Thursday, October 31, 2013

Bah-Halloweenbug

Halloween. Everyone seems to love it. Except me. Yes, I'm the Halloween Scrooge. I didn't even like it as a kid. I never wanted to be anything but me. I remember one cool costume my mom made- I was a tube of Colgate. But it was made from chicken wire and cardboard. I couldn't sit with it on so it had to come off to sit in my desk at school, which was a bummer since everyone else had theirs on. One year, I even went as a "hooker". Yup. It was the 80's and Pat Benetar made hookers into "Ladies of the Night" and they became acceptable for tweens to emulate in costume for Halloween with a side ponytail and some spray on hair color.

Back then, we also didn't have problems with childhood obesity. We left our houses in the morning, played Manhunt all day (on the weekend) and came back when it was dark. We were outside running around playing and riding bikes all the time. There were no food allergies as the norm and not the exception. We also didn't have so much processed food, problems with food dye and poison in food imported from other countries. Most of our moms in suburbia were home at least part of the day and cooking dinners. There weren't even microwaves for a good part of my childhood. I don't happen to cook dinners, any dinners, so trust me, I'm not even close to saying that's what we're supposed to be doing. But there certainly weren't the amount of choices for meals or the ease of getting pretty much whatever, whenever. And there were definitely less processed foods/ingredients.

I'm just saying things were...simpler. I don't think moms were feeling guilty for working vs staying at home. People just sort of did what they had to do and were quiet about it. And they weren't obsessing on how to make class parties grand. No internet to compare parties, share décor ideas, and try to out-do each other. And "parties" in school were few and far between, were short, at the end of the day, and included a cupcake or a piece of candy and some kind of holiday-related craft. So getting some candy on Halloween wasn't a big deal. I doubt it wasn't even discussed because there was no social media to debate the merits of candy on and no letters gone viral about how kids are getting fat and their parents shouldn't be letting them eat candy. **For the record, I think that letter lady is nuts and mean. There is also MYOB, which she should exercise better**

Separately, Halloween "issues" or elements wouldn't even be on my radar- like Trick or Treating, a school party, Trunk or Treating, house parties, etc. Separately- one of these things or events, even two, aren't a problem for me. It's the damn OVERLOAD. It's the excess of it all. Not the candy or treats specifically. Wait till the November/December holidays when I really end up on a rampage about excess. But Halloween is also now a "gifting" holiday? I see advertising for Halloween GIFTS?! Are you kidding? It's the age of Pinterest, the age of Mompetitors, and just mountains of excess. So there are school parties that take up a whole morning or whole day, parents are now "invited" (code for "expected") where the working parent feels guilt because they can't make it, and it's filled with garbage food the kids don't need or wouldn't. WHY?? Personally I feel like it's competition. Who's the "BEST" mommy? Intensively labored over costumes that are could rival costumes for a Broadway play, elaborately homemade treats, over the top parties with candy, baked goods, intricate costumes and more. It's always more, more, more. And frankly, I'm over the "more".

Listen, I am not anti-kid or anti-fun and I'm personally definitely not anti-candy. Anyone who knows me knows that. I'm anti such gluttony, overkill, and overindulgence. Bah-humbug right? NO. E gets to dress up. But I don't plan it out for him, I don't care if it's the best or most elaborate costume, and I'm glad they don't celebrate Halloween in his school. Because he's in preschool. Guess what? Preschool is ALREADY FUN just by nature of it being preschool. It's not demanding, he doesn't have homework, he sees his friends everyday, he gets to go outside and run around, sings songs, does yoga, and makes crafts. I'd like that to be my every day. Why do they need MORE? More candy, more partying, more everything? I'm sticking with the idea that it's enough already. In some conversation I was involved in someone said something like, "Well, without the parties it's just school". YES. That's what it's SUPPOSED to be. Just. School. And school for them happens to BE fun. The only reason a kid would say he doesn't want to go to preschool is because of some separation anxiety. Not because of the workload or drudgery.

Everything and everyday doesn't need to be made into the most fun ever. Because that isn't real life. I don't want to break their spirit but Jiminy Crickets, we were FINE with school just being school. And not being entertained for every third Tuesday. There are even more made-up holidays. I don't care what Wikipedia or Hallmark says, in no way did anyone I ever know celebrate Sweetest Day, Grandparents Day, Clergy Appreciation Day, or National Doctor's Day.

Rain is expected this Halloween. So I've heard about parents wanting to CHANGE THE DAY FOR TRICK OR TREATING. Ever heard of an umbrella? Now we're asking to change the day of the calendar holiday because Precious can't get wet?? When I was a kid, I remember some Halloween days being so cold, you had to wear a giant winter coat over your costume! Maybe even a hat & gloves. People just had to assume you were dressed up for the holiday.

There are now Trunk or Treats where kids aren't even expected to walk around and ring doorbells. Parents are decorating their cars, sitting in a parking lot and kids are going from trunk to trunk. It's "safer" because the parents are right there, presumably you know all the parents, and you know the exact whereabouts of your kids. Awesome. I guess. But the kicker- these Trunk or Treats are often scheduled for some other day other than Halloween. Maybe it's the weekend before. AND, they're also having a giant party at school at some point, that the Class Moms have been painstakingly organizing and planning for months, that is supposed to end up rivaling the prom for the amount of work put in. Lastly, there is actual trick or treating ON Halloween. Now Halloween will have gone on for about a week. Or more. Some of the kids don't even understand the days of the week or know what the meaning of a "month" is in relation to time. So they just start thinking everyday is candy, party and costume day.

