"...I remember when Ben couldn't hold the football, let alone throw it at all, forget that his accuracy is great these days ( well, and the football is a Nerf).
Matthew wanted his dad to have a NY Jets cake for his birthday....his rationale and this thought process is still maturing, something I worry about all the time, as I've read that boys with Fragile X reach an intellectual plateau in puberty. I will fight that with every ounce of my being, and I will continue to push him and stay on him as that's the only way he continues to grow.
Well....funny....I feel much better now than when I started this...it's a beautiful day here in NJ...considering there's a few feet of ice on the ground, and it's still cold...but so what? We're taking the boys to their basketball games in a few hours...it's going to be a great family day!

#keepitpositive

2011-01-12T20:02:00.004-05:00

So, I Twitter. I love it, though in my limited technical savvy, I doubt I understand all there is to about Twitter. Of course, I have 2 accounts. One for Fragile X (FXNJ) and one for everything else (paulafasciano). My catch-all Twitter account follows news outlets, every cosmetic and beauty related product/manufacturer/blogger out there, working out,celebrities.

I love Twitter....I have to say. It's short and sweet and a great way to share a TON of information to a TON of people. I have tried TweetDeck and Seesmic, but I'm simple, so I prefer twitter.com.

It has helped me spread the word about Fragile X (I use #fragilex) when I tweet about it when I can. It's such a powerful medium.

Twitter measures topics that trend by the number of people who tweet with certain "hash tags" in their tweets.

One trending topic I noticed today was "keepitpositive. Seems like a good idea to promote a phrase with a good message.

I also learned a new word today, on Twitter, thanks to Lisa Rinna (I KNOW, but she tweets cool links). "Wasband" is that guy you WERE married to...your ex-husband.....was-band....I completely LOL at that one today....and with kids and husband home for a snow day, I needed a LOL by about 3pm!

That's all I got today....remember, I'm trying to #keepitpositive!

Happy Thanksgiving!

2010-11-24T17:19:00.002-05:00

You know, sometimes I have a hard time being grateful.
Yes, my life is very blessed.
But.....
Sometimes I think I look at Holidays different than some people. Don't get me wrong, I love a Holiday. It's just that for some reason, it's those times of year that it really resonates that my children, well, their not regular children.
I want to be grateful, really I do. For example, I had the luxury of working from home today ( OK, I do that 3 out of 4 workdays a week), my kids had half a day, we had lunch together, hung out together this afternoon playing the Wii. No cooking here, we travel instead for Grandma and Grandpa's house.
My husband (bless his soul) called to say he'd be home in time to take M to his orthodontist appointment, so I wouldn't have to do that. He comes home and takes BOTH kids with him, so that I can relax. OMG....that's a gift in an of itself!
So, as you can see, my life, is charming...for the most part.
It's just that Holidays make it more obvious that my children are different. It's almost heartbreaking ( for me) to celebrate Christmas. It's not that they don't enjoy it, they do. Their excitement is almost contagious! I think that for me, it's a reminder of the things that won't ever be "normal."
I think for Christmas, I'm going to try to give myself the gift of "being OK with how things turned out" and to not wallow in self-pity.
Happy Turkey!

Halloween....not so much for me, thanks!

2010-10-31T20:11:00.002-04:00

So, Halloween in my house is a bit of an anomaly.

I have two boys who are so excited to decorate, make the house all about Halloween, but would rather not trick or treat. They both enjoy wearing costumes ( which is something I know some of my FX sisters struggle with). They are very excited about the "idea" of Halloween.

But, the act of having to go up to someones door (in some cases, people in your neighborhood you don't know) and knock and say "trick or treat" and get candy AND say "thank-you"...... well, when M was little, he'd throw-up at the idea of having to do that...the anxiety would render him immobile. Then, once he was able to do it (remember, I "refuse" to give in to this FX, and let it win. Sometimes, this is super foolish on my part, as somethings are out of my control) he would go to a house or 2 and want to come home.

Well, this morning, he started with "I think I'll stay home and give out the candy." A+ for creativity and for effort....clever enough to try to get out of doing something you don't want to do...no dice though, you're putting that costume on and trick or treating, like it or not....

Which brings me to my point....why am I insisting that my kids "LOVE" Halloween? Really, who cares? It's so not important.

So, I spent some of today being disappointed in myself...

But, both boys went out and trick or treated, with minimal interference from me. I waited on the sidewalk for them at each house. M would lead the way, B would follow. B, being the social creature he is...at each house he tells the candy giver "And that's my mom, Paula" as he points to me on the sidewalk....he's precious!

We covered about 30 homes....we were out maybe an hour...it was enough....we had a better time giving out the candy once we got home!

It was a huge accomplishment....I think about M and the throwing up and the crying, and I realize how far he's come and I'm so proud of them both!

A Fragile X Filled Week!

2010-10-22T17:58:00.002-04:00

Almost a week since a most excellent Fragile X Conference I attended in CT. I took B's 2nd grade teacher with me as well as 2 moms, 1 newly diagnosed and 1 who I've known about 5 years, she's a veteran.

For me, most of the material isn't new, but as mom, it's not always geared towards me. Case in point. Ben's teacher sat through a seminar about how to make modifications for kids with Fragile X and voila...THIS happened. Ben got 100% on his test this week, by the way....just sayin!

It was such a positive experience to have a teacher with me...I'm only sorry I couldn't convince more of them to come. Last night, I attended the PTO meeting at the Early Learning Center (ages 3-5) both my kids attended. I run into the SLP who had my older son, 10 years ago when he started. She was his SLP for 3 years, and essentially taught him to speak. She mentioned to me that she was unable to attend the conference this past weekend, but had wanted to. I was so touched...she hasn't had a child with FX since M, and she hasn't seen him for speech since 2003. She never saw B, he had been assigned a different SLP. That FX touched her life enough to want to learn more really made me happy.

I mentioned to her that in Fragile X related professional development was coming to Marlboro in February. I can't even explain how excited I am about that. To have an expert come in and teach teachers, ST, OT, and PT, LCSW, etc....is beyond my wildest dreams, and was a long time in the planning! I can't wait to see that come to fruition. Just need to figure out how, as a parent, I can attend that one ;-)

I have also been thinking a LOT about trying to raise some serious funds for Fragile X. I feel like that's my next hurdle to tackle, and it's become a necessity if we are indeed going to get this LINKS thing off the ground. More on that later....

A really good week overall for Fragile X in my world, and that's saying a lot, since honestly, sometimes Fragile X makes my life very difficult...

Part 2 - First Day of School

2010-09-02T09:38:00.001-04:00

First Day of School 2010

2010-09-02T09:35:00.001-04:00

Post Mortem - Detroit Fragile X Conference

2010-08-03T19:38:00.003-04:00

Well, it's been a little over a week since I returned from the Fragile X Conference in Dearborn, MI.

To say that I had a good time would be an under-statement. I am almost 11 years post-diagnosis, and this was my 3rd conference, so it's a little different for me than say first time attendees. I'm not trying to attend every single session furiously taking notes the entire time.

For me, it's more about the people I have become friends with over the past 11 years, and making new ones each time I attend. Really, the parents are the ones with all of the information that is the most practical. Don't get me wrong, the professionals in the Fragile X World, plus the researchers and the clinicians are the best, and without them, we wouldn't be where we are with research and new medication trials and such.

So, it's the other parents that leave the biggest impression, for me at this point. Parents have the best suggestions, they have "been there, done that" for virtually everything FX related. I learned more from talking to others and sharing experiences, that it makes the conference that much more valuable.

Plus, there's a bonding that takes place, after the learning day is over, where it's the camaraderie that counts. The Fragile X lessons I learned I took back and share with both kids teachers, and actually volunteered to come in and talk to my 2nd graders class about Fragile X and that's all thanks to a mom who is my role model as far as advocating for her children. She gave a presentation about what she says to her son's classmates and it inspired me so much, that I came home and started finding out what I could do to be able to do the same.

I'm empowered...it's as if you get the feeling there's nothing you can't do for your children to advocate for them in what ever way they need.

A terrific trip, all around....good friends, good information, good outlook for the future....I loved it!

It's been a long time.....

2010-06-30T17:34:00.005-04:00

I can't even believe how long it's been since I blogged....mid-year resolution....blog more! 2010 has been a really tough year, but at least it's half over.
Anthony's mom's sudden death in January left us stunned. We're still shocked and saddened. I miss her very much...she was a very loving person and we'll miss that.

It's been a good year for me personally....I'm really enjoying the boys, they are growing up so fast! I'm working, which is very fortunate! Still on the Board of Education, and helping more and more NJ families diagnosed with Fragile X in my spare time!

My heart breaks for Anthony, it's been rough for him to cope with not only his mother's death, but will all the stuff that comes with clearing out her home and settling her affairs. Her home has 40 years worth of things...all of her children's things from their childhood. We laugh and cry a lot when we're there, as we go through all of her things, keeping those pieces that are sentimental to us and making piles to dole out to those special to her of her effects so that everyone has a "piece" of her to keep.

Boys finished school and are in camp now for the next 6 weeks. They are happy and thriving, and really, what else is there? I find myself feeling sad more often because as they grow older, and the Fragile X becomes more "there"... it makes me sad that Matthew doesn't have friends and experiences like I did when I was 13. It bothers me much more than it does him, but it's heartbreaking. Ben is still too little to be bothered by much of anything...he's 7 and going to be a 2nd grader. He loves Matty and I'm so thankful that at least they have each other, and that they aren't lonely, which either one would be with their inability to make friends if the other wasn't here.

We've been so busy as a family, and that's been keeping us going! More soon!

Advocacy Day Video 3/3/2010

2010-03-10T09:04:00.002-05:00

Floored: Advocate group visits House - TheHill.com

2010-03-10T08:59:00.000-05:00

Floored: Advocate group visits House - TheHill.com

Support the NFXF by voting for us! If we win, Chase will make a HUGE donation!

2009-12-03T10:22:00.000-05:00

It's been a while....

2009-11-18T12:25:00.002-05:00

Hello!

It's been so long since I sat down to write something to blog. Lucky for me, that there has been so much information out there on the research and clinical trial front, that I have been able to keep the Fragile X awareness spreading alive!

But, it was time to write something. I have been feeling so blessed lately, yet my everyday life has been harder and busier than ever. My husband and I both have jobs, we have health insurance, our sons are happy and healthy. Really, what more matters?

My Fragile X involvement is increasing at lightening speed...parent resource groups are partnering with local "FX clinics" to provide broader and better services to families. I feel like I will have some "help" finally in having a place where parents can go and meet other parents and professionals and get services for their children.

The Board of Education position has proven to be a challenging one. I was elected 6 months ago, 17 months into contract negotiations with the teachers union that is now 23 months old. To say it has been a big learning curve is an understatement. It's a huge time commitment for a thankless elected volunteer position. The morale and the emotional climate in town is deteriorating at a warped speed, as any negotiations at this point in the statutory process are via a 3rd neutral party, so there's not even any communication between the two sides, very sad. I am not on the negotiating committee (thankfully) nor would I ever want to be,

I am in awe of elected political officials. I don't care what side you root for, I don't care what party you're affiliated with, but I just want to say thanks to all of them.

Being elected to any position sort of opens up a door where people feel entitled to say or do anything to you, even though, they don't even know your last name. The misinformation that travels around is pretty scary too. I have been accused of so many things in the past few weeks, it's pretty shocking.

Anyway....so the Holidays are right around the corner! I don't really look forward to it all. It reminds me that my children will never fully understand the spiritual or commercial aspects of it. We put up the tree, we do the Santa thing, take holiday photos, we go to church....it just all seems lost on them. I don't think they really care either way. They do like seeing family and spending time together with others, so that's the focus of our holidays, time spent with others.

It's sort of like when you first get a diagnosis that your child isn't "normal" and you have to grieve for loss of the child that you thought you'd have, and nurture a different child. There are events that remind you of that grief you walk around with, like holidays, whether it's Halloween, Thanksgiving or Christmas...it doesn't matter, my holiday is very different from most people I know. Sometimes it's miserable for me, and sometimes there's nothing I can't do and I move forward.

Can you tell what kind of day I'm having?

That's my resolution for 2010....to spend more time with others. I need to take a step back from trying to change the world and make it a better place, and take my kids out more. I need to move forward from the grief that rears it's ugly head at any given moment and stay focused on the positive.

I need to remember that my boys are more precious than most, that my husband is a rare gem who supports everything I do, no matter what. I have to remember that we're healthy and we have each other, and that not much else matters.

Thanks for listening!

Clinical Tests Begin on Medication to Correct Fragile X Defect

2009-11-03T15:18:00.001-05:00

NIH-supported scientists at Seaside Therapeutics in Cambridge, Mass., are beginning a clinical trial of a potential medication designed to correct a central neurochemical defect underlying Fragile X syndrome, the most common inherited cause of intellectual disability. There has to date been no medication that could alter the disorder’s neurologic abnormalities. The study will evaluate safety, tolerability, and optimal dosage in healthy volunteers.

The work is the outcome of basic research that traced how an error in the fragile X mental retardation gene (FMR1) leads to changes in brain connections, called synapses. The changes in turn appear to be the mechanism for learning deficits in Fragile X syndrome. The new trial tests Seaside Therapeutics’ novel compound, STX107, that selectively and potently targets the synaptic defect.

Thomas R. Insel, M.D., director of the National Institute of Mental Health, said, "This project is the culmination of years of fundamental research, first identifying the genetic mutation and later deciphering the biochemical consequences of this mutation. Now, with the initiation of this first clinical study, we move one step closer to understanding how this novel candidate may play a critical role in improving the lives of individuals with Fragile X Syndrome."

Randall Carpenter, M.D., president and chief executive officer of Seaside Therapeutics, and Mark Bear, Ph.D., Seaside’s scientific founder, are leading the research. Dr. Bear is a Howard Hughes Medical Institute investigator and a professor of neuroscience at the Massachusetts Institute of Technology, Cambridge, Mass.

The National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Neurological Disorders and Stroke (NINDS) have provided grant support. Private foundations providing funding include the advocacy groups Autism Speaks and FRAXA Research Foundation.

Fragile X syndrome is the most common inherited cause of intellectual disability, affecting an estimated 1 in 4,000 males and 1 in 6,000 females.

The syndrome causes a range of developmental problems, including learning disabilities and cognitive impairment. People with Fragile X syndrome may have anxiety and attention deficit hyperactivity disorder. About one-third of males with Fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Usually, males, who have only a single X chromosome, are more severely affected than females.

People with Fragile X have DNA mutations in the FMR1 gene that, in effect, turn off the gene. Research in recent years by Dr. Bear and colleagues has identified the molecular consequences of this silencing of FMR1. Normally, the protein product of the FMR1 gene acts to dampen the synthesis of proteins at synapses that are stimulated via a specific class of receptors on brain cell — metabotropic glutamate receptors (mGluRs). Without the brake provided by FMR protein, synaptic protein synthesis is excessive and connections do not develop normally.

This basic research provided the basis on which to develop medications that could correct the defect.

The current study will focus on a compound, designated STX107, that selectively inhibits one type of mGluR receptor, mGluR5. Evidence in mice with Fragile X-like symptoms suggests that reducing levels of mGluR5 can restore normal synaptic protein synthesis and improve function.

The initial phase 1 study of STX107 will involve healthy volunteers. If results suggest that the medication is safe and tolerable, the study will progress to a phase 2 test of dosage and efficacy in adults with Fragile X syndrome. If STX107 shows promise in adults, the compound will be assessed for pediatric safety (with funding from the Best Pharmaceuticals for Children Act [http://bpca.nichd.nih.gov/about/index.cfm] through NICHD) prior to initiating clinical trials in children.

For more information on clinical trials related to Fragile X syndrome, go to http://clinicaltrials.gov/.

The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure. For more information, visit www.nimh.nih.gov.

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute’s Web site at http://www.nichd.nih.gov.

NINDS (www.ninds.nih.gov) is the nation's primary supporter of biomedical research on the brain and nervous system.
The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

Raising Children with Autism - Oprah.com

2009-09-07T21:58:00.000-04:00

Raising Children with Autism - Oprah.com

Spreading Hope and Help for Fragile X - UC Davis Medical Center - UC Davis Health System

2009-07-06T22:37:00.001-04:00

Spreading Hope and Help for Fragile X - UC Davis Medical Center - UC Davis Health System

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Fragile X gains momentum

2009-06-05T09:33:00.001-04:00

Fragile X gains momentum

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April Catch-Up

2009-04-30T12:40:00.005-04:00

Wow! I cannot believe that April ends today! Where did it go? I'm trying to think of the things that went on in April....

Month started out great...got a new cell phone, since my "new every 2" had come up! I had the LG Chocolate, but the very first one, before they switched from a touch wheel to a click wheel...to say my cell phone made me unhappy was an understatement. But I kept it...I hate to pay retail for anything, so I didn't see the point of paying $300 for the phone I wanted just b/c my contract hadn't expired. Had Verizon been able to offer their service for an iPhone....I would have gotten that in a MINUTE! So, now I have the LG Envy 2...and I LOVE IT! It makes my life a lot better...and I can answer my phone whenever it rings, and not just some of the time!

Saw Rick Springfield in NYC on April 3rd...you know, I thought I was on the "outs" with him...sort of waning in my "fandom"...not really trying hard to make the effort to get tickets...not seeing EVERY show in 100 miles of my home. I missed a show I had tickets to take Anthony and the boys to the night before (4/2) b/c of a Board of Education candidate night.

So, I went. Alone. I didn't meet up with anyone, just took the bus, walked to the theater, saw the show, walked back to the bus and went home. Rick was great, which I guess is why I go.

My grandfather passed on Palm Sunday....I had posted that before...I'm glad he's no longer living the way he didn't want to...he has peace, we all have peace...somethings are meant to be.

We canceled our trip to the Dominican Republic, but I am a big believer in buying the insurance, so we're trying to reschedule that trip for a week in August once the boys finish with camp. It is proving to be a bit of a challenge to find a spot out of the hurricane danger zone in August, but I have narrowed it down to Costa Rica or Cabo San Lucas...we'll flip a coin and that will be it.