It's. Overkill. Plain and simple. This is where you can call me old. In this particular case, I long for the "olden days" of the 80's and 90's when parents weren't so overly involved trying to be SuperParent, catering to kids' every whim and trying to make each day full of sweets and endless fun and entertainment. Days where Halloween meant wearing your costume to school, being led around the school yard for a short parade and a short school party with just the class and the teacher for the last 15-30 minutes of the school day. A cupcake, a paper pumpkin and a lollipop. Then Trick or Treating with parents & friends. I don't know where all this overcompensation comes from but there has to be a limit. I can't be the only mom who thinks it's all crazy and has reached a fever pitch of epic proportion.

Happy Halloween. Enjoy, be safe, and good luck raiding all the "good candy" out of your kids bags. I'll be doing the "Jimmy Kimmel told me to tell my kid I ate all his Halloween Candy" YouTube assignment for fun. Just call me Mean Mommy.

Wednesday, October 30, 2013

Mommybites on the GO

Amy Morik has been working hard getting Mommybites out to Bergen moms so I thought I'd just send out some info here for any moms interested. I got this email from Amy this morning so I'm sharing here....They had a Work4Moms event recently that I couldn't make it to but hopefully I'll get to the next one or one of these other cool events.

Mommybites BERGEN is planning another Work4Moms event in fall 2014.

If you couldn't make Work4Moms but would like info from Dr. Karen Rancourt on "Pros and Cons of MOMS Re-entering Work Force" - email me - amy@mommybites.com
Now - presenting the latest and greatest Mommybites BERGEN live events - the great stuff keeps on coming!
Register NOW
Thursday November 14, 2013
Fitting Kids In, FINANCIALLY That Is
11am / Rosa Mexicano, Shops at Riverside
Darren Hugo, CFP(r), UBS Private Wealth Management
 
Tuesday December 10, 2013
Mommybites HOLIDAY BASH - The Ultimate Mom’s Night Out*
6pm / New Yorker Hotel, NYC
Mommybites NYC invites us BERGEN sisters across the bridge
*BERGEN moms attend for FREE (deposit required which will be refunded)
 
Thursday January 9, 2014
The Myth of Having If All –
Setting Up 2014 for Personal Success
11am / Rosa Mexicano, Shops at Riverside
Sarah Walton, CEO and Founder, Better Way MOMS

Tuesday, October 29, 2013

Mitzvah Day

I just got this announcement from the GRJC:

This Sunday, November 3rd is Mitzvah Day, sponsored by UJA Federation of Northern NJ.
     
As part of this special day of giving to others, the GRJC is running its third annual blood drive to help boost the supplies in our local blood bank. Although the drive runs from 9:30am - 2:00pm, we are especially looking to fill time slots between 11:30am and 1:45pm.
     
In appreciation for donating, all donors will be entered into a pool to win a pair of tickets to the SUPER BOWL (see below).
     
If you are able to donate, we ask that you sign up by contacting Jodie Stewart (jastewart@optonline.net) and Fran Skrobie (fskrobe@verizon.net). 
All donors will need to show photo ID and walk-ins are also welcome for the later time slots. 


Monday, October 28, 2013

Wax On Wax Off

I think we all saw The Karate Kid. The first one- with Ralph Macchio. Not the remake. Or the third one, which wasn't good at all. You get the point. It taught Daniel focus, self-confidence, and how to defend himself. That's what martial arts teaches. For us, the focus component is key. It could be said that both my husband and I have forms of attention deficit. But we slipped through the cracks in the 80's because we didn't cause trouble, teachers liked us, and we basically just flew under the radar. But we're seeing signs of both of us in E that lean toward his attention and focus being less than stellar. We don't want him to fall through the cracks so we're really paying attention.

I have a kid that runs around in circles. Not sometimes. Not just when he's excited. Not because he's practicing to be a compass. He can't stop himself. He has ants in his pants all the time. And sort of like the Perfect Storm, all in one week it has been brought to our attention that he has been having trouble focusing. He's fine, he's listening, then all of a sudden, he isn't. He's easily distracted. Sure that's partially age- he's a little over four and a half. But it's also a little bit more than that.

It was recommended to us to try signing him up for martial arts. We don't really have the time or the money but we feel like we have to do something so we signed him up. Lucky for us, there is a Tae Kwon Do studio right in the same shopping plaza as our business, so that was easy enough. Convenience is key. My husband and I both work so having a studio so close to school and work is a no-brainer.

E went to one class already and he loved it. He takes ballet, tap and improvisation classes. But this is different. He likes the other classes but when I asked him what he did, he says that he doesn't remember. But when we asked what he did in Tae Kwon Do, he actually showed us the moves he learned.

The time commitment isn't too difficult either. He can only come one day. That's all the time I have free and the only way I can keep it from being cost prohibitive. The philosophy of this studio comes across as- More would be better but one day is better than none. I like that. I didn't feel pressured to do more or like he won't get anything out of the one day. And later on we can revisit doing more but for now, while he is committed to these other activities, the one is enough.

They are doing an introductory offer/classes so I thought I'd put it out there:

Friday, October 25, 2013

Late Late for a Very Important Date

I have Seinfeld playing in my head a lot. Today it's, "You can TAKE the reservation, you just can't KEEP the reservation".... Right now, it's an hour past the time someone made an appointment with me to do lampshades for her. She came in yesterday, she didn't bring her lamps and we had a long discussion about what we could do if I had her lamps. She asked what time we open, I told her. She told me she'd come in right when we open and asked if I'd be at work. I said I would make sure to be here. This wasn't a casual arrangement. This was an appointment. I got to work a little early so I would be prepared to work with her if she walked in as soon as the door was unlocked to customers for the day.

So I'm sitting here, sick (I have a cold), without her, wondering when it became the norm to just not show up for appointments, to be late, to just have a complete lack of respect for other people's time. Sure, something might have happened to her, and I hope it didn't. She isn't the first and I'm sure she won't be the last. Even so- fine, it's retail. It happens.  But it doesn't only happen in retail. I see it all the time, in every aspect of life. People don't show up or show up late to doctor's appointments, interviews, dinners with friends, work events, drinks, whatever.

I've always had late or flaky people in my life. I'll just never get it. I see to always gravitate toward people who are my opposites. And I love them. I love you but I just can't/won't make plans with you. Ever.

I know, theoretically, it's that they just think they have more time in the day than actually exists. They just try to cram in too much. But that shouldn't be anyone else's problem. And if you're late, it does become someone else's problem. Same with just being a no-show. We're all busy. We all have lives, kids, pets, illness, traffic- basically potential booby traps to make us late. Yet, some people get trapped and some people find a way to sidestep the traps.

Someone just told me a story where a neighbor mom rsvp'd yes to her daughter's birthday party. Then the mom and her daughters just didn't show up. Her daughter was upset. She didn't know whether she should ask the mom what happened. I said of course I would totally ask her. Other people said not to ask her because she probably already knows she's flaky. Well, ok, but that doesn't make it acceptable! She should know that in being irresponsible she hurt a little girl's feelings.

I feel like certain people seem to do it so much, it's just expected and they almost get a pass. It gets blamed on everything under the sun. Or it's played off like it's no big deal. I don't buy any of it. I have a kid. I'm just a punctual person. I literally start sweating if it looks like I might just be ON TIME but not a few minutes early. I don't know if it's nature or nurture- my mom was always the last to pick us up from somewhere or she'd forget to come at all, so I am hyper aware of time. I just don't see what's so difficult about making sure you get where you're going and get there on time. If my kid isn't finished eating and it's time to go, well the food comes with us in the car. That's why I never introduced syrup. He eats silver dollar pancakes with nothing on them- easily transportable. I'd rather he think all meals get eaten in the car than be late. If his shoes aren't on, then his shoes get put on in the car. If my hair isn't dried, then it isn't dried. But I leave myself enough time, generally, to get ready or "ready enough". If I don't have mascara on, then I have naked lashes.

I just don't know where this lackadaisical attitude toward other people's time comes from. I've had people tell me they don't MEAN to be late or rude or not show up. It just "happens". No, nothing just happens. You're totally 100% in control of getting your ass in gear. Sometimes I'd like to just sit around debating on Facebook vs getting in the shower and getting ready. But I don't. Because it's important to me not to keep people waiting. I know that my time isn't any more or less important than theirs. It's just common courtesy. At least give a call and say you're going to be late or not show up.

Maybe it's because we own a business and we have to be here that I am more sensitive to this kind of lack of respect for time. If we're sick, we're here. If our kid is sick- we're here. We just figure it out. My mom died out of the blue- we had to be here. It's just what we do. We are here no matter what. On time and ready to go.

Ok. So this was mostly a rant. I can get rant-y, I know. I just am bothered and perplexed by how rude we're becoming as a society. People want to point fingers at technology- iPhones, texting, Facebooking, whatever. I don't care what the reason is or where the finger points. The bottom line is that we need to take a look at how we treat each other and what level of respect we have for others in our orbit. If you make a plan or an appointment- stick to it. And be on time. The recipient of your courtesy will be grateful.

Wednesday, October 23, 2013

Halloween Parade

Annual Children’s Halloween Costume Parade

Oct 26, 2013

Location: Veteran's Park, Main Street Website: www.glenrockwics.org
Phone: 917-783-1746
Email: glenrockwics@gmail.com
Contact: Lucy Kelly
Glen Rock Women In Community Service (WICS) and the Glen Rock Chamber of Commerce are co-sponsoring the Annual Children’s Halloween Costume Parade on Saturday, October 26th.

Children, grades 3 and under, should gather at Veteran’s Park (off Main Street) beginning at 9:00 a.m. WICS will be distributing treat bags; donuts and cider will be available.

The parade will start promptly at 9:30 a.m. Children may begin trick-or-treating at participating merchants immediately following the parade. Please look for the ORANGE PUMPKIN in the windows!

Tuesday, October 22, 2013

Horror Bowl

Come support Central School's fifth grade class at the "Horror Bowl" on Friday and Saturday night!