Sooner than that, Anthony and I are leaving for Paris on 5/13...for an early 15th year anniversary trip....last time we took a trip away was for our 7th anniversary (Matty was 4 and there was no Ben!) when we went to Las Vegas...but that trip was Rick related too, and friends of ours were there at the same time, so it was a TON of fun all over the place!
So, now, we're going to Paris...I haven't been in exactly 20 years...and Anthony's never been. I am so thrilled and so lucky to be taking such a trip with my husband...I have planned a "thing" for us to do each day we are there...like a lunch cruise on the Seine, brunch at the Eiffel Tower, a wine and cheese tasting, museum pass, etc....with plenty of time for random walking around, shopping ( you didn't think I would forget to budget time and $$ for that, did you?) and just taking it all in. This is where we are staying...a boutique hotel....can't wait!

Fingers crossed that we pull it off and get on the plane...b/c as you know, in my life, there is always "something."

My something right now is my dad. He took a nasty spill back in February, and is still healing a fractured vertebrae since then, but has recently complicated things with a tough bout of strep throat as well as prostate issues (which also plagued his dad, and have been problematic for many years for my dad). So, my mom, trying to get through the day after losing her dad, has been spending all her time and energy running my dad to and from the ER multiple times in April, to and from the doctor multiple times, and running herself ragged.
Today, when I talked to her, was the first time that I felt like things are going to be OK...my dad is more mobile, seems to be managing his prostate and his pain today...and my mom sounded like she was able to rest.

Please just keep him in your thoughts....even my boys are worried about him. We tried to go see him last Saturday after soccer, since they let me know that they would not be able to come to Matty's party on Sunday....so we get on the NJ Turnpike and then this..

After 2 hours in the car and 5 miles, we were able to finally get off the NJT took the kids out for dinner and called it a day...very frustrating.

I re-couped nicely with some special friends that night at a little Ladies Night...thanks Bela...you and your low fat cheesecake rocked!

Have crossed the 20 lb mark with Weight Watchers....22 lost to be exact...about 10 more to go...the hardest 10 to date....gosh my body is stubborn @ 40! No worries, I WILL get it done :-)

I won a seat on the Marlboro Board of Education....I can't believe it still! I came in 2nd out of 7 candidates, and I am beyond thrilled to have this opportunity. I know that my skin will have to thicken since I do take things personally, and haters will always be there, and people who don't know anything about me will make nasty comments, but I say BRING IT! You have NO IDEA who I am and what I am made of.
The current Board members have offered me their help and have taken time to bring me up to speed on issues and I am so happy to be working with a very cohesive group that respects each other, no matter how each individual stands on an issue. They understand that people are individuals and deserve respect, no matter what. More on that later...getting sworn in Tuesday 5/5 at the Board Meeting...Anthony and the boys will come to see me become a part of the Board!

Planning a regional FX conference for Fall 2009....still in the planning stages, working with NJ and NY group...lots of work, but it's going to be good!

That's all I got for now!Here's what happens when you tell your kids that they can "look" at your digital camera while you're driving!

2009-04-27T09:57:00.000-04:00

Happy 12th Birthday Matthew Blaise Fasciano! We love you very much and we hope that you had a great birthday party yesterday! Love, Mommy, Daddy and Benjamin!

3 seats up for grabs on Marlboro board | newstranscript.gmnews.com | News Transcript

2009-04-15T09:16:00.001-04:00

3 seats up for grabs on Marlboro board | newstranscript.gmnews.com | News Transcript

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Stretch Funeral Home - Funerals and Cremations in Havertown, PA Urbanelli, Mario

2009-04-12T21:47:00.001-04:00

Stretch Funeral Home - Funerals and Cremations in Havertown, PA Urbanelli, Mario

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HOW TO: Get the Most Out of Status Updates

2009-04-09T21:59:00.001-04:00

HOW TO: Get the Most Out of Status Updates

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Rest in Peace...my dear sweet Nonno

2009-04-06T21:03:00.004-04:00

My last living grandparent passed yesterday. My Nonno was 92 years old, and he was my mom's dad. He passed peacefully in his sleep and felt no pain...really, that's the way to go if you ask me. He lived 9 long years without his wife, my grandmother and he missed her every moment. He's in a better place, with her, and I am at peace with the whole thing.
I'm sad for my mom, as he was her "charge" and she looked after him, much the way she raised her 3 children and helped me with my 2. My mom is a care-giver by nature, that's her gig and she's good at it, so unlike me. Ha!
Since it's Holy Week, we're not able to bury him until next Monday (OY!)...so it's going to be a little of a long week for us all. And our vacation to the Dominican Republic has been canceled, since we were leaving Saturday for a week away....we couldn't do that to my grandfather. We'll go another time.
Please say a prayer for him, Mario Urbanelli...he was very special and he will be missed.

Court: Girl Can Sue Over Fragile X From Purchased Sperm

2009-04-03T09:53:00.001-04:00

Lawsuit pending from a 13 year old girl with Fragile X who was conceived via IVF....

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End the R Word Day 03.31.09

2009-03-31T14:16:00.000-04:00

Parenting a Child with a Disability - From Real Simple Magazine

2009-03-23T19:57:00.002-04:00

I love it when other parents (who know how to write, unlike me) put their perspective about raising a special child into words like this...it's very powerful and yet it so true...the things we deem as accomplishments vs. things that really don't matter in my world.....this came across the FX Listserv I follow and I was drawn to it....enjoy! PF

Parenting a Child With a Disability

A powerful essay about parenting a child with a disability by Judith Scott, runner-up of the Life Lessons essay-contest.
by Judith Scott

As her name is called in standard alphabetical order, the little girl careens haphazardly across the stage, blinking in the
harsh auditorium lights. Her gait is uneven and her orthotics squeak, but nobody seems to notice or care. Her eyes dart behind
the lenses of her glasses, and her hands flap in excitement. A teacher guides the child toward the principal, who holds the
diplomas. The child’s blond hair falls over her face as she grasps the principal’s hand in the semblance of a shake. A hush
falls over the crowd as the girl progresses to the stairs, feels for the first step, and carefully descends. Despite the earlier
statement to hold all applause until the ceremony’s end, this group cannot hold back. The clapping is thunderous, a whistle
here and there, an acknowledgement of the gargantuan effort not only today but on all days. A mother’s sniff and gulp, tears
not quite held back, will be heard on the video later on. That mother is me.

Emily is perfect to us, but by no other standards does she meet that criteria. From the moment of her conception, extra genetic
material on one of her chromosomes renders her a child with disabilities across the board. That isn’t information our family
can process in one fell swoop, so we chip away, day by day. We try to assimilate the unexpected into our lives. Medical problems
abound, most beyond our experience or ken. First Emily’s tied tongue, which precludes her nursing, followed by other physical
anomalies―a heart that needs major repair at seven months, abdominal surgery, then kidney surgery. But the carving and crafting
of a more serviceable little body cannot hide the truth. Some things, despite our sincerest hopes, our most heartfelt prayers,
our howls in an empty room, have no cure at all. For these things, there is only a pervasive sadness, then after a very long
while, an admiration that sneaks in to surprise us out of our grief.

Our daughter’s youngest years are characterized by early intervention; a phalanx of specialists form a team to help Emily
be the best little girl she can be. From the get-go, she’s a tough client, struggling against physical therapy designed to
make her muscles more pliant, railing against the occupational therapist’s attempts to calm her. Emily’s iron will is a challenge,
but a godsend all the same. Strides are eventually made, and hopes lift. When she sits at 10 months (late), attempts to communicate
at 2 1/2 (very late), and finally walks independently at 3 1/2 (extremely late), we celebrate with guarded optimism. Despite
the grim prognosis and the lack of hard data given at the outset, we see progress, albeit glacial at best.

“Special education” is an abstraction we cannot grasp, a phrase, like “global warming,” we know is out there but that doesn’t
fit into our world in any tangible way. But now fit it in we must. Beginning with a toddler preschool class, special ed becomes
part of our parenting landscape. It’s a program I’m glad exists for the sake of my child, all the while wishing it away. Teachers,
like the doctors who shepherded us through the early years, cleave to Emily with plans, goals, and love.

Emily at age four is a beautiful child and medically sound after years of specialists and procedures. We are out of the woods
in many ways. Her hair, silken and white blond, coupled with full cheeks, calls to mind a cherub. But the stares have begun,
the curious onlookers who try to reconcile Emily’s normal appearance with the subterranean deficits and delays. What lay hidden
before under the relative sameness of all babies is now self-evident. The difference shows. My daughter will not let me linger
on the pain caused by these stares, though, choosing instead to laugh with glee at the simplicity of a playground swing or
a sandbox or a silly song. She is happiness itself, unaware. She teaches me.

Emily begins kindergarten, and the trappings are the same as with any child: the bus, the backpack, circle time. I visit
her special classroom, a room adjacent to the “real” kindergarten, where my daughter has respite from the overly bright lights,
the fast-moving students, the constant dialogue. The stimulation so necessary to development is oftentimes too much for Emily
to bear. It’s a fine line to balance the movement and peace, so we all veer from one extreme to the other as best we can.
My heart contracts with pride as Emily learns her letters and masters a voice-output device, her mode of communication. But
my heart also contracts with pain as I see the other children swirling on the periphery, capable of so much and with such
ease.
Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause,
joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all
feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which
we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say
they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss
of the perfect life I had planned sits heavy.

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles
for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself.
It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first,
it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into
racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world,
and I embrace it with unabashed selfishness.

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes
along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by
the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening
my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes
in.

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school
became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day
is upon us, as Emily nears completion of fifth grade. This milestone day is marked by students all dressed up, speakers who
wax nostalgic, and a video montage of the kids’ elementary-school years.

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class,
lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into
a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions.
From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize
her walk; they cheer, holler her name.

Who knew that an elementary-school graduation, rife with its tired clichés and tacky streamers, would crystallize all those
years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of
disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift.
No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak,
who does not fit in, who is different wherever she goes, is a lesson to me.

Click here for an interview with Life Lessons contest winner Aldra Robinson, along with her essay, A Witness To Grace.

You just sit down in your thinking chair....and think!

2009-03-11T16:39:00.001-04:00

Benjamin has a kindergarten project that involves him sharing his most prized possession and sharing it with his class.
I quickly decide that his most prized posession, "lovie" which is a tattered old burping cloth he sleeps with (everyone has one!!) is inappropriate since he's going to be 6 in 2 weeks.

I ask him what he'd loves the most and wants to tell his class about and he says "My thinking chair"

I wish I had the red Staples button....that was EASY!

Watch this Public Service Announcement!!!!!!

2009-03-05T09:12:00.001-05:00

Embedded Video

Representative Gregg Harper is a freshman US Representative. He is from Mississippi and has a 19 year old son with Fragile X Syndrome. Representative Harper came to speak with us as a group while we were having our Advocacy Day in Washington and then arranged for us to have a tour of the Capitol with him Wednesday morning before we went to speak to our state Representatives and Senators.

More later.....I promise...but this PSA is great! It was broadcast all over Capitol Hill yesterday while we were there! There was also a feature story in Tuesday's The Hill which is a daily newspaper for people working on Capitol Hill. I have a hard copy of that....but will see if it's online.

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Advocacy Day

2009-02-27T11:09:00.002-05:00

I'm off to Washington DC next week for a couple days. The National Fragile X Foundation organizes their own "Advocacy Day" for parents to meet with their US Senators and Representative to inform them about Fragile X and ask for their support for legislation that supports research and funding for Fragile X.

Anthony and I did it together a few years ago, but I'm going to fly solo this time, going with another FX mom instead.

I'm nervous....as a carrier or FX, I have a fear of speaking with unknown people, though I've had to do it so many times in my life, that I don't think about it so much anymore.

It was hard to juggle this schedule...but we have worked it out. As luck would have it, I need to by at work in the city on Monday, and then gone Tuesday and Wednesday...it's going to a long week. I'll be able to work at home Thursday and Friday....it will work out!

Matty is going up in his dosage of Vyvanse tomorrow....from 30 to 40 mg. It's not been effective recently, but we did notice that when he started taking it a year ago, it was, so we're upping the does. We still will need to add something for anxiety in a week or so...we used Celexa for the past 6 months, with disappointing (no)results.
The problem with meds of this scope is that there is a build up as well as a weaning process, so you lose valuable time trying to see if a med works. His behavior in school is abominable at best, and non-consistent. Mind you, this is a new private school and he was doing great up until the calendar changed to 2009. I knew that after the Christmas holiday it would take him a few weeks to get adjusted again, but it's 2 months now, and it just gets worse. I've been there to see for myself. He's the only one (out of 10 students) talking out loud, fidgeting, fussing. Heartbreaking for me to see...but a reality check. I've enlisted the help of a NY FX expert to go and see him in the classroom, consult with the teachers, etc...but it all takes TIME and Matty's the one who is suffering. Whatever, we'll get to where we need to be.

Ben is doing great...he's sailing right along...his writing is improving everyday, his sight vocabulary is broadening each day, he's very funny, very entertaining, his speech is great...I get lots of good feedback from all of his team.

Anthony....poor thing...he's been under the weather for 2 weeks now...told him all along to call his doctor....finally, yesterday he caved...he's going on Monday. I keep telling him (based upon the symptoms I see and he's described to me) he has a sinus infection...we'll see if I'm right or not.

Total weight loss to date....16 lbs! Half way there....in just 8 weeks! WOOOHOOO!!!!

And you know, how I have nothing to do, right?

I have decided to run for a seat on Marlboro's Board of Education. There are 3 vacant seats, 2 of the current holders are running for re-election and 3 people ( me being 1) are running as well. Don't you think they could use someone with my perspective...there is only 1 woman there now...and they have no one who has children with special needs. It's not a political board, so I don't think anyone will accuse me of having an agenda, which I don't. I just want to give back to my town. I feel like Marlboro has done the right thing by my children to date, and I feel like a lot of things relating to special needs are not understood by the town as a whole.

Election is April 21...if you live in Marlboro and you're reading this, I would appreciate your vote!

More after Washington...photos too, I promise!

Benjamin - Rock Star in Progress....

2009-02-08T08:10:00.001-05:00

Embedded Video

a tiny snippet from young Ben's winter concert on Friday...he was adorable!

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Rick Springfield Thursday...Happy Birthday Anthony!

2009-02-05T12:05:00.003-05:00

Rick Springfield - Take A Hand
Uploaded by jpdc11

First, Happy Birthday to my husband Anthony! I love you and YOU are my FAVORITE Rock Star....and I ADORE You!

Now....on with this show...this is easily one of my favorite Rick songs...this is from before Jessie's Girl...has to be from the late 1970s!!

Enjoy!

I've been a bad blogger

2009-02-02T10:05:00.001-05:00

I haven't blogged about anything noteworthy in what seems like months. I don't know why...though I have been very busy lately.

The Fascianos are doing well...keeping our heads above water during this winter. Boys are good.

Turns out, after taking Matty to his neuro for an emergency visit in mid-January b/c of really negative behavior in school, that it turns out he's in stage 4 of puberty (out of 5). Who knew? He's about 2.5 to 3 years ahead of where he should be in terms of puberty. They measure by the amount and length of pubic hair, size of testicles, etc....stage 4 out of 5!!!!!! He's not 12 until April. His voice is changing, he's moody and definitely has reached the point where showering daily is a must. I feel for him, he's not really understanding what's happening to his body, and you can explain away, but he has a limited understanding. Like everything else, we'll get through it.

Benjamin is having a tough time eating with no front teeth, and I'm surprised. He was averse to eating anything for a while, though now he's back on track. His new ones are coming in. He's doing great in school.

Anthony is working 100% of the time in NYC....do I even need to mention how unhappy it makes him to do that commute everyday? Whatever, it is what it is....not much can be done to change that in this economy.

Me? Working....3 days a week now...1 day in NYC....2 days at home. It's perfect for me. I love my work and it's completely manageable.

Not sure why I'm embarrassed to say this, but I returned to Weight Watchers after a miserable last couple of years of simply working out and not monitoring food....that didn't work quite as I thought it would, though I am in pretty good shape now....I'm still too big. I was so miserable about my size...that in late 2008, I was almost paralyzed by it, but since returning to WW 1/5/09, I've lost 10 lbs, close to the 10% lost mark, which is huge...it will take me a few more months to get to goal, but I'm not stopping unil I become a lifetime member. Last time I did WW was after I had Matty, the weight melted away...but then once I lost the weight I stopped going...no idea why...I guess I knew I wasn't done having children, so I figured I'd wait until then....well, Ben's almost 6 now...I am WAY overdue. Better late than never. I love WW, it's real food, it's a lifestyle, and I am embracing it.

We have a bunch of things going on...we're going to VT in a few weeks for the long holiday weekend and to see Anthony's family up there...very excited about that...my other SIL and her husband and kids are coming to...so the 8 cousins will all be together.

We're contemplating the Easter trip this year...we need to replace all the windows in the house...and we have a couple other projects brewing, so we're trying to figure it all out.

Anthony and I are officially going to Paris in mid-May...I'm beyond excited about that...that's about 10 years over due but I'm sure it will be well worth the wait.

I'm on Facebook way more than I should be, but truth be told, I'm fascinated by it, as juvenile as it is.

I'm hoping to be able to go to Washington DC in early Marsh to attend a Fragile X Advocacy Day sponsored by the NFXF which is where they arrange for you to meet with your legislators and you go and tell your story about your kids and ask that they support legislation that supports funding for research for FX.

I'm also thinking about running for one of 3 vacant seats on our local School Board of Education. Not sure how welcome I would be as a mom of 2 kids with special needs, and a mom of no typically developing children....people might think I have an agenda.

Everything else is pretty good...I cannot complain.

I promise to be more diligent about blogging

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Christmas 2008

2008-12-30T20:51:00.001-05:00

Picasa Web Albums - Paula - Christmas 2008

Some photos I took Christmas Day 2008!