Central School’s annual haunted house proudly presents HORROR BOWL on Friday, October 25 and Saturday, October 26 from 6PM-9PM. Not so horror tours (lights on) for the little ones is from 6PM-6:30PM each night. $5 per person. In the Gymnasium, 600 Maple Avenue, Glen Rock, NJ 07452






Thursday, October 17, 2013

Dining Out Magazine & Autism Speaks

Outside the GRI 2012
Last Friday we attended another event benefiting Autism Speaks & The Art of Autism. This time it was sponsored by Dining Out Magazine NJ & The Robinson Network. It was at Son Cubano in West New York. We were invited by Robyn Levy, the owner/publisher of Dining Out. B met her in the summer of 2012. She was sitting outside the Glen Rock Inn, eating dinner with Rosie Pierri from RHONJ (Teresa's cousin/Kathy's sister) her wife & her sister. B was walking in town with E, saw them and instantly recognized Rosie. He got all the way home and said to E that they had to go back because "Mommy will be mad if I don't get a picture of Rosie". He was right. So he went back, sheepishly introduced himself, and got the photo. He texted me- I'm at the Glen Rock Inn, Rosie is here with a bunch of hot chicks and I got a picture of E with Rosie. They graciously talked to B through their meal. He became friendly with Robyn. Ever since, she's invited us to her events.

Heather Robinson & Robyn Levy
We'd never been to Son Cubano but it was a really cool place- inside and out. When we lived closer to there, we were down that way all the time. But it's been awhile. We didn't know it was so built up over there. I also didn't know that is West New York over there. Always thought it was Edgewater. The restaurant is right on the water with spectacular views, valet parking, and it's just really...clean...over there. I don't know how else to describe it. Just very new looking. Not that I thought it would be different but I was just struck by the feeling of new-ness. It was a little odd that as people are dressed up and surrounded by expensive convertible cars valeted out front there are people who live there walking or jogging by in their workout clothes but I guess it's that way in Hoboken too.

The event was invitation only and there was no set ticket price or donation. You were able to give whatever you were comfortable with. Then for your money, you got raffle tickets for a money drawing sometime during the night. There was a really cool photo booth that was donated by Adam Saber Entertainment. I've never seen anything like it. I know there are all kinds of party photo booths but this was the easiest one yet. You punch your email address in first and it sends the strip of pics to your email! And you get the actual strip right there also. I just thought the email aspect was really cool and unique.

Christina, her hair, Austin & Robyn
The food at Son Cubano was really good. They had passed hot hors oeuvres- chicken skewers, meatballs, Cuban sandwich, empanadas, coconut shrimp egg roll, and some I didn't try. I chased around the servers most of the time I was there. It was open bar too which is always nice. We were at Robyn's charitable event in October of last year too. She knows how to throw a party. I do have to admit that both B and I were both obsessed with & distracted by Robyn's wife Christina's hair to notice a lot of what was going on around us. We decided it's the most beautiful hair we've ever seen. We also got to meet Robyn's beautiful sister Cari and her friendly dad Steve, who B insisted was Joey Pants's twin.

On a serious note, we were there to raise money for Autism. There was a young man there, Austin, that Robyn had met awhile ago, who has Autism & touched her heart. He got up, introduced himself and gave a short speech. It was a very moving moment. He does beautiful drawings you can see in the gallery of The Art of Autism page on FB.

Bergen.com & BC Mag both covered the event and there are photos on both websites.

Thanks for inviting us Robyn- it's always a fun party for a great cause!

http://www.facebook.com/DiningOutNJ

http://www.facebook.com/RobinsonNetwork

www.facebook.com/artofautism (where Austin's art is shown)

http://www.facebook.com/TheArtofAutism

http://shop.autismspeaks.org/

http://edura3.wix.com/soncubanonj

http://www.facebook.com/AdamSaberEP

http://mcarabelphotography.com/



Levy Family

"Joey Pants" & B








Wednesday, October 16, 2013

Know Your Vote

There is a vote today in NJ for Senate. Between my husband and I, we've encountered numerous people who don't know this. And every single one of them who didn't know- they aren't on Facebook. Say what you want about social media but I swear, that's how many people get their news, current events, human interest stories. Half the stories I see on the news I've already seen days before circulating on Facebook.

I don't work for Facebook, Zuckerberg isn't giving me a check to shill for him, but apparently, it's important to be on there just to have some news go in one ear. Then what happens to it is anyone's guess but at least something trickles in. I know people that say they don't watch the news because it's all bad. Or they just never seem to have time. Well, isn't it important to know the good with the bad. I understand wanting to live in a bubble, but I'm sorry- we just can't. Especially if we have children, we have to know what the hell is going on in the world. Watch the news, read the news, listen to the news, so you can be good at Jeopardy, if that's the only good reason you can come up with. You don't have to be a passionate activist, you don't have to be loud, you don't even have to tell your opinions or even have any concrete opinions. You can be undecided, independent, or you can pick a side. But you DO have a responsibility to KNOW. Be in the know. Be aware.

Trust me- it matters to me who you vote for, but it matter more that you KNOW the sides and that you go out to vote informed. Someone told my husband today that they didn't know the government was shut down. When he mentioned voting, they didn't know there was a vote and said, "Oh, I just vote _______________" (picked a side). I'd rather that person just stay home then, whether on the same side as I am or not.

There is a news story circulating now about a 14 year old girl who killed herself after being cyber-bullied by other 12-14 year olds. I first saw it on Facebook but now it's also all over the news since the main perpetrators have been arrested. I'm not going to get into the specifics of the case or whether jail of teens is an appropriate punishment for the crime. I'm not looking to debate that. What I am going to get into is, again, being AWARE.

Story: http://www.nytimes.com/2013/10/16/us/felony-charges-for-2-girls-in-suicide-of-bullied-12-year-old-rebecca-sedwick.html?adxnnl=1&smid=fb-share&adxnnlx=1381941013-dRMkIJXjvsTqoQReYk2Q0w

If you're not on social media and don't know it works and you have kids- shame on you. Because make no mistake- they DO know all about, how it works, and eleven year olds are on it. You can't just claim ignorance. Because when you inevitably give your tween an iPhone because all their friends have them, you're giving them a powerful piece of technology. It's like giving your kid a brand new car the day they get their license and then being surprised when they get in a car accident shortly thereafter. It IS a big deal to give your child unlimited access to social media and it should be treated as such. Not just- Oh, all the kids are doing it. How can I say no and let my kid be the only one who doesn't have a page?!

These are not just two disjointed thoughts- voting and social media. It's about being part of functioning society, having a voice, being aware, taking responsibility, and refusing to just go through the motions of life oblivious to what's going on around you.

And if you live in NJ, go out today and VOTE, if you do actually know what's going on. It's costing the state 12 million to have this special vote, so make your voice heard if you care about the issues NJ faces. If you don't know what's going on, I beg you then to skip it, get informed, and come out for the next one. Don't just vote for someone because they're with the party you normally vote with. Find out if that person represents anything you stand for, OR, use this time to figure out if you stand for anything in particular. Then sign up for social media so you can get some news by technology osmosis.

Monday, October 14, 2013

Lego Woe

I know that people live in their own bubble. We're all guilty of this. Of not really being involved or interested in something until it affects us personally. And that's ok. People get affected by stuff every day and then they are motivated. It would be awesome if people got more internal motivation but whatever. However it comes, we'll take it. I've been going to all kinds of charity events lately. I've realized, that while the cliché- "Everything happens for a reason" is annoying, sometimes it's true. Sometimes a famous person gets a disease and becomes a crusader to bring money and awareness to it. And sometimes a big company pulls a big, disappointing act where you get a bigmouth like me to spread some awareness.

I'd never thought much about someone having a "port" until Jocelyn, my friend with cancer, had one put in to deliver her chemo medication. It never looked odd to me, I guess because I'm an adult. And to some degree understand what it does. I never really thought about what it would look like to a child and how a child who has one might feel in front of other kids...

The following is Evan's story, as written to me by his mom. Be prepared for some extensive but explained medical terminology. I thought it was important to understand the whole scope of his story to get to why I'm doing this blog entry. Evan just turned six years old this past summer.


He was diagnosed with severe hemophilia at less than 48 hours old. The hospital does a heel test to newborn babies for all kinds of illness, disease, syndromes, etc at some point in your short stay after giving birth. A baby without hemophilia bleeds for a second then stops. Like a "normal" needle stick. Evan's PKU heel stick didn't stop bleeding. His foot bracelet had fallen off and the nurse that came in to check on him saw it on my bed. She offered to put it back on him while bringing him to the place where babies stay in the room since he'd just finished eating and fallen asleep.

When she unswaddled him she was alarmed because the feet and legs up to the mid-calf area were soaked in blood on his clothes. He went to the nursery where they held pressure for an hour before he clotted and stopped bleeding. He was brought to the NICU for tests that later confirmed his diagnosis.

At age sixteen months, E had a head bleed. It was a subdural hematoma in the left frontal and parietal lobes. It was a spontaneous bleed, meaning there was no injury to have caused it, that caused loss of muscle control, speech ability, and seizures. These seizures were ruled out as being caused by epilepsy, though he was medicated with anti-seizure medication for 12 months following this whole ordeal. We stayed two nights/three days in PICU, then were transferred to regular floor for the last 36 hours. During this time a PICC line to administer his factor (clotting medication) at home was unsuccessfully attempted to place twice. A PICC line is a peripherally inserted central catheter. It's a form of intravenous access that can be used for a prolonged period of time. Because inserting the PICC was unsuccessful, it was necessary for him to go through radiology, and under general anesthesia, for the second time in 24 hours, in order to have it placed. When he was discharged, we were told of the precautions with the PICC and to bring him back for possible infection if he gets fever of 100.5 or higher (which is the same guideline we have been following since he got his port). I was to infuse him every 8 hours through the line for the following four weeks on this regimen.

Three weeks after we got home, he had a fever, so went to hospital to be sure there wasn't an infection in his PICC line. No infection, but fever was terribly high. He suffered two seizures on this trip. First one he was blue/purple from not breathing. Took him a while to understand anything after nurse gave CPR and got him to start breathing again. Had another CT scan and found that the hematoma from three weeks prior had absolved. That seizure was considered a febrile seizure by the doctor.

He had surgery for his first port to be placed three weeks later. Surgery was easy, and recovery was good. Stayed in hospital three days. Has had several multiple night stays to rule out port infection due to fever.


When he was 4 his port was constantly squirting blood out whenever I would take the needle out
after infusing him. He was terribly bruised and it was tough not to go through the bruise anymore to access him (which I am not supposed to do). Had an IV placed in his hand that we went home with for one week to let the port rest. Blood spatter continued after we rested, so we did a dye study (where he goes in with a radiologist and they inject dye into the line while watching via some kind of ultrasound to see if the dye leaks. It did leak. The port line had pulled out of the aorta, so the meds weren't being distributed properly. He had four weeks of IVs in the hand. We'd go for a new one every Monday and he'd be on a board and wrapped up all week long so we could still infuse while waiting for surgery.