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The real meaning of Christmas....according to my school district

2008-12-23T14:57:00.001-05:00

By Lao Tzu
“Do you know that happiness, the sheer joy in being alive, is within your reach? All you need is an attitude of gratitude. Gratitude creates happiness because it makes us feel full, complete; it’s the recognition that we have all we need, at least in this moment.

Recent scientific research has begun to indicate that positive emotions, such as gratitude and love, strengthen and enhance the immune system, enabling the body to resist disease and recover more quickly from illness through the release of endorphins into the blood stream. Endorphins are the body’s natural painkillers. Among other effects, they stimulate dilation of the blood vessels, which leads to a relaxed heart.

What this means is that the more we experience a sense of gratitude, we literally bathe ourselves in good hormones and feel happier and more content with our lives. Like most great spiritual truths, gratitude is stunningly simple. This is not to say it’s necessarily easy to practice. All kinds of distractions, obfuscation, and negative attitudes from our upbringings may get in the way. But all you really have to do to receive gratitude’s gifts is to make a commitment to be thankful on a daily basis, and the world will be suddenly transformed into a beautiful wonderland in which you are invited to play.

If you look for fulfillment, you will never truly be fulfilled.

If your happiness depends on money, you will never be happy with yourself.

Be content with what you have; rejoice in the way things are.

When you realize there is nothing lacking, the whole world belongs to you.”

A surprising, yet poignant e-mail I received from the superintendent of my school district today that I wanted to share!
It's a nice reminder of what matters.
I certainly needed it after what feels like weeks of running a never ending marathon all in the name of trying to please everyone on my Christmas list.
I should have just printed this on a card and handed one to everyone instead of buying them gifts! ;-)

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All I Want For Christmas Is My Two Front Teeth!!!!

2008-12-21T20:47:00.000-05:00

Ways to beat stress this year

2008-12-16T21:42:00.001-05:00

Kiss Off Stress

Ten ways to beat stress in 10 minutes or less.

By Alison Kotch, Best Life (from http://health.msn.com)

Did you know that the holiday season is the time of the year when you're most likely to die from a heart attack? According to research at the University of California, the deadliest day is Christmas, when you're 5 percent more likely to have a cardiac event. Of course, all the key stressors (finance, family, travel) seem destined to be worse this year (they always do). Since a restful night's sleep or an hour at the gym isn't always possible, here are 10 quick ways to stress less.

One second: Swear

Researchers at England's University of East Anglia Norwich looked into leadership styles and found that using swear words can reduce stress and boost camaraderie among coworkers. Good luck!

Five seconds: Pop fish oil

According to research from the University of Pittsburgh, people with the highest blood levels of EPA and DHA omega-3 fatty acids are happier, less impulsive, and more agreeable. Try a daily supplement of 400 milligrams each of EPA and DHA fish oils.

10 seconds: Eat dark chocolate

A study published in Proceedings of the National Academy of Sciences showed that the flavonoids in cocoa relax your body's blood vessels. Look for low-fat dark chocolate, which has more stress-busting flavonoids than milk chocolate.

30 seconds: Know your hoku

Acupressure is a quick tension releaser, according to researchers at Hong Kong Polytechnic University who found it can reduce stress by up to 39 percent. For fast relief, massage your hoku (the fleshy part between the thumb and index finger) for 20 to 30 seconds. "This is the universal pressure point for easing upper-body tension," says Patrice Winter, a spokeswoman for the American Physical Therapy Association.

30 seconds: Sit back

Forget what you've been told about sitting up straight to relieve tension in your back. Researchers at the University of Alberta Hospital in Canada found that leaning back at a 135-degree angle is the best sitting position for alleviating back pain.

One minute: Add garlic

Researchers at the University of Alabama at Birmingham believe they've figured out why garlic is good for heart health, and their finding implies it's a powerful stress buster too. When you digest garlic's main ingredient, organosulfur allicin, your body produces hydrogen sulfide, which relaxes blood vessels and increases blood flow.

Three minutes: Brew tea

In a study at University College in London, 75 men were given tea before completing two stressful tasks. Afterward, their cortisol levels dropped an average of 47 percent, compared with 27 percent for men who weren't given tea.

Five minutes: Take a YouTube timeout

Just the anticipation of laughing decreases the stress hormones dopac, cortisol, and epinephrine by 38, 39, and 70 percent, respectively, according to researchers at Loma Linda University in California. And when researchers at the University of Maryland showed short movie clips to study participants, those who watched funny films experienced a 22 percent increase in blood flow to their hearts.

Eight minutes: Budget wisely

"Money is the biggest source of stress for a man during the holidays," says Bonnie Eaker Weil, Ph.D., author of Financial Infidelity. And with good reason: Men who avoid making budgets spend an average of 36 percent more on holiday gifts than those who don't, according to a 2002 survey. So go easy on your wallet and your heart. Sit down with your wife and quickly calculate how much you two want to spend on gifts this year.

10 minutes: Just do it

Kissing or hugging your wife can reduce stress because it raises levels of oxytocin, the hormone associated with bonding and love, say researchers at the University of North Carolina. And a Scottish researcher found that having sex regularly lowers anxiety, stress, and blood pressure.

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Two of my Favorites in one photo!

2008-12-05T16:04:00.002-05:00

OK, I'm not the world's biggest fan of Madonna....but I do listen to all her music, and her personal life aside, I do admire how hard she worked to get to where she is professionally. She's a marketing genius and has reinvented herself so many times that even today, at age 50, she's still current.
Suggest you search You Tube and search 'Madonna Argentina'....she played there the other night and sang "Don't Cry For me Argentina" from Evita....and it's GREAT! The crowd is AMAZING....they totally sing along with her....it's like seeing Bruce Springsteen at the Stone Pony in Asbury Park and hearing him sing "Jersey Girl."
and then....the focus point in the photograph.....
Louis Vuitton....what can I say....I know...I KNOW... it's so frivolous, so vain, so not necessary in this economy, in this country, in the current state of the world, on this planet....but I'm a girl who enjoys her LV handbag (ducks)....and to say that I waited a LONG time to own one ( 21 long years from my first mental suggestion that I should own one)...makes me cherish mine even more.....
AND
Marc Jacobs (LOVE HIM) designed this bag....( BTW...that's on my next lifetime's "to do list"....a Marc Jacobs bag...but if you can imagine, it's about 2x the cost of my LV...so THERE)!
I highly recommend Marc's new fragrance...."Pear".....DELICIOUS!!!!!!
Enjoy!

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This Blog Measures Up Award

2008-12-05T12:31:00.002-05:00

1. Say one nice thing to a man in your life.

Normally, this would be a no brainer for me...and my husband's a great one and an excellent dad as well. However, he's on my last nerve this week...and he's not been as helpful as he's been in the past....he's completely swamped with his new job, and I do get that. It's just that with both of us working, he needs to help out a little more...I think he got a bit spoiled when I got laid off in July and took over the reigns of all the goings on...now that I'm working once again, he needs to step it up a bit ( right my love?) and HELP!!

2. List at least six ways that you measure success in your life (or for your blog).

1. I'm successful when my boys are smiling 2. I'm successful when I am working...period. 3. Success is when there is no tragedy in a day....when you close your eyes at night, and your family is all safe and asleep in their beds. 4. Success is achieving a balance between what you want to do and what you have to do. 5. You can measure success by the way you feel when you complete something. 6. Success is when dinner tastes great...is still hot when you sit down to eat it...and is enjoyed by all!

3. Assign this award to five other blogs and leave them a comment telling the blogger that you’ve assigned them this award.

I’m awarding this to…

KC
ASP
Aim
Kristie
Ally

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Bad Karma...

2008-12-03T21:21:00.002-05:00

So...my post about Thanksgiving was a bit on the negative...sorry about that....I had no idea what a crappy day could be...until today.
Today was a day for me to run errands and get things done....I started as soon as the boys went off to school.
I had to go to the grocery store for two items....milk and those Tostitos with a hint of lime...they are Matty's all time favorite snack food, and we ran out like Sunday and he's been asking me each day if I got them. My regular grocery store didn't have them, so extra stop # 1 was to a 2nd grocery store...mind you, my grocer wasn't out of them, their display looked as though they NEVER carried them...UGH! I find them at the 2nd store and buy 3 bags...so as not not have to shop for them again this week.
Then I go pick up the Christmas picture cards....get home, short an 8x10 and have to return the 4x8 envelopes they gave me Sunday b/c when I pick up the cards today, turns out they are 5x7...it never ended. Again....UGH!
Take Ben to Wendy's for lunch ( his choice...he likes to dine in) and we wait 25 minutes IN LINE TO ORDER...he's patient as can be....it's where he wants his lunch from...me, I was ready for a straight jacket. UGH.
Then I go to buy my bus ticket to go to the city tomorrow...and the place I get them from has their ticket machine missing...out for audit...um, WTH?
Every phone call I made, I didn't reach anyone....
It was just a non-productive, defeated day for me....I'm DONE!!
Tomorrow is my day this week in the city....I'm BEYOND excited to get out of this house and get dressed up like an adult and talk to OTHER ADULTS!!! It's my company's Christmas party as well...so there's an added bonus!

More Later....it's GOT to get BETTER....right?

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Happy Thanksgiving!

2008-11-26T10:02:00.004-05:00

I only have a couple of hours before the boys come home today ( there's NEVER school in this town!).

We're going to my parents for Thanksgiving, outside of Philadelphia. We pretty much go every year. It's a staple. I never pushed hard to make the move to my home for a holiday, so we usually drive somewhere. Even when Matty was a baby, we schlepped him constantly. And I love my home, and it's beautiful, spacious, and we have a new state of the art kitchen....I kept waiting for my mom to surrender Thanksgiving...but she didn't, so the kitchen in my home will be empty. She also asked me not to bring anything, though I offered.

That leads me to a bigger thing...I think my mom thinks I'm not capable of doing things. I know, that sounds harsh. She has told me on occasion that she "doesn't know how I do it"...husband, 2 kids, job, after school activities, all the running around.

That said, I think she still thinks that I'm 11 in some respect. I think that she feels like I can't/ won't do something the way she does it, so she'd rather I didn't do it.

For instance, I offered to being dessert. She said that she had already, to please not bring anything else. Now, I know that she knows that if I were to bring dessert, there would be chocolate involved....my boys love it, my husband loves it, and I love it. I know my dad likes it, as do my siblings. My mom doesn't eat it, as she claims that the caffeine in a morsel of chocolate can keep her up for days. So, she'll have a pumpkin pie, and an apple pie ( I don't eat either...neither do my kids) and that's it. If I promised to not bring chocolate, she still would protest, saying it's too much food. See where I'm going? There's her way...and that's pretty much it.

I love her, she's my mom, but she's pretty much the opposite of me, and I have had to come to terms with that. We'll go tomorrow....empty handed because that's how she wants it. One year, we ordered and sent a floral arrangement ahead of time for her to use as a centerpiece...it stayed in the kitchen, not the dining room. Wine comes home with us, un-opened usually. It's just the way it goes. What's funny is that on the rare occasion I have hosted a holiday...a few Christmas Eves and Days...not only does she offer to make some things....but I LET HER. It's a one way street though.

Ask her to do something for you? She's always agreeable...never protests. In fact, we're leaving the boys there Thanksgiving night since we have a 40th birthday party to attend Friday in NYC. She was more than thrilled to keep my children over night. She'll drive (60 miles) to my home....stay with my kids...cook dinner and go home. Really, she's amazing.

So, I'm thankful...to not have to cook (anything) for the Holiday. I'm thankful that my kids will have a great time, my husband and dad will watch hours of football (laptops in lap for fantasy football purposes).
I'm thankful for everything around me...Anthony, who is a great husband and father, great kids, beautiful life we're continually building around us. It's really all good here. Fragile X doesn't stop us, it's just gives us a sense of perspective.
I watch the news, and it's so depressing. I feel for those out of work, those in foreclosure, those that can't pay their bills. I credit my husband, though the $$$ we've lost in the market in 2008 would have been nice, we don't need it to live. He keeps us on a budget and watches the numbers so closely....I could never do it...I'm too much of a spender....which he lets me do..and reigns me in when I need it. I appreciate him and think the only reason we're OK in this economy is because of all the sacrifice we've made over the last 15 years, the living within our means, and that's all because of Anthony.
Sorry for such a multi-tangent post....I guess I have a LOT on my mind.....
Thanks for listening!
Happy Thanksgiving!!!

Refugee

2008-11-24T12:34:00.001-05:00

This was funny...for many reasons! Thanks Aim!

I only have 2000 songs on my iPod....I say only b/c it can hold 8000. I'm surprised at the Shuffle songs that came up....

By my answers, you'll see how varied my music tastes are!
1. Put your music on shuffle.
2. For each question, press the next button to get your answer.
3. YOU MUST WRITE THAT SONG NAME DOWN NO MATTER HOW SILLY IT SOUNDS!
4. Tag ** friends who might enjoy doing the meme as well as the person you got the meme from.

IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
"Don't Come Around Here No More" - Tom Petty & The Heartbreakers
WHAT WOULD BEST DESCRIBE YOUR PERSONALITY?
"Lio" - Rick Springfield
WHAT DO YOU LIKE IN A GUY/GIRL?
"Silent Night" - Andy Williams
HOW DO YOU FEEL TODAY?
"Talk About Us" - Jennifer Lopez
WHAT IS YOUR LIFE'S PURPOSE??
"Runnin Down a Dream" - Tom Petty & The Heartbreakers
WHAT IS YOUR MOTTO?
"Charade" - Kevin Spacey ( from the Beyond The Sea Soundtrack)
WHAT DO YOUR FRIENDS THINK OF YOU?
"Help Yourself" Tom Jones
WHAT DO YOU THINK ABOUT VERY OFTEN?
"The Reflex" - Duran Duran
WHAT DO YOU THINK OF YOUR BEST FRIEND?
"Here it Comes II" - INXS
WHAT DO YOU THINK OF THE PERSON YOU LIKE?
"Play Me" - Neil Diamond
WHAT IS YOUR LIFE STORY?
"Dirty World" - Traveling Wilburys
WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
"Split Decision" - Steve Winwood
WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
"Con Le Mani" (With your Hands) - Zucchero
WHAT DO YOUR PARENTS THINK OF YOU?
"Carry Me Away" Rick Springfield
WHAT WILL YOU DANCE TO AT YOUR WEDDING?
"Like it or Not" - Madonna
WHAT WILL THEY PLAY AT YOUR FUNERAL?
"You'll See" - Madonna
WHAT IS YOUR HOBBY/INTEREST?
"Color Me Gone "- The Squirts
WHAT IS YOUR BIGGEST SECRET?
"Bits and Pieces" - Nelson
WHAT DO YOU THINK OF YOUR FRIENDS?
"Crazy" - Gnarls Barkley
WHAT'S THE WORST THING THAT COULD HAPPEN?
"A Nightingale Sang in Berkeley Square" - Rod Stewart
HOW WILL YOU DIE?
"Up on the Roof" - James Taylor
WHAT IS THE ONE THING YOU REGRET?
"Love Somebody" - Rick Springfield
WHAT MAKES YOU LAUGH?
""Better Man" - Pearl Jam
WHAT MAKES YOU CRY?
"Undiscovered" Ashley Simpson
WILL YOU EVER GET MARRIED?
"Fields of Gold" - Sting
WHAT SCARES YOU THE MOST?
"Migra" - Santana
DOES ANYONE LIKE YOU?
"Rest Stop" - Matchbox 20
IF YOU COULD GO BACK IN TIME, WHAT WOULD YOU CHANGE?
"Dance, Dance, Dance"- Steve Miller Band
WHAT HURTS RIGHT NOW?
"Love is Alright Tonite" - Rick Springfield
WHAT WILL YOU POST THIS AS?
"Refugee" - Tom Petty and the Heartbreakers

It was too fun so see what songs were shuffled to each question. Come on and try it! I'm tagging a few people but if you want to just play along, let me know.

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Some Disney Photos

2008-11-13T11:11:00.002-05:00

FB Disney

Well, I truly never thought we'd be able to take this kind of a vacation with the boys, but after years of dreaming about it, worrying about it, and finally planning for it, we did it and the boys had a WONDERFUL time!

I couldn't believe how great they did and how patient and tolerant they were. It was a blessing to be able to take a vacation and to enjoys these boys! My parents had a wonderful time with them and my brother ( who has Fragile X like my boys) had a great time too with his nephews. Everything went very well and we'll have wonderful memories for a lifetime, they way it should be.

Things are slowly getting back to "normal" here....I'm working, went to NY on Monday, got everything I needed and am working from home now.

A did NOT get that job he was vying for (LONG LONG story and not a happy one) but he still has a job and was actually offered a really good one within the company. It's just not the one he wanted and he's struggling with that decision. I am truly heartbroken for him, and I can't do anything to help, which makes me feel awful. His disappointment engulfs him and he's having trouble with every part of his day. I pray he finds peace with this situation.

Boys are slowly getting back to their routines, a week off is a LONG time, so we're all on the gradual path back to not having a moment to ourselves.

Enjoys this sampling of pictures! If you know my kids, you know that a few years ago, a photo op with a character in costume was NOT even a remote possibility. I was beaming as they stood with these characters!

Beautiful Benjamin!

2008-10-26T18:29:00.001-04:00

Not because he's my son....but he's just too cute not to share!! I took these about a week ago, on the day he had school pictures....I couldn't NOT take his picture before he left for school! The last one is him having apple crisp with whipped cream at "his stool" in the new kitchen! I think he likes the kitchen as much as his mommy!

I've been remiss about blogging...

2008-10-23T11:04:00.004-04:00

I feel like I haven't blogged in FOREVER!

First, you'll notice that I've updated the look of this blog...Thank-You Ally for that!!!

So...9 days until Disney....while it's very exciting and we're beyond fortunate to even be going...I can't really get on board with the excitement...maybe because there is SOOO much else happening!

So...A has his new job...he started 10/1...same company, but in NJ and less than 25 minutes from home...to say that is NICE is an understatement. Of course, there's a "glitch" with his position, and it won't be decided until 11/1...so it could all end as quickly as it started and he'd be back in NYC...not good...so we're keeping our fingers crossed that TPTB make the RIGHT decision and A gets to stay in his new position in NJ...enough said there.