Evan got the port taken out and replaced July 2010. Surgery was scary for him this time, but recovery was excellent. He has had a few more hospitalizations for fevers with the new port, including one that caused him to miss the first two days of kindergarten last year.

In his life, Evan has never complained about pokes (as we call them). He has never cried or jerked away or fussed when I have come at him with a needle. He has been just as amazing with getting his blood drawn and IVs started. The only time he ever fussed was in the ER during the head bleed debacle, but mostly I believe it was because he just didn't know what the hell was going on.



He never really said much about the port or the infusions until the end of pre-k when he was invited to a classmates birthday party. He had always been cool at the beach or swimming in the pool with his cousins, and thought it was kind of cool when they'd watch him be infused. But at this party, he definitely felt different with his port. I don't recall anyone asking him about it, but that doesn't mean that one of the kids didn't.

Since then, he has had a tough time feeling like he's "normal". He doesn't like to swim in front of strangers or friends that aren't family. He doesn't want anyone to know about his port or his hemophilia.


He went through a period of saying that he hates hemophilia and wishing that he didn't have it so he wouldn't be different.


Who reads a story like this and doesn't feel touched? At least if you're a parent, you should. I have a boy not too much younger than Evan. It breaks my heart when a kid in his class tells him he isn't his friend and my son is upset about it. So I can only imagine having a kid with a physical difference that makes him feel self-conscious. Sure, we all have something. My two friends told me in Hebrew school that my ears were so big they looked like soup cups. Kids get made fun of for big ears, big noses, lazy eyes, etc. But to me, something like a port is different. Because there is real, life-threatening issue that goes along with reasons for needing a port, especially with hemophilia. Which, admittedly, I knew little about until my friend Sara & her son Evan, because it didn't affect me directly. I've never known anyone with hemophilia. BUT, I do have some limited experience, secondhand, with a port. Only recently, with Jocelyn. Had Jocelyn not discussed hers with me and showed it to me, I'd be clueless. As clueless as I imagine most people are, especially other children. It was scary for Jocelyn so I can only imagine what it's like for Evan!

So Evan likes Legos. Most little boys do. Sara says he mostly likes to make a Lego shop where the customers (she & her husband) can custom order their people. He gets the Lego magazine in the mail and follows the directions for their creations. He asks for Lego sets for all holidays and went to Lego land for the first time this past summer. Ethan likes them, but we're not "INTO" them like that. We have some Minifigures but only Harry Potter ones that came in the few sets I was able to purchase. I don't know much about them EXCEPT that you do build them like anything else with Lego. As in, you COULD put Hermoine's head on Harry's body if you want. So I'm thinking, it couldn't be that hard to make some "special needs" bodies. Like one with a port, if need be....The following is where Lego fits into Sara & Evan's story:

Now, to where the LEGO part comes in. He has always loved playing with them. He likes to create his own buildings/vehicles and play with them all the time. He most likes to create the Minifigures. It started as wanting certain types of people from sets that he wanted, but morphed into creating all kinds of people for him to play with and make as characters that he would literally sit for hours and create dialogue for.

A few months ago E was telling me that he was feeling down about having his port and wished that he didn't need it. I explained to him what we'd need to do in order for him not to have one anymore, but we're totally not at that point. That's going to take time. We were in Target at the time and he was looking at the LEGO sets. He wanted to get one of those packs that is just a little Minifigure. And when he took it out of the package to build it, he looked at the paper that had all of the different people offered in the series and he said that he wished there was a Minifigure with a port like he had.
 


I told him that I wished there was one too, and that maybe he could write a letter to LEGO about his idea, because there are lots of kids that have ports to treat various disorders and illnesses, and they'd probably like to see a toy that is like them, too. So he wrote the letter to LEGO and we took some pictures for him to include and I mailed it off to the Lego company.

Evan's letter to Lego

Translation of letter if you can't read 6 yr old handwriting: Dear LEGO Builders:

My name is Evan and I am 6 years old. I have severe hemophilia A. I have a port in my chest and it helps me get factor. Factor helps keep me alive by it helps me clot.

I would like it if I could have a peach Minifigure of me. There are no Minifigures with ports. To make a port you get the same small circle from the belly of the droid. You put it on the right top of the Minifigure chest and attach a flat peach stud. And a hair piece.

It would be cool to have a LEGO me with a port because it makes me think of me.

Thank you,

Evan

PS - Here are pictures for you.


It was about a week after I mailed his letter that I got the response in my email. And he was just so disappointed. He talked about it for a few days. And when I finally asked what bothered him most, he said that he just really wanted there to be something that had a port like him so that he didn't feel so different. That he always sees toys that look like everyone else, but none that look like him and that it makes him feel even more different.


Ok, so Lego responded. And I will say this- It wasn't rude. It wasn't mean. But it is just NOT how a company should respond to a little boy in what I would consider extenuating circumstances. He wasn't asking for free toys. He wasn't asking to be CEO of their company. He wasn't even really complaining. He wasn't SUING. In this litigious society, he wasn't threatening some kind of lawsuit and that is a positive! All the kid wants is a figure with what he considers a disability or something that makes him look different.

I've asked around- there are websites of people who take Lego pieces and make their own kind of figures. Apparently Evan knew how to make a port on a figure. Clearly if a six year old could give directions for how to make one, it wouldn't even be difficult to port one. Certainly easier and more pleasant than a small human child enduring the procedure of a real one. But from this letter, "Moira" didn't even know what a port is, she could've been talking about a prosthesis, or a bandaid. He's SIX. At the bottom of the email- they couldn't even send a snail mail letter on Lego letterhead or something, it asked him to complete an online survey to help them better assist their customers. Well, I'd bet good money, there are no specific questions about ports and Minifigures on that survey and I don't know many first graders able to complete online customer service surveys. Not to mention, I don't think they'd want the feedback after sending a form letter kind of email to a heartfelt plea of a child.

Lego's response:


Dear Evan, 


Thanks for getting in touch with us. We always enjoy hearing from enthusiastic fans and are so glad LEGO® products bring you joy

It's great to hear what you like. You sound like a very brave little boy and I bet your parents are very proud of you. There was a lot of thought put into the design of a special figure with a port just like you.  I am sorry but we are unable to make custom mini figures.We'll pass your comments on to our talented team of designers who will be thrilled to hear from such a huge LEGO fan.


It’s wonderful to know that you've had so much fun creating with LEGO bricks. As a LEGO builder, I'm sure you know that our huge selection of building and model sets offers unlimited possibilities. You can create almost anything your imagination dreams up!


Thanks again for getting in touch.  We're always pleased to receive feedback from LEGO fans!  If you could take a moment to complete a four question survey by going to the link below, it will help us make sure we are providing the best customer service to you.

LEGO Survey link
Please let us know if you need anything else.

Happy building!
 

Moira

LEGO Service
 
Basically Moira said he can build whatever he wants...the possibilities are endless, EXCEPT for your Minifigure with a port. Thanks Moira.
 
Look, Sara and I both understand that they can't just make Minifigures with every kind of physical affliction. And if they do one, they open themselves up to everyone having an issue, etc. But this is a KID company. THEY MAKE TOYS. SO what better an idea to really drive home that they care, than to take a kid's request a little more seriously in a matter like this. He didn't ask for hair pieces that are mohawks, or earrings, or some other superficial "look" to be rolled out. It's a PORT. It's something I'd have to assume most kids with them DON'T WANT. Hell, if it was chicken pox or measles Minifigure, we could just draw some red spots on them and call it a day. But those illnesses also end. Needing a port may not? I don't know. But Evan has been living with one long enough that he's bothered by it. So, as a company, I'd be like- Wow. Great idea. Wonder how we could do this. Even from just a good-feeling marketing standpoint, it's genius.
 
Evan is a huge Lego fan, spending a lot of time and money on their products. I just don't see how they don't spend a few extra minutes, either thinking about how they can do this, or at least sending a handwritten letter explaining why they can't do this particular Minifigure. It also wasn't like he was asking just for himself. He was asking for all kids with ports to have a Minifigure representative. I think that was pretty brilliant and caring of a six year old to think about what would make him happier about having to deal with a port and thinking it would make other kids feel better as well.

I'd also have to assume that no one on their "talented team of designers" has a port either. So Evan could've been their little port ambassador, helping them come up with the best way to keep it real. Lego- you missed the boat here. I kind of want to buy some Minifigures and other Lego parts for Ethan to try ourselves to make a ported Minifigure just in solidarity.

Evan wearing a Minifigure shirt of his own creation
 

Tuesday, October 8, 2013

Shop Till You Drop!

Coupon codes, invites, links galore! Use mine, shop and we both get credit!

Go to Ebates BEFORE buying anything online and get money back for the stuff you buy. Totally legit- I got $28 back last period- They give you your money every three months. I can't retire on it but it's better than nothing! From last year's holiday season shopping, I got back over $200!

Ebates:  http://www.ebates.com/rf.do?referrerid=M7ztafdzmV9Ni0Td2axGyQ%3D%3D

Mr Rebates: http://www.mrrebates.com?refid=932408

Amazon Mom: http://www.amazon.com/gp/mom/signup/info?ie=UTF8&refcust=M4Y3R2RZ6PVLMNFZE7R6A4TGEU&ref_type=generic

Groupon:  http://www.groupon.com//raf/UserReferral_rp/121015/10r1act/lk/uu6432160

ModCloth:  http://sharethelove.modcloth.com/a/clk/1QHtwN

Rue La La:  http://www.ruelala.com/invite/tsdk

Zulily:  http://www.zulily.com/invite/tsdk

One Kings Lane:  https://www.onekingslane.com/invite/taradiamond-kule

Tradesy: http://www.tradesy.com/invite/tara-d-1449746?utm_source=RFL&utm_content=RFL0001_1449746&utm_medium=link



Monday, October 7, 2013

The New Black?

Or the old black? Can't keep track. What am I talking about? Kabbalah. Jewish Mysticism. The two previous words are basically all I know about it. Well, that and what celebrities have been associated with it. Madonna's son ROCCO, yes, Rocco, just had his Bar Mitzvah, which I find fascinating since Madonna was raised so Catholic. Usually, people get nostalgic about their own upbringing, religion, religious traditions, etc when they have kids. I guess Madonna is just opposite in everything.

At any rate, it seemed to serve Ashton, Demi, Britney, Paris, Roseanne, and others well for a time or still. If you're interested it yourself here's where you can get some info:

Thursday, October 3, 2013

Upcoming Local Events

From Bergen Mama- http://bergenmama.com/article/bergen-events-not-to-miss-week-of-october-3rd

Check out their site- They're still around!