Me? Going back to work! You didn't think I could stay home...did you? After being unemployed since July, I was fortunate to get a call from an old friend that changed everything. I will be keeping a similar schedule to what I had....3 days working @ home, but now 1 day in NYC and 1 day....get ready....1 day NOT WORKING! A day to myself each week! Seriously, who's better than me? It's insurance related work, similar to what I was doing @ Marsh...so it's stuff I already know. Really, things like that don't happen to me, where someone comes out of the blue and offers me a job that fits my lifestyle with the boys and I'm really excited about that.

Boys are doing really well....they don't have a minute to rest....everyday after school we have an activity....pretty tiring....Matty is being 11 ( good and bad) and had his new cell phone taken away for sending an inappropriate text message to our sitter....can you imagine? Nothing mean, just a bit sexy for an 11 year old boy and his 17 year old sitter....poor thing...she sent it to me so I could see it for myself, and she's OK with it, she knows he doesn't "get it" but that he rides the bus with much older kids and hears a bunch of colorful things....for example.... a couple weeks ago, Matty was in the kitchen with me and the sitter...and he goes"
Matty: "Hey Mommy...know what XXX told me today on the bus?"
Paula: "No Matty, what did he tell you?"
Matty: "XXX said that Britney Spears is his girlfriend and that she eats his shorts"
Paula: " Wow...Matty, do you know what that means?"
Matty: "It means she smells his underwear"
Paula: " Better never to say things like that Matty....that's completely inappropriate"
Matty: "OK Mommy"

OMG!!!!!!!!!!!!!!!!!! I'm not ready for that...yet...

Benji Boo is doing so great in K...such a good boy...works so hard all day...it's like he does K twice each day the way I set him up...so he's TIRED! After all the after school stuff, he's ready for dinner, bath and bed by 8pm. Such a lovey that Benji!

Kitchen....window treatments ordered...fabric to recover the new chairs ordered...seats are a mint green chenille...not me so much, so I ordered a tobacco colored leather to recover them and I can easily wipe them clean too...

Still coughing...week 5, but not as much anymore...been to the DR so many times....OY! Got the patch for motion sickness for the cruise part of the Disney trip..never been on a boat before....ON PURPOSE...would rather fly around the world and stop in every state and take off again rather than get on a boat...but that's me. It's amazing what you do for your kids!

Loving some of Fall TV...really into True Blood in HBO ( and not normally a big fan of things vampire, but this show is very....interesting) also liking Life on Mars as far as new shows go...and then there's my staples....House, Private Practice, Dirty Sexy Money, Brothers and Sisters, Lipstick Jungle....

oh and did you know that I'm from Philadelphia...HAHAHA!

Um.....GO PHILLIES! Sorry Honey Pie, the Mets gotta be in it to win it...and they aren't in it!

GO PHILLIES!!!!

Pumpkin Picking 2008

2008-10-07T09:08:00.001-04:00

Things are looking good here...we've already been pumpkin picking!! This Holiday is on the "fast track" this year....everything has been sped up just enough....we are leaving on a vacation on 11/2...and so, Halloween needs to be completely put away on 11/1...no time to relish in the after glow of the sugar stupor...so we've started the month long celebration already.
The boys (all 3) are much more fond of this holiday than even Christmas....I don't know why, I personally could do without Halloween. We have as many if not more decorations for Halloween than we do Christmas...and if you know us....that's a LOT of STUFF.
That said, we took the boys pumpkin picking this weekend with our dear friends, The Coppolas... their 3 children are adorable...and are a good mix with my 2...we vacation together, we try to spend as much time together as schedules allow. The husbands have been friends since high school....so even as couples, we go wayyyy back and I just LOVE them!

Here's some pictures..... Please note in the 2nd photo...Ben is literally playing "duck, duck, goose"...He's too much sometimes!

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LOVE THIS!!!!

2008-10-03T21:05:00.001-04:00

Embedded Video

Enough said......such a precious privilege...it shocks me that people DON'T Vote...even in today's world!!!

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New clinic to explore broad effects of Fragile X within families

2008-10-02T15:44:00.001-04:00

Fragile X is the most common known inherited cause of autism and developmental delays, but the genetic disorder can have much deeper and more subtle roots within a family. Lisa Craft, M.D., medical director of a new Fragile X clinic at the Monroe Carell Jr. Children’s Hospital at Vanderbilt, says she hopes to accomplish two goals — helping children reach their fullest potential, and educating families about how deeply the genetic disorder can reach into the extended family.

"We used to think Fragile X was rare, carried by women and affecting their sons. But in the mid-1990s when DNA testing became available, we had to rewrite the book," Craft said. "Now we know the gene affects boys and girls, and that there is a wide spectrum of severity. We also know it can affect adults and that both men and women can be carriers and pass the gene on to their children."

Research now shows men and women who had normal cognitive development as children can develop Fragile X-linked tremors and balance problems in older age. Women can experience early menopause and fertility problems as a result of a Fragile X-linked disorder called primary ovarian insufficiency (POI). Girls can also have the full syndrome, but can go undiagnosed because their normal copy of the X chromosome can cover for their Fragile X.

As a part of their work, the Fragile X Clinic will offer families genetic testing and counseling. Basic science research is also under way at Vanderbilt to find treatments for some of the effects of the disorder.

The Fragile X clinic is part of the Division of Developmental Medicine and Cognition. It is one of 14 clinics linked with National Fragile X Foundation's clinical and research consortium. The disorder is often accompanied by behavior, communication and sensory issues, heart problems, sleep disorders, hearing loss and seizures.

"The goal is to give these families tools to communicate with their children, and routines to reduce stress. It provides a much-needed roadmap and a way for the families to have a better understanding, because most people want to know 'why,'" Craft said.

Contact: Carole Bartoo or Laurie Holloway, 615-322-4747
Carole.bartoo@vanderbilt.edu
Laurie.e.holloway@vanderbilt.edu

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Why can't people use their DELETE key?

2008-09-30T21:16:00.002-04:00

Is it that hard?

I get a LOT of e-mail...seriously, about 250 to 300 messages a day...

Some of it's self-inflicted...i.e., I subscribe to group mailing lists for the following:

Fragile X Syndrome
New Jersey Fragile X
NJ DDD
Special Education Issues
Rick Springfield (let's get real....a girl needs a diversion)
Scrap Booking

All those lists are about 2/3 of my mail....and I scan them all, delete most, save some, reply to some as I wish.

Then I get mail from individuals...and I reply to them all...no matter what...it's like calling someone back when they call you...I try to get to each one in a timely fashion too.

Then...I blog (duh) and I get comments from people who read this blog (which I LOVE to get). I Facebook (which involves e-mail and messages left on my page)

I also get mail as the co-president of the town's special ed PTO....separate e-mail address from my personal one. I read and respond to them....daily.

I subscribe to some stores lists....I get coupons that way....GAP, Banana Republic, Coach, Ann Taylor, Norstrom.....

Then I get the daily prayer chains...funny pictures...snopes tales, poems, quips, you know...and then there's SPAM...I read them all (not the SPAM) , but rarely pass them on.

E-mail is part of my life....

I personally took offense this morning when I got an e-mail from a friend ( a close friend for over 25 years) who ordered me to stop (that was the subject of the e-mail) suggesting fellow (former) High School friends to her on Facebook.

Ummmm.....I think you can easily hit the IGNORE button if you don't want to be their "FRIEND"...I manage to when necessary.

I was totally taken aback...purely offended...accompanying the e-mail was the underlying tone that perhaps I have too much time on my hands that I can find the time to be "friends" with people on Facebook.

Well....I spent the better part of my day annoyed, thanks. Imagine that someone thinks I have time on my hands!!!! WOW...I must be better at acting not overwhelmed than I thought!

Do you know how much stuff I get that I DELETE??????? I would NEVER....EVER....ask a friend of mine to NOT send me things.... I JUST HIT THE FRIGGIN DELETE BUTTON.

This is the second time for this friend to ask me to not send things her way...a couple years ago, it was to please not forward any kind of chain mail....memes, 20 questions, etc....she didn't like them.

Again, why can't you just hit delete????? We all have anti-virus software today....obviously, I'm not going to send you anything offensive or virus contaminated....so what's the big friggin deal??????

SHEEESH!

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The R Word....in a good way!

2008-09-28T22:20:00.002-04:00

Thanks Orah for finding this!

PSA from the ARC of Virginia

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Speed Reading | Study Finds People With Fragile X, Carriers Likely To Have Additional Conditions | Speed Reading Software

2008-09-26T09:08:00.001-04:00

Study Finds People With Fragile X, Carriers Likely To Have Additional Conditions

September 25, 2008People with fragile X syndrome, as well as those who carry the gene, are likely to have additional conditions that include attention problems and anxiety, according to a study by researchers at RTI International. The study, published in the Aug. 15 issue of American Journal of Medical Genetics, surveyed more than 1,000 parents of children who either had fragile X syndrome, the most common inherited cause of intellectual disability, or were a carrier of the disease.

Speed Reading | Study Finds People With Fragile X, Carriers Likely To Have Additional Conditions | Speed Reading Software

Wow....I could have told them that about 9 years ago!!!

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Drugs Hint at Potential Reversal of Autism

2008-09-23T17:10:00.002-04:00

Listen Now

From NPR Morning Edition 9/23/2008

Scientific researchers can spend years in the lab on obscure topics, like how a sea slug remembers or how a fruit fly sees color. But every now and then, a basic scientist makes a discovery that changes human lives.

Mark Bear, who directs the Picower Institute for Learning and Memory at MIT, is one of those basic scientists. He's discovered a system in the brain that could change the lives of thousands of people with the genetic disorder known as Fragile X Syndrome.

Fragile X is a mutation on the X chromosome that can cause mental retardation and autism. Until now, there has been no treatment.

But Bear discovered that the mutation responsible for Fragile X appears to disrupt a system in the brain that regulates synapses — the connections between brain cells. He says the system works a bit like a car.

"You really need both the accelerator and the brake to properly function," Bear says. "In the case of Fragile X, it's like the brakes are missing. So even tapping the accelerator can have the car careening out of control."

Bear and other scientists have also identified several drugs that seem to correct the problem. The drugs don't replace the missing brakes in the brain. Instead, they limit acceleration by reducing the activity of a group of receptors on brain cells known as mGluR5 receptors.

The drugs have reversed most of the effects of Fragile X in mice. They are now being tried in humans. And at least one small study found that a single dose of a drug had an effect.

The implications for people with Fragile X are huge. If the drugs work, people with the disorder could see their IQs rise and their autism diminish.

"It's a dream come true to think that we have the prospect of having gone from really basic science discovery to a potential treatment," Bear says.

Bear's research was funded in part by a group called FRAXA. Katie Clapp and her husband, Michael Tranfaglia, started the group in the early 1990s as a way to help their son Andy, who has Fragile X Syndrome.

Clapp says she now has reason to hope that Andy, who is now 19, can get better.

"We're not expecting a miracle, or to make up for his 19 years of development," she says. "But if we can watch improvement happen, that's a dream."

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Coughing, my Grandfather and Driving

2008-09-22T20:41:00.005-04:00

So, I have this cough...not like a hacking cough when you're sick...but an annoying allergy ( I suspect) driven cough. I don't cough all the time, and it's not wet or yucky...but I have fits that last up to 20 minutes of relentless coughing...short little coughs that go on so long that I have trouble catching my breath, talking, etc....Benji keeps going "Bless You Mommy" each time I cough for more than a few minutes...he thinks I'm sneezing b/c it's so repetitive.
Annoying doesn't really begin to describe it...keeps me up and wakes me from a sound sleep. So I'm cranky to boot!
But I'll be fine....it can't last forever can it?
Other goings on...my mother's birthday was last week, so we went to see her yesterday and went out for a really nice dinner.
My grandfather (he's my mom's dad and he's 92) fell on Friday and required surgery to fix his hip from the fall. He didn't need it replaced, but it had to be repaired. He's going to be in the hospital for a little bit. I went down to my mom's alone on Saturday to stay with my brother and sister, who were visiting for the weekend, and they can't stay alone, they both are fully affected by FX. That way, my mom could stay at the hospital all day with my grandfather. My dad relieved me when he closed his barber shop and I went home to be with my family.
So I'm driving home and I'm thinking....I'm an hour from my home...the hospital is an hour (in the opposite direction of my house) from my parents. It overwhelms me sometimes...the distance. Granted, we're not on opposite coasts...but we're not 2 block away from each other either. It's far away enough that...after going there and home Saturday, there (after soccer), to the hospital to visit and home yesterday... there's almost 400 miles on my car in 36 hours!
Lucky I guess that we have cars and can drive to where we need to be. I think about my mom...66 years old...drives more now and far away ( 65 miles between our homes...PA to NJ) and yet I think back to when I was growing up and she never drove anywhere more than a few miles...ironic. She goes anywhere...bless her heart. When I need her, she comes. I glad for a change, that she needed me, and I was able to help.
Anthony had to manage the boys, but they're so well behaved for him, and they had a soccer game in the middle of the afternoon, so they were busy.
It was busy....please keep my grandfather in your thoughts....I just don't want him to suffer more than he needs to. He's 92 and has had a very long, very full life.

2008-09-16T21:59:00.002-04:00

Thank-You Amy for this blogger award! It's in Portuguese...and the gist of it is that some people are brought together from all over different walks of life...no matter what that is. Blogging is one way that connects different people.

I'm giving the award to some of the blogs I follow:
KC
Kristie
Beth
Suzanne
Amy

The Kitchen Remodel....a summer in photos!

2008-09-13T09:36:00.002-04:00

Well, here it is....about 95% complete (missing are the cafe shutters that will go half-way up the big window in the eating area and a small valance above that)...I'm so happy with the way everything turned out.

I hope you enjoy these photos!

The American Express Scam for Fragile X

2008-09-12T14:36:00.002-04:00

You've heard of races for cures, walks for cures, marathons, etc....you get the drift.
Here's a new twist...you might have noticed for the past 4 weeks I had a logo on the upper right corner of my blog, encouraging people who use American Express to vote for this new "members Projects" that they were promoting, since there was a Fragile X driven project.
And it worked...it received sooooo many votes! As a community, we were very excited...
and then it sort of went away
we were ranked so high
we didn't make the cut
but why not?

So....I've come to find out why....but it's written so beautifully and eloquently HERE
Thank-you Scott Greenfield!

Thank-you from my fellow FX moms Kristie and Beth too....I was reading their blogs today and saw it addressed there too!

9/11 - 7 years later

2008-09-11T09:07:00.002-04:00

Maybe it's because it hit so close to home for me... my husband spared by minutes due to his tardiness on his way to Tower 1 (and, no he didn't work there, but was going for a 1 day seminar).

Especially today...when the weather is eerily reminiscent of the weather that 9/11...when my Matty was 4 and I put him on the bus and then started to run some errands that morning.

I remember every detail of that day. I almost wish I didn't....it's so imprinted in my mind...I cry every time I think about it.

My husband goes by Ground Zero on his way to work everyday...and I know he fights back the tears every time he walks by. I don't know how he does it.

Let's remember those who lost their lives that day and their families, still trying to put the pieces back together.

JETS...Jets, Jets, Jets

2008-09-07T18:14:00.000-04:00

I think Anthony has waited his whole life for the moment this picture was taken.
He has himself, his 2 sons and his wife...all wearing JETS shirts!
Can you tell what today was all about? First JETS game of the season. Look a those BOYS in their official NFL JETS Jerseys!!!! I was teary eyed as we bought them last weekend in preparation.
No, we aren't fair weather fans either....just because the boys are wearing Favre's #4...they wore #10 (Pennington, former QB) the past few years.
Me? Philadelphia Eagles fan in my soul....I remember when the Eagles lost the Superbowl in January 1980 to the Oakland Raiders like it was yesterday...how devastating. JETS Fan ( by marriage) for the past 16 seasons....and truly, I feel such empathy for them as a team....it's been really HARD being a JETS Fan...but my husband NEVER waivers, he'd NEVER root for another team. Just who he is...he's a die hard in everything he does.
My parents came by to see the boys this morning, so we had a photographer in the house!
Oh, and the JETS won too! 2008 Season Record....1-0 BABY!

2008-09-04T10:03:00.002-04:00

So far so good....I can't believe that they are both going to be in school....FINALLY!

Both boys were happy to go...though Ben had a momentary lapse and clog to my leg for about 20 seconds when his bus pulled up....other than that, it's business as usual.

New Hope for Fragile X Treatment

2008-08-28T16:53:00.001-04:00

This is a great article....if I knew how to copy and paste it here...I would, but that's too techy for me...lucky I can post a link!

Almost Wordless Wednesday...

2008-08-27T14:41:00.004-04:00

I just can't....I'm too gabby to be wordless. I'll keep it to a minimum today. So, here is a photo taken 20 years ago SOMEWHERE in Italy....just kidding, pretty sure it's in Sienna. That's my roommate and friend Bibb. We got into all sorts of wacky situations during the year we spent in Bologna, Italy....never any trouble...except Bibb, remember that front tooth you chipped in Venice in St. Mark's Square on Fat Tuesday??? Ha!

Anyhoo....BEFORE.....

And then last month at a NJ Jackals game, a benefit for Fragile X Syndrome......

That's all for now....

It's that time of year...

2008-08-20T21:21:00.004-04:00

When kids leave for college.

I often reminisce back to late summer....1986...when my parents drove me to Dickinson College in Carlisle (PA) for the first time. I remember not being able to contain myself...the anticipation of being "away" from home...the possibility of meeting new people, spending time "finding my way"... ahhhh!

I have friends and family with children leaving for college. I am truly so excited for those that are going...it was by far, the most special time in my life. I still have good friends from that time. In fact, I'm currently trying to help out with the reception celebrating the 20th anniversary of my junior year in Italy with the 25 people I studied with and the professor and his wife that ran the program which is set to take place in NYC on 9/13. My college experience was stellar in every way.

I try not to think about it, but I can't help it. My kids won't have this special life changing experience.

Sure, now there are universities out there for the special needs community...where young adults can live semi-independently, learn life skills, work, etc....where I know I can send my kids.
It's not the same.
It's one of those things....why did I have such a special experience when I won't be able to share that and impart that to my own children?
I notice sometimes that my neighbors complain about the amount of homework their kids have and they claim how they can't help them because they can't remember the simple principles of elementary math...or how to diagram a sentence...or memorizing all 50 state capitals....and I cringe.
Don't they know how lucky they are to have children that can learn those things? Don't they know how crucial all that stuff is in life? I can still visually see in my mind the 1-12 times tables my 3rd grade teacher had on her black board for the 12 days we learned the times tables....I use that vision daily. I won the 5th grade state capital bee...granted, geography has fascinated me since my parents put me on a plane for the first time in 1970...and it's my thing even today.
My kids struggle to learn letters. numbers, phonics, social skills....you know, it's just not fair. I hate it sometimes.
Can you tell I've taken this week to review their IEPs (Individual Education Plan)? To review their goals and make sure all the details are correct.
Ben's reads like a dream...it's all about inclusion ("based upon parent input / request" - so that the district is off the hook should he fail) and goals are designed to make him successful in the mainstream..sitting him upfront, near natural light and away from distraction, prompting when needed, modifying his seat work....sensory input as needed....frequent breaks...
and then there's Matty's IEP....Matty who is going to private school...where there is no inclusion...all the children are special needs.
His IEP needs so much work...making eye contact is still a goal :-(....HELLO....my FX kid does NOT need to make eye contact with YOU...he'll do it when he's comfortable. He's not working towards that....his syndrome make that impossible, i.e., you'll write that his ability to make eye contact impedes his learning at our first progress report meeting. He looks at me...that's all that matters. WHATEVER.
I have sooo much work to do to try to get this fixed or at least documented in the next 2 weeks! I definitely have to call in some favors from the network of experts I've come to rely on over the past 10 years....it's going to be a long night!

A very special peach

2008-08-15T09:26:00.003-04:00

See that peach? Nothing special, just a regular peach, right? A little on the fuzzy side...slightly bruised...but yet ripe and ready to be enjoyed.

That peach came off a tree in my backyard. Off a tree that we planted in the ground when we moved in in 1995. It was nothing more than a 2 foot high weed looking plant at that point. I was skeptical of the whole thing...thinking, it will never grow into a tree, let alone a peach tree? It couldn't possibly bear fruit!

I'm sure some of you reading this think...what's the big deal??...lots of people have trees in their backyard that bear fruit.

My peach trees (there's actually 2 of them, one on each side of my BBQ) came to me in a very unique way. Anthony's dad gave them to us when we bought this house.
Anthony's dad was a NYC cab driver who owned his own cab and made a living that most would envy. He worked 20 hour days, but it was his life and it made him proud. In the late 1980s he started having problems with his legs in the sense that he lost their strength and eventually lost feeling in his legs and was confined to a wheelchair for the last few years of his life. He was never diagnosed with anything other than a degenerative disease of the spine which removed circulation and strength and feeling from his legs.
I only knew him for 5 years, as he passed very suddenly from complications from pneumonia in January 1997, 3 months before Matthew was born. To say that his passing has left a void in my life, Anthony's life and that of our children he never saw is an understatement.
Biagio Fasciano was very special to me. We bonded from the moment we met, and let me tell you, his self-created language of broken Brooklyn English, mixed in with proper and dialect versions of Italian was no small feat to accomplish. He said some of the funniest things I ever heard, and he left an impression on everyone he met.
He was not happy to be in a wheelchair...someone who spent his days and nights driving the streets of the 5 boroughs of NYC, to someone who couldn't easily leave his home. He took up gardening and he and my mother in law had THE most impressive garden on their block. Now remember, it's Brooklyn, so it's 90% cement in the front yard, with a little patch of what's supposed to be grass. Biagio planted dozens upon dozens of vegetables, herbs, etc...it was amazing. We were always eating things from his garden.
1980s flashback...remember when casinos would give out those plastic buckets for coins before they started handing out vouchers? My in laws must have had 3 dozen of them laying about their yard, they'd plant herbs, single vegetable plants, anything they could in there.
That's how my peach trees came to be. Biagio ate a peach one day, took the pit and planted it in a casino bucket and watched it grow. Then he planted another, same way. The first time we brought him to our house, he brought them with him and he said..."You put this in the yard and someday you get peach! "
Biagio, you would have eaten them all in one sitting, the way your son does...who by the way is semi-allergic to the skin...he peels them and he eats them (and boy are they delicious!) 4-5 at a time...and like me, I know he thinks of his dad every bite he takes...the way I think of Biagio everytime I look out into my backyard at these 2 trees, but especially this time of year, and especially in the last few years where the peaches have been edible.
It's sort of like a circle of life thing...Biagio planted the trees, we eat the peaches and keep his memory alive.

Brushes With Fame....Simon's Story

2008-08-07T09:16:00.004-04:00

Please read the story(click on the title of this post)...written by another NJ mom with 2 adult FX sons...who is truly an inspriation to me...she's a super talented writer too!

Catching Up!

2008-07-30T18:28:00.004-04:00

Wow! I hate when more than a week goes by and I don't blog :-(
So I've returned from the 11th International Fragile X Conference in St. Louis...which was hellish to get to, after a 9 hour wait in the airport, but after a short nap in the hotel from 4-7 am, Lisa and I were ready to go on Thursday morning!
The conference was full of great information, but I have to learn that I must arrive the day before it begins and leave after it ends....I definitely had NO time to hang with some people I wanted to hang with! I did meet fellow Fragile X Moms and Super Bloggers Erika and Kristie in person, which was a treat, albeit a brief one! Next time ladies, we'll lunch....maybe Detroit in 2010? How about end of July? MBL....shout out to you BELLA! When it's in your town, you'll show me around!
The conference itself is bittersweet. One part of me feels so empowered and motivated to raise awareness and care for my children. The other part is that brutal reality of it all, and their futures when I'm gone. Balance is the key I think....a fine tuning if you will of the pros and cons of raising children with any kind of special needs.
I will blog separately about this, but a film was shown called "Including Samuel" which was mind blowing in the sense that there are schools that "include" children in schools is every true sense of the word, which is rare. The documentary film was made by a father (Dan Habib) of a disabled child. Very powerful! This film should be a MUST for every Teacher, Principal, etc...where special children are included with typically developing peers.
More later....pictures too! I promise!
PS - My mom is doing much better, thanks to all who contacted me...she much less dizzy and re-gaining her strength back!

Vertigo

2008-07-22T08:27:00.002-04:00

vertigo
Main Entry:
ver·ti·go
Pronunciation: \ˈvər-ti-ˌgō\
Function: noun
Inflected Form(s): plural ver·ti·goes or ver·ti·gos
Etymology: Middle English, from Latin vertigin-, vertigo, from vertere to turn
Date: 15th century
1 a: a sensation of motion in which the individual or the individual's surroundings seem to whirl dizzily b: a dizzy confused state of mind2: disordered vertiginous movement as a symptom of disease in lower animals; also : a disease (as gid) causing this

Hmmm...Why you might ask? Why blog about the definition of vertigo?

My mom was diagnosed with having vertigo yesterday. Not only can I not do anything for her, since it has to run it's course. I can't go and see her in PA either.
I have my niece here from VT who is 11 like Matty plus both of my kids, and I have to take her back to Brooklyn tonight to return her to my SIL who lives in Long Island where she'll stay through my nephew's 1st Birthday party on Saturday.

Tomorrow night I'm supposed to leave for a Fragile X conference in St. Louis...but my mom was coming to stay here with my kids to help A out since his boss and the guy who reports to A are out this week, taking a day off is not an option.

So my mom coming...that's not happening....so I am in a furious dash to arrange for sitters, drivers, before camp care, etc....to make up for the one person that is my mom...I'm tired already and it's 9am.

Oh, and today, July 22nd is National Fragile X Awareness Day....check your in boxes!

Friends.....

2008-07-15T13:33:00.003-04:00

22 Years later, 4 friends met in Atlantic City, NJ for a girls spa weekend celebrating turning 40! I dare say, we all are much more fabulous than we were when we met as college freshmen at Dickinson College in 1986.
You only see 4 of us, Lizzy, Diane, Me (Paula) and Ginny.
When this whole potential girls weekend concept was born in early 2008 (thank-YOU Fancy Nancy), we were a group of 8. Then, when dates were tossed around and eventually finalized, we lost two to family vacations that overlapped or came too close to the date, we lost one to a wedding, and we lost one in the 11th hour to an unfortunate death in the family. The 4 remaining all contemplated cancelling too...and boy... am I glad we didn't!
It was a little surreal for me, I hadn't seen Liz and Diane in person since another friend's wedding in 2001. I do see Ginny at least once a year.....we try to at least. And it's different....it's not like we're so intertwined anymore, our lives are very different....we live in different areas of the country...our kids are different ages, we lead very different lives.
But we have a connection...there is something there that connects all of us to each other...it's remembering the dozens of memorable experiences we shared. Maybe it's because we were friends at an impressionable time in our lives, a fun time you never forget, the last hurrah before we all got real jobs, got married and had our families. Who knows?
What's funny is that it took all 4 of us to piece some memories together....all of us admittedly have lost brain cells over the last 22 years. Diane claims her brain is a sieve....and I'm pretty sure that mine is too. We all remember different things, but as a group, we put it all together.
A wonderful time was had, photos of our children were shared...updates on our husbands, our jobs ( ha, or my lack of one), our health, our parents, our recent vacations, etc....was how we spent our time conversing.
We stayed at The Borgata, met for a late dinner Friday night in Wolfgang Puck's restaurant, went for a drink after dinner at Bobby Flay's place...all in The Borgata. Saturday morning, we didn't open our eyes and get out of bed until 9am....honestly, I can't remember the last time I slept that late. We drove to the Boardwalk, went through the Tropicana and their new wing, The Quarter, we walked up and down, in the water on the beach...went back to the Borgata in early afternoon, sat outside for an hour and then went to Spa Toccare...um, WOW! We each did our individual spa thing, but then we reconvened in the whirlpool, steam room and sauna area...what an unbelievably relaxing afternoon (minus my lost jewelry drama which had a happy ending...thank-YOU VIRGINIA!).
We then got dressed and took a cab to the Pier at Caesars and ate at Buddakan, an Asian fusion restaurant that was AMAZING! We then went back to the Borgata and gambled a little....I was lucky enough to hit a royal flush at a 3 card poker table and made back the $$ it cost me to be there and then some (which I put towards a birthday handbag....shocking ladies, no?).
We had breakfast and went our ways on Sunday...back to our lives...I came home and Anthony and I took the boys swimming at Anthony's cousin's house down the block...we had a great day too!

To Lizzy, Di, Gin...thanks for the WONDERFUL weekend and the memories! You ladies are truly FABULOUS at ANY AGE!
Thanks for sharing all of your photos and stories about your families! See you at the next one!
To Fancy - Without you, NONE of it would have been possible...thank-YOU and we MISSED YOU!
To Susie, Mojo and Meg...I sincerely hope that you can all be there when we plan the next one...we had a toast to all of you ;-)
To all 8 of us....Happy 40th Birthday!!!!! (5/24, 6/14, 7/2, 7/15, 7/17, 7/20, 8/4 and 10/4)!!!!!!!!!!!!!!!!!!!!!!!!!!

First day of not being employed

2008-07-10T13:01:00.003-04:00

It's so strange...this morning, I had no laptop to sign in to, no Sametime to IM my work friends on...no policies to analyze. It's a yucky yet freeing feeling.

I know this much about myself...I'm good for nothing when I have time on my hands. I don't really procrastinate, but I find myself with inopportunity.

For instance...this morning...woke up @ 6 because the dog we're sitting is up at like 5 and makes a TON of noise! I walk her, play with her, make coffee, make lunch for Matty and pack both kids knapsacks for camp.

I get both kids up, dress them, shower, get them to camp...and the granite people are here. That takes about 2 hours....counter tops only. No drilling holes for the sink, it hasn't arrived yet :-(

At this point it's 11:30...have some errands to run, but I don't have enough time b/c my cleaning lady arrives @12:30 and I like to be here to greet her, update her on what's she's going to be doing since she can't do anything in the kitchen.

She arrives @ 12:35...OK, now I can go out...uh no, the phone rings, the guy from the granite people (not the installers who were here in the morning, but the template guy) needs to come and take his measurements for the back splash, since it couldn't be templated until the counter tops got installed. He's about an hour away, be here by 1:45. Today? Um, yes ma'am, if you want the back splash installed next week. OK

I really have nothing mandatory to do, I'm used to not leaving the house on the days I worked from home, with the exception of seeing my trainer. Plastic Surgeon hasn't cleared me to work out for another 2 weeks, so I can't do that. So, while I'd like to have a manicure and pedicure, it's not in the cards today.

When Matty gets home from camp, he needs to change quickly, we need to pick up Ben and then drive to Newark and pick up Anthony at the PATH station where he commutes to the city from and we're driving to Montclair, NJ to see a NJ Jackals game. That's minor league baseball. It's a Fundraiser for Fragile X Syndrome run by another mom in NJ with a child with Fragile X.

Coincidentally, a friend, who was my roommate junior year @ Dickinson College (which we spent living in Bologna, Italy) lives in Montclair with her husband and 2 boys, so they are joining us.

We re-connected in 2006 after losing touch sometime after graduation from college in 1990 and before I got married in 1994...it's a bit foggy to me why and how we lost touch. In late 2006, I sent a story to Dickinson Magazine about Fragile X and how my 2 kids were affected and she e-mailed me and we've been in touch. We spent a day at the beach last summer, and now we're going up to where they live. I'm really excited to see her, she's so great! He husband is very sweet too as are her boys.

So, tomorrow I have to try to run some errands in anticipation of my 40th Birthday celebration # 2 (#1 in LA back in May) weekend in Atlantic City (at the Borgata) with girlfriends of mine from Dickinson that I lived with the 3 years I lived on campus. We started out as a group of 8, with adjoining rooms for 2 nights. We're down to 4, so we're in one room. It's ridiculously expensive to sleep at the Borgata, but they have a great spa we're going to Saturday, and we're having dinner etc...so it should be fun, even though life happened to 50% of us, and we're only 4 now...it's still going to be very fun!

So, I might not have a job, but there is still a LOT of kitchen things happening....and the kids are really busy, and let's not forget the dog sitting ;-)

How did I manage to work full-time for the last 2 years???

2008-07-02T17:13:00.002-04:00

Let's re-cap my day so far....it' 5:15PM here....Wednesday afternoon

6am - get up thanks to A's alarm ringing since 5:30am....he's still sleeping of course, I'm the only one who hears it. Don't have to be awake since I have no job to go to. Technically, I can sleep in til about 7:30 til I have to get the boys up for camp. Normally, when going to work, I'd be out the door on my way before 6am.

6:15 - Make some coffee...read some e-mail, cruise some sites....

7 - go back upstairs to make my bed, put away laundry....see that B is awake...take him potty, chat with him for about 20 minutes with repetitive questions like "Is Matty awake?" Is Daddy working?" Questions he knows the answer to, but has to ask...OVER and OVER.

7:45...get Matty up, wash and dress them both for camp...make M's lunch for him (B gets b-fast and lunch at his camp). Make sure kids have their sunscreen, hats and sun glasses in their knapsacks.

8:10 drop Matty off at the camp bus...which comes late at 8:25 instead of 8:15...no big deal.
8:35 drop Ben off
8:50 - arrive @ CVS to refill the kids vitamin rx and see if the Pharmacist will give me 1 Vyvanse for Matty in the event that the script which I called his neuro for on Monday doesn't come in today's mail, b/c I gave him his last one today. Nope, can't do it he says...it's a type 2 class drug, you need a new script EVERY 30 days, they can't be written with a refill. I know this....but I'm anticipating the script (like yesterday) and am afraid he'll miss a dose if the rx doesn't come in the mail today. Sorry he says....no can do. Oh, and by the way, the .5 mg and 1mg vitamins yours kids take, prescribed by their pediatrician...on back-order for at least 90 days. Suggest you try OTC ones WITHOUT iron and I'll (Pharmacist) call the Ped for a Fluoride rx for the boys...great I think, another pill to chew in addition to the vitamin.
9:15 - home with a fresh hot cup of Dunkin Donuts coffee...LARGE, 2 splenda and skim milk....ahhh!!!!!!!!!! Make phone calls, take care of about 12-15 things I have been meaning to do for the last 30 days.
11 - have to get in the shower....have to leave @12:15 to see my plastic surgeon who is taking the staples out of my head today.
11:05...while in shower.....OH NO!!!!!! Boys don't have towels with them and they BOTH have water activities this afternoon.....
11:50 back in the car....drop off a towel for B and drive ACROSS town to M's camp site....talk to the assistant director...which was good, I wanted to know how he was doing @ camp....he's the only kid with special needs in his group. She says he's doing great, having his lunch and I can go into the caf and give him his towel. He's sitting with other kids...but he's sucking his wrist...a self-stim thing that I HATE...it just draws attention and I constantly stop him when I see him do it...he NEVER does it @ home b/c I constantly tell him to stop. OY! He has time to self-stim? What else is going on here?
12:00 back in the car...I decide I have time to go to Freehold Glass (totally out of my way) and order the shelves I need (have the wood template in my truck) for 2 corner cabinets that have glass doors.
12:25 - order 6 glass shelves (leave them the template) and on my way to see the Dr.
1:05 - arrive @ plastic surgeon's office...to find the waiting room FULL of people....OY! He's WAY too popular, my doctor....love him, but he's MY doctor! ;-) I hate to share.
1:45 - FINALLY get in to see him..and only HALF the staples are coming out :-( WHAT??????? Nope, he goes, you are a SLOW healer...like I didn't already know that..come back Monday (OY....again???) and I'll take the rest out....great...4 more days of not being able to wear glasses or sunglasses and staples STILL in my hairline! EXCELLENT! "OH, and that fat we injected into your now black and blue chin???? I don't like the way it looks" says the Dr. "Good, me neither!" I say. We'll think of something to inject in there to make your chin look normal he says...great...non-surgical this time, he promises.

2:30 arrive back in town...at the funeral home for a wake....one of my neighbors lost her mom yesterday, so I stopped there this afternoon to pay my respects.
2:55 leave funeral home...fly home
3:02 arrive home....cabinet guy (from the manufacturer of my new cabinets) is waiting in the driveway...right on time for a 3pm appt. The cabinet installers had called the manufacturer to fix some blemishes and answer some of my questions... that's what I like...efficiency. Show the guy some of my concerns...most he touched up on the spot, some are part of the wood and nothing to be done, and the 2 cabinets I ordered the glass shelves for earlier today, well, they need these insert panels, 1/4" think that will of course alter the measurements of the 6 shelves I ordered today....cabinet guy asks me to call glass guy and wants to talk to him himself....they work it out with the new dimensions...excellent.
3:25....say bye to the cabinet guy...pick up mail....oooooh, M's rx came.....right in the car....drop off at CVS window....need it in an HOUR, no way I'm going out in the car again once I get Ben from camp, with the driving I did today? At the current price of gas???
3:35 pick up M at his bus stop....bring him home....take washer clothes, put them into the dryer, fold the load I dried this AM.
4:25...go pick up Ben at camp
4:45...pick up rxs at CVS....pharmacist has worked out the fluoride tablet thing with my PED
5:00 - home.....kids playing the Wii...folding laundry....what's for dinner...quite challenging with no sink yet.
5:15 - time to blog.....I'll feel better
:-)

ARE YOU DIZZY YET?

Kitchen....the first photos

2008-07-01T16:53:00.000-04:00

Before.....the one wall with refrigerator and stove...

After...same wall, opposite angle, refirgerator now in the middle and double wall oven at the end were Fridge used to be....cooktop elsewhere...

I lost my job...;-)

2008-06-29T21:33:00.002-04:00

I'm not sure if I'm still stunned or it's the painkillers that I'm taking post surgery that make it seem not real.

I get a phone call Thursday ( I took the day off to have some surgery to tweak the original nerve regeneration surgery I had 13 months ago) to tell me that my group, Policy Management is being disbanded (50 colleagues in my office and another 100 in Chicago affected) and that after July 11th, I no longer need to report for work. Excuse me? I've been.....fired? From Marsh....I've been let go? The abysmal economy has finally caught up with me? Me, the one who started a renovation project in her kitchen 4 days ago?

So, I'm home and I'm cranky b/c I can't eat anything and it's 12pm (18 hours since I've eaten) and my doctor is backed-up, so his office hasn't called me to go in for surgery yet. My site leader called me, and he's not only flabbergasted by the announcement that Policy Management is closing down, he's genuinely sad (as was I) because we're both what we called "Marshers"....meaning we both built our professional careers in and around Marsh & McLennan, "the world's number one insurance brokerage firm."
Wow...It's hard to even type this. Everything else I wanted to blog about over the past couple of weeks...the kids graduation, our wedding anniversary, our kitchen project, my surgery...it's all moot.
I'm out of this job...this job that I had for 2 years, that enticed me to come out of mommy-hood, semi-retirement and return to full time work. This job...where I made some really nice friends over the past 2 years, where I re-connected with colleagues I left behind when I had Matty back in 1997. Ouch! This REALLY REALLY sucks!
Yes, I have until July 11...yes, I'll collect severance for several weeks after that, thanks to being an officer or the company, yes, I could even collect unemployment after that. Yes, I no longer have to worry about how to use my precious vacation days with the kids...I'll be off most of the summer with them.
But...it still really SUCKS!
I probably could go back to Marsh in another capacity...not the point. My job let me work from home 3 days a week, and only commute 2...THAT was the beauty of it. The flexibility was amazing...and that's what I know I won't find in the old school world of Marsh in their Insurance practices. Sure, I could get hired as a broker, but I can't go to NYC 5 days a week for 12 hour days.
I have NO IDEA what's going to happen now....I promised Anthony not to stress and to enjoy the free time with the boys over the summer.
Look out....after July 11th I will have PLENTY of time to blog....we'll catch up on the kitchen renovation, my surgery (gross pictures of the dozen or so staples in my head and all;-)), the kids and camp, the kids and their fall programs....etc.

Ben and Matty's Graduation Ceremonies

2008-06-19T12:10:00.000-04:00

I thought about making this a "wordless" post and just put their pics up here...since I'm still too emotional to write about it. It is both amazing and devastating. It's joyous and yet so tragic. It's normal and yet so abnormal at the same time.
But I'm their mommy...and I'm so proud of each of them. They never cease to amaze me. Each such a special individual, with special qualities and traits. Congratulations Benjamin and Matthew, your mommy and daddy love you very much!

First Born Meme

2008-06-15T22:10:00.003-04:00

I was tagged with this so long ago...and am finally getting around to it! Sorry Beth it took so long!

1. WAS YOUR FIRST PREGNANCY PLANNED? Yes it was!
2. WERE YOU MARRIED AT THE TIME? Yes
3. WHAT WERE YOUR REACTIONS? Nervous
4. WAS ABORTION AN OPTION FOR YOU? Not Necessary
5. HOW OLD WERE YOU? 28
6. HOW DID YOU FIND OUT YOU WERE PREGNANT? I was a few days late...thought I might be...took a test...Viola!
7. WHO DID YOU TELL FIRST? Anthony...the dad ( my husband)
8. DID YOU WANT TO FIND OUT THE SEX? Yes
9. DUE DATE? April 24, 1997
10. DID YOU HAVE MORNING SICKNESS? Occasionally
11. WHAT DID YOU CRAVE? pizza
12. WHO/WHAT IRRITATED YOU THE MOST? I was too busy working...
13. WHAT WAS YOUR FIRST CHILD’S SEX? boy
14. DID YOU WISH YOU HAD THE OPPOSITE SEX OF WHAT YOU WERE GETTING? Sure...I am a girly girl...I didn't know WHAT to do with a boy!
15. HOW MANY POUNDS DID YOU GAIN THROUGHOUT YOUR PREGNANCY? 65 lbs!
16. DID YOU HAVE A BABY SHOWER? No way...I was way too superstitious
17. WAS IT A SURPRISE OR DID YOU KNOW? N/A
18. DID YOU HAVE ANY COMPLICATIONS DURING YOUR PREGNANCY? Not really...I just ate my way through it
19. WHERE DID YOU GIVE BIRTH? In a hospital room...in a maternity ward
20. HOW MANY HOURS WERE YOU IN LABOR? 21...water broker @ 11 pm on a Friday night..Matty arrived @ 8pm the following (Saturday) night.
21. WHO DROVE YOU TO THE HOSPITAL? Anthony
22. WHO WATCHED YOU GIVE BIRTH? Anthony...doctor and nurses
23. WAS IT NATURAL OR C-SECTION? Natural...with drugs
24. DID YOU TAKE MEDICINE TO EASE THE PAIN? Yes...but it still HURT A LOT!
25. HOW MUCH DID YOUR CHILD WEIGH? 9 lbs. 1/2 oz...oh yeah, THAT'S WHY IT HURT!
26. WHEN WAS YOUR CHILD ACTUALLY BORN? April 19, 1997...5 days ahead of schedule
27. WHAT DID YOU NAME HIM/HER? Matthew Blaise (Blaise (English translation of Biagio)....after Anthony's Dad, Biagio, who passed very suddenly on January 5, 1997, less than 4 months before Matty was born)...sad for me even to this day, 11 years later....he was overjoyed that we were having a baby, he and Anthony's mom gifted us the nursery Matty had, and he never got to meet him...they would have been best friends, Matty and his Nonno...Nonno would have gotten "it"

I'm calmer now....

2008-06-12T14:37:00.004-04:00

Well...add Advocate to my list of job titles. Today, we (Anthony and I) acted on behalf of our son to advocate for his Kindergarten educational placement. It's pretty amazing that being a parent isn't enough anymore. You have to be knowledgeable about your child's rights in special education, you have to be able to effectively (and non-aggressively) paint a picture of what your child can do, and you have to refute all these evaluations that paint your child as a helpless and hopeless case that will never achieve any sort of goals. It took a long time, and we met resistance, but with the backing of Ben's morning teacher, his SLP and me and Anthony, we did it! He's getting what we wanted....more on that specifically in a different post....let's just say, Ben's going to Kindergarten in style!
PHEW
I was amazed that I was able to keep my composure.
Truly, I was apoplectic from the night before, when to my surprise, as I was going through Ben's backpack (as I do daily) I see a flyer indicating that there was a graduation ceremony for the program he's been attending in the afternoon since early February (part-time). He been attending this program for its full 2.5 hour duration since Mid-May. The first notification I receive for this graduation ceremony (scheduled for today @ 1:30pm) was yesterday.
Do you really want me to BELIEVE that you just thought about graduation the day before you've scheduled a ceremony? Do you see that cute boy's face up there? He's an afterthought?
Funny, Ben's morning program teacher has had their graduation scheduled for over a month now, giving us both the chance to take the day off so we could both be there for Ben.
The afternoon program teacher has just decided the day before that these children's graduation from pre-school should be formalized? Stressed out / angry / beyond reason isn't really an accurate picture of how I felt yesterday when I realized that there was a graduation ceremony going on that I had no idea about and couldn't possibly attend. I had to take time off this morning to attend his IEP meeting, and have to take tomorrow off to go to his graduation. Our time has to be scheduled so far in advance with both of us working. I had a mandatory meeting to attend this afternoon @ 1:30 that I could not cancel.
I carried this graduation notice to my IEP meeting, thinking that the afternoon program teacher would be there and I would ask her about it and why I was receiving it the night before. Of course, she wasn't there at Ben's meeting, just his morning program teacher, who has become a gem in our lives, was there.
She saw the angst in my face...and KNEW why I was carrying that flyer. She told me that she saw the flyer (the assistant from her class that goes with Ben to this class was so shocked that she brought it back to her to show her) and had raised the situation to the principal, KNOWING that I would be furious about being notified the night before. She also told me that she had words with the afternoon teacher, and informed her how wrong it was that she informed Ben's family the night before (all the other children's families had plenty of notice it turns out...it's just that Ben is such an afterthought to this woman that she never thought to call me, e-mail me, drop me a note once Ben began attending her class in February). Yes, of course I sent her everything she needed to know about Ben back then, with no response. She never answered any of my notes. Shame on me for not complaining about her sooner. I did make up for lost time. Trust me. Everyone will know that my son was excluded from this.

Sooooo...tomorrow will be Ben's true and only graduation ceremony, with his very special teacher from his morning program and his friends he's been with since they all were 3. I will bring a box of tissues, it will be a tear jerker I am sure, to see a slide show of these boys who couldn't talk or climb the playground 2 years ago, to a chatty bunch of almost kindergartners. To see these boys sing and get diplomas is something that makes all the hard work and aggravation worth it.

Pictures to follow...anyone up for a glass of wine?

You know it's hot when....

2008-06-10T06:18:00.002-04:00

They reduce the school day to a half day...for 2 days in one week!
Yep, yesterday and today....only 4 hours in school. It's too hot to be in school?
Whatever......
I NEVER had a heat day, and I can vividly remember days as hot as these (95-100).
In fact, when Anthony and I bought this house in 1995 and moved in July 1 of that year, we didn't have the central air we do now. We had the duct work, but we opted not to purchase the sub-par unit the builder was offering. Also, we sunk EVERY cent we had into the purchase of this house so, there was nothing left at the time, and central AC is expensive. We said to ourselves...we'll do without ....we'll save and we'll put a good one in the next year....WOW...it was easily the hottest summer I can remember. The day we got married (6/18/94) it was EASILY 100 degrees. It does get hot here sometimes on the east coast!
That said...I LOVE summer...I love hot weather...maybe b/c I am a summer baby, born in the middle of July, always had my birthday parties outside at my parents pool...I don't know....when I was a kid, you went outside and swam to get cool, you did not stay in air conditioned houses.
So...I cut my office day short yesterday and came home to get them off the bus....the beauty of my job, I can do things like that. Today I work from home, so I'll be here to get them. They have been swimming pretty much non-stop since Saturday morning, today will be no exception.
Last night we had a lovely visit from a grad student from KU (Univ. of Kansas) who we know for years, (Ben participated in a study she was a part of that ran over a 4 year period) who came to sit with and test Matty (for sentence/language development) for a couple hours for a research study she's running. She stayed for dinner, and we all had a great time together.
Tomorrow should be back to our normally scheduled programming. A full day of school...a full day in the office....?

Something is.....

2008-06-06T17:14:00.003-04:00

Wrong is a strong word....it's not that something is wrong in my world, it's perpetually wrong...my children, while a tremendous source of joy, are a constant reminder of the injustice in the little corner that is my world.
The past couple days...something is...amiss? Left of center? I can't really label it.
Things are good overall...Matty's IEP meeting yesterday went well. It's was really a non-meeting, more just a thanks for the memories type of meeting with his team at his current elementary school. His plan/goals for next year will be reviewed 30 days after he starts at his new private school in the fall. I'm over the shock that he's leaving the school district. We saw a bunch of Matty-types walking around there. He's going to fit in, God willing and finally he won't be the kid sticking out.
Ben's meeting is not until the 12th, and since he's aging out of his pre-school handicapped program and moving to Kindergarten the district completes evaluations in all disciplines.
That's it....that's the problem.
As I sit here typing about my blue days, I'm realizing that it's because I keep getting reports in the mail about how LOW functioning Benjamin is in the disciplines he's been evaluated in so far. When you see your son who in age terms is 5.3 (age.months) and read that in some report areas he functions (by their guesstimate) at a 2.6 level....um, that's half his age. OUCH! It's not meant to be hurtful, but the sting is, well, unbearable...enough to bring tears to your eye by just seeing that harsh reality in print. You'd think I'd be used to it, I've had one kid or another perpetually evaluated for the last 10 years!
It reminds me of when I started working for Marsh back in the early 90s, and Microsoft Word was all the rage. I remember using their spelling and grammar checker and being surprised when it scanned my oh-so-professional letter to some risk manager of a Fortune 50 company and it told me that it was written at a readability level of an 11th grader....it's like...you're a computer, what do YOU know?
I got one report that claims that out of 26 letters in the alphabet, Ben can correctly identify 8 of them, or 30%. Not only does he know all of the capital letters, he's got about 3/4 of the lower case down too.
You know, I'm just a mom, not an educator, and I completely am humbled by people who teach my Fragile X children and all children with special need. But, there has to be a way to better gauge what a child who lacks expressive and receptive communication skills knows. These assessments aren't a good snapshot of what kids know, yet they are used in consideration of their educational futures. Call me crazy, but that's not accurate.
So, Ben functions at a level half his age, according to some report. Hmm...I guess had I given birth to a typical child, they do what he's doing now at age 5 when they are 2 and a half.
Wow...why can I not see the blessing in that??
I need to adjust my attitude, of this much I'm sure...I still have so many things, meetings, planning, ceremonies, decisions in the next two weeks that the thought makes me shudder.
OY!

2008-06-03T06:49:00.000-04:00

So, a lot of things have happened since my last entry.
Last Thursday, Anthony got a call at work that Matty had been accepted into our town Rec Camp, that a space opened up after someone withdrew, and they offered it to the 2 kids in front of him on the waiting list who turned it down. Matty’s number came up! I had to go down and register him in person. I filled out all the paper work yesterday at work so that I could make photocopies, etc. He can take a bus from within our development with the other kids going to camp. They take them to the rec center, and then they get on another bus to go to their locations depending on grade. The 5th grade camp is trip oriented, so 3 days a week, they go somewhere. I was relieved to hear that, because not only was Camp Robin (what he’s used to) that way, but to just sit in the schools and swim at the town pool in the afternoon would bore Matty. Am I nervous about letting Matty take the bus alone with the big kids? Um, bad mom that I am, I let him take the bus like this when he attended the Rec Camp after K and 1st Grade. I pulled him out for Camp Robin b/c at the time our Rec Camp wasn’t able to accommodate kids with special needs, and it became apparent that Matty needed someone to encourage him to participate. Now, he’ll has his own counselor to encourage him and keep him focused.
So, that problem has been solved! So, we thought. A got a call on his way home last night from our original camp’s director (the one who called and told us that they were max-ed out and could no way take Matty) who asked A if he could come there to register Matt ?!?!?! We asked Matt which camp he wanted to go to, and he clearly wants to ride the big bus with the kids in the neighborhood and go to the Rec Camp.
When it rains it pours, right? We had no camp, and now we have 2 camps! It’s a much better decision to have to make.
I populated our June Calendar on Sunday evening after I thought I had put the boys to bed. Thanks Matty! Matty got out of bed about 20 minutes later and goes "Mommy, you forgot to change the calendar." The boy can’t do complex math, but his internal clock tells him that the calendar in the kitchen needs to be changed? I was surprised to find that there were no white spaces when I was done….it was June 1st and we easily have ¾ of the days accounted for. Between school meetings, school ceremonies, doctors
appointments, parties, kitchen re-model, start of camp for the kids, my surgery, etc…it’s all spoken for. I think I’m free on the 17th…anyone want to go out for coffee?
I’m having minor (in and out) surgery late this month. The plastic surgeon who did my cross nerve regeneration surgery is concerned that though the nerves seem to be live, a year later, the left side of my face is still not 100% and it probably won’t be without some help, since 10 years of atrophy have done their damage. He’s doing a re-suspension (lift/tuck) of the left side of my mouth and chin. I already have face lift incisions from the nerve surgery, so he’ll use that opening. Shouldn’t take more than an hour, and my mom will drive me and bring me home. I will be able to work from home for a few days, and should be fine.
The madness never stops…..ha!

Back to reality

2008-05-27T06:31:00.004-04:00

My trip to the West Coast was AMAZING....we covered a LOT of ground over 4 days! We truly partied like rock stars, though we could have used a chauffeur in the LA traffic, that would have made it a little better!
Home safe and sound since Friday evening, and had a tremendous family filled weekend with my family...very lucky! My kids thought THEY were rock stars going to bed after 10 each night because we were out at other people houses!
So, not to diminish the WONDERFUL time I had with my GFs, but of course you know there were disasters at home that A had to put out and spared me of the details while I was gone.
After I put the boys to bed on Friday night, A and I were going to just hang out (read: me keep him company while he strips a wall of wall paper out of the kitchen) - (BTW, he's really on target with all that has to be done, not like his "loosey goosey think she's a rock star groupie wife").

So, I figure I'll do some Internet surfing while talking to him and while he's wall-paper stripping. I get his laptop from the living room, I surf the same sites, so I know they are all saved in his address bar, so I pull it down, and I see the addresses of a bunch of summer camps for kids with special needs. And I'm confused. Summer camp has been a slam dunk in this house for at least the past few summers....both kids set with their programs, we have them transported privately, it's a well run machine.
So, I question my dear dear husband as to why there are camps in his pull down address bar? And he goes pale. He does NOT want to have that discussion with me. He doesn't want to bring me down. Again, how did this sensitive man marry me? How does my happiness remain in the fore front of his mind?
Long story short...right after I left, A gets a call from the man who runs Matty's camp. Matty attends (last 5 summers) as an out of town camper, since technically, it's in the next town over. And all along, they say that out of towners can attend, but residents get priority...naturally. They have a cap of 100 campers. They hadn't had in person registration yet (that's today, the 27th) but have already reached their quota with residents, so as a courtesy, they called the families of out of town campers who attended in the past to apologize and say, sorry, we can't take your kid.
I had the wind knocked out of me as A was telling me this story...good thing he didn't tell me on vacation, I would have gone back to LAX and come straight home.
Since then, A called the same camps (sort of funny and ironic because I went down this road "alone" about 5 years ago with a newly born Ben, looking for the right program to put Matty in) that I did. He called everyone he knew that might know something about special needs summer camp, set up appointments, put Matty on a waiting list, etc....he was pro-active WITHOUT involving me.
WOW! I can't even think about what his week was like while I was vacationing, he's sweating about summer camp for our older son. :-(
So now, we have to scramble to find the right program in the next few weeks. I will pick up the ball at this point, but he really made the first phone calls and everything. We're set with school for the fall (for Matty), and opted to go with the school and the program our district originally suggested, and they offered M admission after meeting him. Ben's IEP has been scheduled for the 12th of June....nothing like waiting til the last minute, right?
Back soon with an update....once it's all figured out, we'll get back to our regularly scheduled programming of my pictures from California!

Look out LA....

2008-05-19T08:55:00.002-04:00

Here I come!

So, my husband, you remember him, THIS MAN????
My 40th Birthday is coming up later this year. In order to celebrate this, my husband is sending me to Los Angeles for the week, alone. Yep, you heard that right. No husband, no kids, no laundry, no cooking, no making breakfast, lunch or dinner. Just 2 friends and me, trolling through LA....Rodeo Drive, Santa Monica, Brentwood, Hollywood....OY...a material girl's dream come true.
Actually, we're doing a bit more than that....but I'll save all the fun things we're going to do for after and I'll share pictures. One thing I will share is that we're taking a tour of the set of General Hospital with 2 stars of the show, Jason Thompson and Kimberly McCullough.
I'm flying out this afternoon, returning Friday evening, just in time to spend the long holiday weekend with my family. Be in touch soon!

Outside Project # 1, 2008

2008-05-10T15:52:00.003-04:00

Before......When it was Spring here, in Mid-April

After....now that Winter has returned in May

Ahhhh....to FINALLY scratch something off the To Do List!

Almost 1 Year here at Paula's Place

2008-05-08T06:33:00.003-04:00

I recently passed the 1 year anniversary of my facial nerve reconstructive surgery, so, my 1 year anniversary of this blog is upon us too....over the weekend...I remember it was Mother's Day when I started it. I was home alone recovering while Anthony and the boys had a Christening to go to. I had been thinking about doing it, and with a little help from my friend ASP who gave me a bunch of pointers about blogging....Viola!

So, things here are really good, and without complaint.

M is suffering horribly from allergies, but I know it's temporary, so we just have to deal with it. M has standardized testing in school this week, which is a blog in and of itself...how do you put a child with limited IQ through a standardized state exam, and claim that you're making modifications for him, by reading him the test? The subject matter is still so beyond him....whatever, that's a battle I fought too many times.

B is evolving so much each moment, that it never ceases to cause me wonder about how far he'll go. He is so chatty, wants to do so much....and then abut 7:45pm everything comes to a crashing halt and he says " Want go to bed" - HA! Amen, my little one...Mommy put you to bed. :-)

A has totally picked up the slack with this kitchen re-model. We went to contract last weekend, so the wheels are in motion, and the hard choices have been made. But since then, he's making the phone calls, working with the contractor, the cabinet people, the appliance guy...bless him....I just can't right now...I have a project for work that is overwhelming at the moment, which will end around the 16th, but much of the kitchen leg work needs to get done this week so that we can insure demolition and installation during the week in June A plans to take off with the boys...that week between school ending and camp beginning.

So, like I said, things here are good....I miss my friends though....both my live in person ones, the ones I talk to on the phone, and the ones I "see" online....I have just not been able to keep up, so I'm sorry. It will get better soon...ha, who am I kidding? I need to better organize my time.

I always make time for the ridiculous, that much you know about me...so I have a friend, we'll call her Ma. We met about 8 years ago, our "Matthews" were in pre-school together...and she and I have been friends since, she's one of the very few good friends I've made because of my son. Ma has 4 kids, and she pretty much lives in her car...her kids are super busy. She moved a couple years ago, about 30 minutes away, so I don't see her often, but we talk a lot. She's had an overwhelming time the past couple years too, so I worry about her.

Not only do we have the kids with issues in common, but we have the General Hospital thing too...she's a lifer, not like me, I took about 20 years off from 1985 to 2005...but am full fledged again, thanks to Tivo.

So... I tell her that her favorite GH player Steve Burton (Jason) is making a a personal appearance not far from here, she calls, we get tickets and we go on a Sunday morning, when I should have been home worrying about my son's Birthday Party and Baseball, but that guy I married said.."GO, you NEVER see Ma, it will be good for you both" Enough said...we go, what a great time we had with each other, just catching up in person....Steve Burton was...Eh...a bit full of himself, though Natalia Livingston (Emily) and Bradford Anderson (Spinelli) were lovely....I can say that safely, Ma doesn't go online.....here's a photo from that day...I cut Ma out to protect her privacy...she has a copy though, and she's standing on the other side of Steve Burton...the BEST sandwich he EVER had!

It's Handy Manny

2008-04-29T14:52:00.000-04:00

Not because he's my son...but because he's so funny..."Look at me...I'm Handy Manny"...and THAT deserved a picture!

Too much......

2008-04-29T06:45:00.002-04:00

We are slowly recuperating from what seems to have been a month long party. We 4 are all beyond tired.
Ben's 5th Birthday was on 3/28 and he had an action packed party weekend. Matty's 11th Birthday was on 4/19 and his week long celebration culminated in a family part here on Sunday with about 30+ family and friends at home. In between, we had other parties to go to, days off from school it seems to me that from 3/28 to 4/28 was one big blur....a never ending party.
My SIL and her 3 kids ( twins 5 days younger than Matty and a son a few weeks older than Ben) were in NY last week from VT for her kids spring break....it was so great to see them and my kids had a ball playing together with the 3 of them, and my other SIL's 3 kids too....my MIL had all 8 of her grandchildren at her house in Brooklyn Friday night...what beautiful chaos that was...I cherish moments like that. True family fun at it's core.
That said....seriously.....I'm done...I know as we get older we become less tolerant. I just don't think I could have another party in my home in the near future.
And watch what you wish for....because it just might come true.
So, how can you insure that you won't have to entertain and host people in your home for an extended period of time? You gut and re-model your kitchen. Yep, that's the plan. Seems extreme, I know, but it's been about 7 years that we've been wanting to do this since when we bought this house (new) in 1995, we didn't take any upgrades in the house since we were literally broke after sinking so much into the down payment of the house. We kept thinking, we'll update it in a year or 2....and along the way, we've upgraded all the appliance. But, 13 years later, it's time for real wood cabinets, so since it all has to be ripped out, we might as well replace the appliances again, since some are already 10 years old, and not working they way they should.
So...we've got that going on now....construction to begin about end of June. Before and after pics will be shared here.
Anthony got me a digital camera a few weeks ago...one of those slim Olympus ones I can carry in my purse. 39 years old, my first digital. Matty's on his 3rd camera....but I'm still attached to the 300mm zoom of my SLR film camera. Yes, I mail film out to be developed....how old school!
I'm still reading the manual and taking many pictures along the way....when I get to the part in the manual where they tell you how to download, I'll post some pics here.
At work I'm completely engulfed and overwhelmed with a project that will have me in NYC for a few days for meetings.
Plus....it's almost decision time for the boys and their educational futures, their summer programs, etc. Both boys are "graduating"...one from Pre-school going to K and one from Elementary going to Middle....so there are ceremonies to attend, special field trips, parties, (NOT in my house!!) etc...
More later....

This man....

2008-04-17T07:26:00.004-04:00

You know...this picture deserved a post. A's friend e-mailed him this picture. We were all all the same Sweet 16 last Friday night and Anthony and I had a great date night out.

Look at this man...first of all, he's very handsome. When I look at this man in this picture, I know why I married him, I know why he's a really great husband and father.

Those who know us both, know that we are polar opposites on most things...except the things that count, how we raise our special children, how we manage our home life, our financial life, and how we treat each other.

I love him with my whole heart and soul...with every part of my being.

And I'm lucky, and I know it.

My marriage has been VERY challenging to me...at different times, and in different ways, for the last 14 years. And I know that I'm in the minority in that these challenges have made my marriage stronger, the ground we stand on is firm, but it wasn't always. The first few years were very hard, and then we had Matty. That alone could have shattered everything. Having 2 special children would shatter most marriages, and I understand how it could. Let's not forget the 6 years in between M & B and what we went through to get a sibling for Matty.

But I married THIS man. And this man has a heart like no one I know. This man can embrace and love unconditionally. He always tries to do the right thing, he NEVER puts himself first.

He puts me first. He has since we started dating in April of 1992, since he asked me to marry him in June 1993 and especially since we married in June of 1994.

He still puts me first, and he worries about my happiness and well being. He cares that my life is everything I want it to be.

He puts our boys first too. He has a lot of love to go around.

Let's be real though...he's not perfect.

He has issues like all of us, and some of his issues break my heart, but out of respect for him, I won't talk about them here. Some of you reading know how it's been for me the past few years where A's family is concerned, but we seem to be moving in the right direction finally...and God willing, amends can be made before it's too late.

I digress....I love this picture...my face looks great to me almost 1 year post reconstructive surgery. We look like an old married couple out on a date enjoying ourselves...my husband...43 years young....handsome as ever....and I adore him!

Mid-April Catch Up Post...what's been happening

2008-04-17T06:36:00.002-04:00

I got tired (ha!) of trying to catch up with this blog...so here's a BRIEF re-cap of what's been going on.

Ben turned 5 on 3/28...on 3/29 he had a great party with this classmates, cousins and friends at one of those inflatable obstacle course indoor playgrounds that recently opened up here. We had the family party that night too. It was lovely....he had a great time, understood it was HIS birthday, sang, blew out the candles, it was all good. Photos Here.

Matty will be 11 on Saturday (4/19). He's having his party tonight at his favorite Italian restaurant with about 15 kids...dinner and cake. We aren't having his family part until the 27th since we have other parties to attend this Saturday and Sunday, plus my parents are away and won't be back until next week.

I can't believe how big my boys are getting...and I can't believe how amazing they are! I'm so proud to be their mommy. They have such a mutual respect and care and love for each other that is so genuine. They do get upset with each other if someone takes something away from the other, or if they can't agree on what show to watch....but they get over themselves very quickly, and return to special bond that they have.

They each have such different strengths and weaknesses, and it's complementary to the other.
There are times when I get why I was chosen to have these boys in my life. They teach me things that I need to know. They keep me in check.

A and I are still working on Matty's school placement for next year, but I think we've found the right place for him. We still have to observe the program in the district, but I know that's not the right one for him, it's just that I want to see it for myself. The only thing for me is that I want Matty to be happy. School is very academically frustrating for him, so I hope that putting him in a school setting where the focus can deviate from the core curriculum, that he'll not only be less frustrated, but he may also learn about things that he can use in HIS life which will be different from that typically developing child sitting in a regular classroom when they both get to adulthood.

Ben's CST hasn't contacted me yet to talk about his K placement for the fall, but I will fight to have him in a mainstream environment for half of his day. He enjoys his time with typical children, something Matty doesn't or cannot do. He spends 3 hours a day, 3 times a week in a typical pre-school after his regular day and he currently mainstreams for part of his 5 hour day in the district with less affected children too. I don't worry so much about him....for now.

Thanks to my friend Charlotte.....she hooked me (well Anthony actually) up with this....for his joint pain and for overall wellness. We'll keep you updated as to whether or not it works.

So we still have a lot going on here....and I may never catch up, but I'm OK with that.

I caught a little bit of Maria Shriver on Oprah yesterday....and I really liked it. She talked about how she's 52 years old, and has been nothing but a manic "get up and do" person her whole life, and when her husband (Arnold Schwarzenegger) became Governor of CA, and she First Lady, her world went into a tizzy...and she had to stop and figure out who she "was" and what she wanted to be when she grew up.
The bottom line was that she wrote a book she was promoting....and her mantra is that you have to stop and just "Be" sometimes. You need to "show up" in your OWN life. You can't always worry about trying to get it all done, whether to please others or because you feel like you have to for yourself.

I'm going to try that....today! ;-)

Catch Up Post # 2 - The boys see Rick Springfield

2008-04-10T07:29:00.003-04:00

This took place almost 2 weeks ago now...that gives you a sense of how far behind I am. Click the title to see the pictures.

Long story short.....kids LOVE to watch Rick. He put out a live DVD about 2 years ago, and since then, my boys have been in love with him. Don't get me wrong, I tried for years to influence them, I needed more people around me on Team Rick, but it never seemed to work...my boys were more into age appropriate stuff...the Wiggles, Laurie Berkner, etc....which is fine.

Once they had a visual of Rick, it exploded from there....we now have 2 guitars (not kiddie ones either), 2 sets of drums, microphone....etc. It's a stage in front of the big screen for the 2 of them...surround sound...you get it.

Against all odds, we took the kids to see Rick at the State Theater in New Brunswick (NJ). We got tickets for the 10th row (a sacrifice to me, I like to sit closer..HA!) but in a small theater, we were still in VERY close range, and I was panic stricken when we got there to see how close we still were, 10 rows back.

I have to say, they had the times of their lives! They both had sound blocking headphones, but Matty took his off after a song or 2, since it was unusually not loud for a Rick show.
Rick crowd surfs each time he performs, and as if someone was looking over us, he came straight to our row, gave our Ben a pinch on the cheek and tousled his hair, his wild hand flapping and laughter giving away what a good time he was having...Matty got a high 5 too. Priceless!

These are Matty's pics from that night....not bad. It was a good time! I think my Rick Springfield circle has become complete...it might be the end of the road for this.

I'm ready for some closure...and taking my kids to see what I've been obsessed about since age 13, It's like I'm done with this now. My husband has been MORE than tolerant AND supportive as concerns Rick....I want it to end on a high note....we might have achieved this.

Enjoy Matty's pics.....Ben's Birthday Party still to come!

Catch-Up Post #1, Our Trip to Cancun

2008-04-01T06:07:00.003-04:00

Our stay in Cancun was wonderful. Anthony and I had been there in our single days in the late 1980s, but it looks nothing like what each of us remembered.

The Royal Solaris Cancun was the perfect place for us. It was not far from the airport. It is an all-inclusive hotel with a choice of pools, choice of restaurants, a beautiful beach, everything we were looking for.

We arrived about 2pm Thursday and were in the pool by 3pm. Kids love to fly, and that just makes it easier on everyone. Our flights were on time, and without incident.

We did nothing but swim and play with the kids for the next 3 days. Sunday we took the boys to a "Wet N Wild" water park, which was a LOT of fun.

Admittedly, I was nervous about the Royal Solaris and Mexico. When I told people that we were going to Cancun, they sort of made a frown and said "Be careful of the food and don't drink the water." Let me tell you something...the food was amazing...bountiful, huge selection and around the clock availability. The fruit was so fresh, great vegetables, great Mexican dishes....The tap water is filtered and we all drank it (in the restaurants) and we didn't have one single issue. Everything was just as I had hoped.

If you click on the Title of this post (link) you can see Matty's pictures that he took with his digital camera.

Please note that the pictures that have all 4 of us, Matty picked a location and set it up with a timer...he's amazing.

Enjoy!

More posts later....Ben's Birthday Party(3/29), the kids see Rick Springfield (3/28), I see my favorite General Hospital characters (3/30)...

Happy Birthday Boo Boo Bear!

2008-03-28T06:21:00.004-04:00

I cannot believe that Benjamin...Boo Boo Bear to us...turns 5 today!

Happy Birthday Sweet Ben! It feels like yesterday that I had him...it was a Friday as well that year, it was unusually warm for March, a beautiful sunny day.
I had a planned c-section b/c Ben only has 1 kidney that at the time was blocked, so they didn't want to put him through the trauma of labor. Meanwhile, it was me who ended up having a blood transfusion the following day b/c of the stress of child birth.
He has come such a long way...when I look at him NOW, it's hard to imagine how I had to carry him everywhere until after he was 2 b/c he didn't walk until he was almost 2 and a half. He didn't sleep through the night until well after 2. He didn't eat solid food until almost 3, too many oral motor issues.
Now? He's chattier than Matty (who's almost 11). Yesterday he told Matty to "Pull yourself together" when Matty was crying about something. I laughed...such a mimic and a parrot Ben is. This boy will eat ANYTHING...he'll drink ANYTHING...he'll go ANYWHERE....so unlike my Matty.
I don't think in my lifetime I will understand how Fragile X Syndrome works....both boys, same syndrome, vastly different and completely unpredictable.
Today is our last day of spring break....boys have been off from school since we left for Cancun on the 20th. We have a lot going on this weekend, but I will post all about our trip once they get back to school. It was incredible though.

Addios...for now!

2008-03-19T14:38:00.002-04:00

Keep your fingers crossed...we're going on vacation tomorrow...to Cancun!

We have been truly blessed this year that we're able to go on vacation again this year.

The kids are soooo excited! I can't wait to see their faces when we land someplace warm and they are able to go in the pool tomorrow afternoon!

Happy Easter to all!

Invisible Moms

2008-03-18T06:34:00.002-04:00

This sums up how it feels to be a mom on those days when you wonder why you got out of bed! It is a bit lengthy {sorry ;-)} but worth the time. Thank YOU Julie Z for sending me this...she knew I was having a tough one last week...and she made me smile!

____________________________

I'm Invisible

It all began to make sense, the blank stares, the lack
of response, the way one of the kids will walk into
the room while I'm on the phone and ask to be taken to the store.

Inside I'm thinking, 'Can't you see I'm on the phone?'
Obviously not; no one can see if I'm on the phone, or cooking, or
sweeping the floor, or even standing on my head in the corner,
because no one can see me at all. I'm invisible. The invisible Mom.

Some days I am only a pair of hands, nothing more:
Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human
being. I'm a clock to ask, 'What time is it?' I'm a satellite guide
to answer, 'What number is the Disney Channel?' I'm a car to order,
'Right around 5:30, please.'

I was certain that these were the hands that once held
books and the eyes that studied history and the mind that graduated
summa cum laude- but now they had disappeared into the peanut butter,
never to be seen again. She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating
the return of a friend from England. Janice had just gotten back from
a fabulous trip, and she was going on and on about the hotel she
stayed in. I was sitting there, looking around at the others all put
together so well.

It was hard not to compare and feel sorry for myself as
I looked down at my out-of-style dress; it was the only thing I could
find that was clean. M y unwashed hair was pulled up in a hair clip
and I was afraid I could actually smell peanut butter in it.

I was feeling pretty pathetic, when Janice turned to me
with a beautifully wrapped package, and said, 'I brought you
this. ' It was a book on the great cathedrals of Europe. I wasn't exactly
sure why she'd given it to me until I read her inscription: 'To
Charlotte, with admiration for the greatness of what you are building
when no one sees.'

In the days ahead I would read - no, devour - the book.
And I would discover what would become for me, four life-changing
truths, after which I could pattern my work:

No one can say who built the great cathedrals - we have no record of
their names. These builders gave their whole lives for a work they
would never see finished. They made great sacrifices and expected no
credit. The passion of their building was fueled by their faith that
the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a
tiny bird on the inside of a beam. He was puzzled and
asked the man, 'Why are you spending so much time carving that bird
into a beam that will be covered by the roof? No one will ever see it.'

And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was
almost as if I heard God whispering to me, 'I see you,
Charlotte. I see the sacrifices you make every day, even when no one
around you does. No act of kindness you've done, no sequin you've sewn on,
no cupcake you've baked, is too small for me to notice and smile over.
You are building a great cathedral, but you can't see right now
what it will become.'

At times, my invisibility feels like an affliction .

But it is not a disease that is erasing my life. It is the cure for the disease of my own
self-centeredness. It is the antidote to my strong, stubborn pride. I
keep the right perspective when I see myself as a great
builder. As one of the people who show up at a job that they will
never see finished, to work on something that their name will
never be on. The writer of the book went so far as to say that no
cathedrals could ever be built in our lifetime, because there are so few
people willing to sacrifice to that degree.

When I really think about it, I don't want my son to
tell the friend he's bringing home from college for Thanksgiving, 'My
mom gets up at 4 in the morning and bakes homemade pies, and then she
hand bastes a turkey for three hours and dresses all the linens for
the table.'
That would mean I'd built a shrine or a monument to
myself. I just want him to want to come home. And then, if there is
anything more to say to his friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot
be seen if we're doing it right. And one day, it is very possible
that the world will marvel, not only at what we have built, but also at the
beauty that has been added to the world by the sacrifices of
invisible women.

Great Job, MOM!

Share this with all the Invisible Moms you know

... I just did

God doesn't like ugly.....

2008-03-16T12:04:00.002-04:00

You know? I had 2 comments re: my Thursday post that were from unknown users...browser hijackers!
They post things like...click HERE and Warning! They want you to click on their link and then they own your browser and in the end, your PC. It happened to me about a year and a half ago....I unknowingly cliked on a link in an e-mail and itstead of clicking on the X to shut the pop up, I foolishly clicked the No button in the window.....I had no control of my browser after that.
My IE ONLY pointed to the page of this malware software....and I had to have my hard drive professionally repaired....by a good friend's husband.

Now.....I see that these super mean people are posting 2 comments on my blog....and I deleted their comments, but for the safety of everyone reading this, I will moderate coments from now on, so that I don't have to delete them once they are here.

Happy Palm Sunday ;-)

Thursday Thoughts...

2008-03-13T06:13:00.007-04:00

Here's a quickie picture of Ben from my parent's house last Saturday...Happy 70th Birthday Papa! Here's my dad and my husband....
I work from home today...already started my day. I have to get the kids up at
8, shower them both and dress them, give them breakfast, and send them to school at 8:45. I see my trainer @ 9:30 for an hour. Cleaning lady comes at 12:30, Ben comes home @ 12:30, Matty @ 1:30...because you know, you need a week of half-days the week before spring break starts!?!?!
We had a meeting last night with Matty's 5th grade teacher, and discovered that the suggestion to send him out of district to a private school started with her. We didn't talk about Matty's progress, we talked about why he should not go to the middle school in the district. I still have a tough time talking about it, and got teary eyed in front of the teacher....how unprofessional of a special needs mom!
We have one more private school to look at and then we want to observe the program in place in the middle school in district. That's priority 1 after vacation.
I have so much errand running to do today too. Have to get a birthday gift for a boy in Ben's KA class, who has a pajama birthday party from 5-7 on Saturday. I have fundraising distribution to do in one of the schools. Have to return something I bought in the mall. Both boys have speech from 4:15 to 5:15. I have to schlep them with me to an IPL appointment @6:30 since my sitter is not free. What a day it's going to be.
Plus, we're going away at the end of next week...We have to pack, which we can't do, since we haven't told the boys to avoid distracting behavior in school. Ha! Imagine their surprise when I tell them Wednesday night that we're going on a plane on Thursday!
A week to go....and sooooo much to do!

Things are looking up...a little

2008-03-06T06:26:00.005-05:00

Anthony and I went to see the school on Tuesday. We were there about an hour and had a tour of the entire facility. We didn't know what to say to each other as we were walking out. We could both visualize Matty there. We don't want to jump the gun, and after some thought, I decided it's in our best interest to visit 1 or 2 other schools to have a reference point. The more I think about it, the less angry I am that my district wants to send Matty out. They really don't have a program suitable for him in the middle school. From parents I've talked to, there is an autistic class that is 100% self-contained and there is no mainstreaming. Then, there is a resource room setting, where kids changes classes for everything except math and reading, where in theory, the resource room teacher teaches to each kid on their level. That doesn't work in my opinion. That's what I've been through since the first grade...a self-contained environment with 1 teacher and various assistants based upon the number of kids (8-12) each with a different disability.

What I noticed first in the private school was that in each classroom, each child had a cubby/desk with walls that extended out, so when they're sitting doing seatwork, they have a visual lesson plan hanging in their desk, they know exactly what they are supposed to be doing at all times, and then they rotate in the class to working with 1 of 3 certified teachers in the classroom. What struck me was the serenity and peace in the classroom, kids weren't distracted by my entering, they looked at us, said good morning, and returned to work. They all have customized lesson plans (they implement the IEP in place, making revisions as needed after 30 days). The seatwork is at a level lower (re-inforce) than what it taught by the teacher, so that the child can do seatwork unassisted...no frustration, no reason for avoidance. The teacher teaches a new lesson, and then the group work is a bit challenging so they have a teacher to help them through it, and then THAT becomes seatwork the following days once it becomes mastered. In other words, they breed success so that the students learn to work independently.
They have vocationsl areas that the kids earn tokens to visit and utilize. A bakery, a print shop, a nail salon (for girls ;-)), school store with real items that can be bought with tokens, a cafe. These places also serve as teaching the kids how to handle themselves in a community setting. They have big ST, OT and PT areas.
It really is a nice place. The kids were much higher functioing than I imagined, and they take kids from over 40 districts in NJ. If Matty isn't the right fit, they won't take him / keep him. We shall see. We're going to see 1 or 2 other places and then meet to decide his fate for the fall.

Ben is now in the mainstream for 1.5 hours a day instead of the 20 minutes he was getting for the last 6 weeks. It's a 2.5 hour program. In theory, he's supposed to be there for the 2.5 after 4 hours in the self-contained classroom. He should be in there for the full time 6 weeks later, no? Imagine my alarm when I learned he was still only going for 20 minutes after 6 weeks of starting the class. That was the same meeting where they told me he belonged in an autistic Kindergarten....OY! Not even going THERE.
So now, he's going for 1.5 hours since Monday after I called and told them I wanted a game plan (in writing) for their time table to get Ben into this class for the full 2.5. So he currently gets dismissed at the same time, 2:15, so he can go to his typical preschool from 2:30 to 5. He's going to be in the mainstream for the full 2.5 by April 1. OK...fine. That will totally mess with the private transportation I utilize to take him to the typical preschool 3 days a week...he's going to be there only for an hour after April 1, where as he goes for 3 hours 3 days a week now.
Whatever!
On a lighter note...I got a promotion at work. Back when I worked for Marsh in the 1990s and met Anthony, got married and got pregnant with Matty, I was a client representative (broker). I was on the verge of qualifying to be an officer, an Assistant Vice President. Had I returned to work after Matty, I probably would have gotetn promoted within a year. Fast Forward 10 years later...I didn't go back, how could I with my Matty and his needs? When I returned to work in the summer of 2006, I was grateful that they bridged my service back to 1997 when I left, so I was getting more vacation, more 401K, etc...than my co-workers in this new unit I work in. I didn't even think about about being an officer, I was getting paid, that was all that mattered. Out of nowhere yesterday, my boss calls me over and tells me that effective April 1, I'm an Assistant Vice President. WOW! What pure satisfaction....getting promoted without having to ask for it. She didn't even know me back then, she's new to Marsh (2 years), yet as my manager, she took them time to review my personnel records back from when I was a broker in the 1990s and she told me she thought to herself, she would have been an AVP a long time ago had I returned to work. WOW! She must see see me talk to all the Managing Directors in my office who used to be my fellow broker trainees and drinking buddies back in the day we all worked in NYC. It's so funny how I was so taken by surprise...that was the best news of the day!

Is it really March already?

2008-03-03T09:24:00.002-05:00

Wow....March 2008!

We're going to look at a private school for Matty tomorrow. There. I said it out loud. I was completely blind-sided when my CST called me and wanted me to go look at a school for Matty. A private school in another town. A school that is not part of our district. Wow. Yes, we've been having behavioral issues. Yes, I requested a Functional Behavior Assessment (FBA) and got one. Yes, I know the meds aren't doing all they are supposed to be doing....but it's sooo much to juggle, it's like a recipe that you have to tinker with so much, that you're never sure if it's going to be good or not.

But "out of district"....I've only been a part of the special needs community here for 8 years, but traditionally OOD placements are the children with criminal history, emotionally disturbed, severely affected by what ails them. Not my 11 year old with Fragile X Syndrome! And it's not b/c he's my son and he's so special(though truth be told, he is ;-) ). It makes me physically ill to think about plucking him out of my school district and sending him out.

It's more of why can't my school district make a program to fit his needs? What's the purpose of his IEP? Isn't that the license you need to tailor a program? It's March, in 6 months you can't make a program for him when he enters middle school? I realize it's a transition year, and middle school is a completely different setting than elementary.

Why do they have to send him to a place where no one knows him, and we have to start all over? I don't know... I have to keep an open mind when looking at this school. It just saddens me that I've worked so hard to make his program right for him, and it feels like it was all for nothing.

And Ben is transitioning to Kindergarten. I had a meting last week to discuss the re-evaluation process for him and what the options are for him. I sat there with his teacher, SLP, and a member of his CST. The CST (Psych) suggested that we place him in an autistic Kindergarten. I nearly fell out of my seat. I looked at the teacher, who saw my dismay and feared she'd have to restrain me. My son? Yes, he's in an ABA environment in the AM, however, he's the most verbal in his class. He mainstreams out of this class, and to a less restricted class in the PM, and 3 days a week, after school, he goes to a typical pre-school. You want to put my son in a restrictive environment? With exploring the possibility of mainstreaming after a "few months"?

I'm nauseated now....must stop typing!

Oprah gained a fan today...ME!...

2008-02-26T18:17:00.003-05:00

You know...I DVR Oprah every day just because, well, it seems like such a mommy thing to do.
Turth be told, I rarely watch the episode...but I will if I know in advance that it's something I want to see...anything about children and autism spectrum disorders, health and fitness, shopping, home makeovers, people makeovers, etc...
I really enjoyed Monday's episode with Valerie Bertinelli, and learned a LOT about her that I didn't know.
Today also proved to not disappoint. WOW!
I don't like (achem..try not) to blog about Rick Springfield too much...because let's be honest, I lose a little credibility each time I do. I'm a full-time working mom with 2 Fragile X kids, a great husband, wonderful family, I am very involved with my kids and their "stuff" and it leaves little time for much else! Truth is, I love his music, and he saved my life in many ways because of his music...and a chance to see him sing live, is to me, more than a little slice of heaven.
By far, it was the most relaxed Rick I have ever seen. He really found a peer in Oprah. He was totally comfortable talking to her, and she did her thing...she asked some out of the norm questions, which I LOVED.
That's ALL I'm sayin......

Fragile X Webring

2008-02-26T07:47:00.003-05:00

You'll see over there to the right, that I've joined a Fragile X Webring which links other blogging FX blog owners together.
Sometimes I still cannot believe how intertwined in my life Fragile X has become. Both boys, my brother, sister...I carry it....it's constant.
There is so much MORE that I want to be doing to raise awareness and get the word out there, and I spend so much time thinking about different things I could do, but I have trouble putting all of them into action. My ideas are endless....I need to be better at taking action on my ideas.
I'm getting ready to set up a Family Foundation, which will give us a means to collect the money we fund raise and give us a name to sponsor events under, etc....logistics.
I'm trying to think of a good name...and if you have one, please e-mail it to me. I had a few, and when I searched them in LegalZoom, it turns out they were all taken either by other non-profits or companies.
I'm also trying to think of something we can create and sell that would help to raise money...the family that started the PA Fragile X Association have these GREAT necklaces (that I wear daily)
and car stickers to raise awareness. If you have ideas about that, by all means, e-mail me.
That's it for today...I hear the boys running the halls upstairs....time to get them ready for school.

Am I really at home alone?

2008-02-25T10:28:00.003-05:00

I feel like I should pinch myself...it's Monday morning, I'm working (from home today) and BOTH KIDS ARE IN SCHOOL....husband is AT WORK!!!

It's amazing how time stops when your household is ill. Between my husband and sons, this house has been sick since February 13th.

I had Benjamin home sick last week...and Monday(18th) was a Holiday and Friday (22nd)was a snow day, so I had Matty home then too! Anthony took Friday off too to take Matty for some testing, so we were all home, OMG....it was hard!

By Saturday I was going a bit loony being stuck inside the house...the only time I got out was Wednesday when I went to the office.

Dad put Benji on the bus and sent him to school only to go to NYC, pick up his laptop and turn around and go get Ben from school. He really had no choice, knew he shouldn't send him, but I had to go to a meeting in the office that day, and there was no way I could stay home. He didn't have his laptop, so we sort of used school as a baby-sitter for 2 hours...which made me feel like a bad mom, but at least we e-mailed the teacher to warn her, she said he was fine and could stay the whole day, but Anthony picked him up anyway.

Saturday I went to have a manicure and a facial....the best 2 hours of my week. We all needed a little bit of distance from each other. I spent the rest of the day running errands, grocery shopping, we went to Church, and then had a lovely dinner out at Cuginetta's house, down the block.

Yesterday we had basketball with both boys, then A took the boys to a birthday party while I cooked since we had friends of ours as their boys over for dinner...the kids had a ball.

So....after our company left....I showered the kids, got them ready for bed, and went to my room to say a prayer that both kids COULD GO TO SCHOOL TODAY.

We watched the Oscars....award show junkie that I am....I love that stuff! I love the glamour, though Cameron Diaz forgot to brush her hair...and even in the crappy LA rain, it was still amazing. I loved the Regis special on ABC, talking to the nominees as they walked it....it was like E!'s 2 hour pre-show crammed into 22 minutes....it was perfect editing!

So, hopefully we're back to "normal" and kids will be in school all week.

I have a LOT going on with both kids in school, who are both transitioning to different setting after this school year ends. Matty to Middle School, Ben to Kindergarten, but in the special needs world, a transition year means a lot more than a new bus driver! I wish it was that easy!

Tuesday ain't much better....

2008-02-19T09:50:00.002-05:00

Well, 2 out of 3 ain't bad I guess.

Anthony went to work again, but still has such a nasty cough that I don't know how he manages.
Matty went back to school...about 95% better...still has to blow his nose every so often.
Then there's the Momma's Baby, Benjamin. He's still warm to the touch, and his nose runs clear like it's raining :-( I am working at home today, so I decided to keep him here with me, to give him one more day to rest and re-charge.
Had to cancel my trainer for today....HATE doing that b/c it means I have to work out once everyone is asleep..or maybe I can sneak it in if someone takes a nap.
It also means my errands won't get done....had some grocery shopping to do, dry cleaning, etc...

Still cranky....