Events Not To Miss:

What: Cups or Cakes Grand Opening
Why: A Sweet Boutique featuring 21 fro-yo flavors, soft serve ice cream and a full bakery will launch with a Live DJ Party, balloon art, facepainters and free samples for the 1st hour.
When: Friday, Oct. 4th, 3pm to 6pm & Saturday, Oct. 5th, 1pm to 4pm
Where: 300 Ridge Rd., Mahwah

What: Closter Music Festival
Why: Tour Closter with a music and food festival.
When: Thursday, October 3rd (opening night) through Sunday, October 6th, check website for times.
Where: Various locations in Closter, check website for details. 

What: Jungle Jack Hanna: Into the Wild at Bergen PAC
Why: Live animals in Bergen.  Yup.
When: October 5th, 4pm, tickets start at $29
Where: Bergen PAC, Van Brundt Street, Englewood

What: Fabulous Fall Festival
Why: Games, Rides and More at this town classic.
When: Saturday, October 5th, 9am to 5pm
Where: Graydon Pool, Ridgewood

My opinion: Been to it- worth checking out.

What: Fresh & Fancy Farms Harvest Festival
Why: Think cider donuts, seasonal crafts, jam, facepainting, pumpkin painting and more!
When: Sunday, October 6th, 1pm to 4pm, FREE!
Where: 575 River Rd., New Milford

What: Glen Rock Street Fair
Why: Hit the streets for crafts, vendors, pony rides and a petting zoo.
When: Sunday, Oct. 6th, 11am to 4:30pm
Where: Rock Rd. & Maple Ave., Glen Rock

My opinion: OF COURSE it's worth checking out. Walk by my store too- Shades of Soho, between Gianella's Deli and Greek Taverna by the railroad tracks/CVS plaza. Our custom chandeliers are in the window. Can't miss us!

What: Hawks Over the Hudson
Why: Meet hawks, owls, eagles and falcons.
When: Sunday, October 6th, 12pm to 4pm, FREE!
Where: State Line Lookout, Palisades Parkway, Alpine

What: Jessica Seinfeld Book Signing at Chef Central
Why: Meet, Greet and Eat while picking up a copy of her new book “The Can’t Cook Book”
When: Tuesday, October 8th, 6:30pm
Where: Chef Central, 240 Rte 17 North

If you’re heading over the bridge.….

What: Harvestfest at Stone Barn Center
Why: A large scale harvestfest on the farm.  Grab casual fare, pick eggs and more. 
When: Saturday, October 5th, 10am to 3pm, rain or shine, click here for tickets
Where: 630 Bedford Rd., Pocantico Hills, NY

Upcoming:

What: 32nd Annual Oktoberfest Craftshow
Why: Canoe & Inflatable rides, food and handmade crafts
When: Saturday, October 12th, 10am to 5pm (rain date October 19th)
Where: Demarest Duck Pond, 243 County Rd., Demarest

What: Steen School Harvest Festival
Why: Sand art, pumpkin patch, bounce houses and pony rides!
When: Saturday, October 12th, 12pm to 6pm
Where: Olsen Park, 162 West Main Street, Bogota


What: Nyack Street Fair
Why: Featuring handcrafts, unique retail, antiques & collectibles at the Hudson River Town.
When: Sunday, October 13th, 10am to 5pm
Where: Main St. & Broadway, Nyack, NY

My opinion: We always go to this. Eat at Strawberry Place too on S. Broadway. If they have Gourmet Blend Balsamic showing at the fair, buy some. You won't regret it!

What: Haunted Forest at Tenafly Nature Center
Why: Live forest creatures (think wolves, flying squirrels and porcupines) a campfire and nosh.
When: Saturday & Sunday, October 19 & 20, tours depart every 15 minutes from 5 to 7:30 PM, $15, registration recommended
Where: Hudson Avenue, Tenafly

What: The Amazing Ridgewood Race
Why: A family that plays together, stays together. Try this treasure hunt throughout the town of Ridgewood.
When: Saturday, October 19th, 1pm to 4pm
Where: www.ridgewoodguild.com, Ridgewood

***Reading the Glen Rock Gazette, I saw another event***

Hawthorne Day- https://www.facebook.com/pages/Hawthorne-Day/138675992821196
Oct 5
Noon-8p

Wednesday, October 2, 2013

Actor's Technique

E has always liked to perform. I wasn't always working full-time like I am now and had time to take him into NYC for auditions. I did commercials and stuff like that as a kid because I lived in NYC until I was two and a half. There was a woman who had an agency in my building- All American Talent. She asked my mom if she could use me in something and that was that. I feel like it was a lot easier to get work in NYC back then. There were so many soaps, kids on Soaps, there were even kids on game shows like "Child's Play". I actually played John Quincy Adams as a baby in the first Adams Chronicles in 1974. We moved to NJ in 1977 and I guess that was the end of my budding acting career. Moving and my mom having more kids. You have to be able to drop everything and go to auditions when you're trying to be in the acting scene. With one kid, it's relatively easy. With two or three, not so much. And in Jersey? Well, it's not like living on 8th Avenue.

I had a friend whose children were working through an agency and she gave me their contact information when E was two years old. I took him there, they "accepted" him, and then they proceeded to be as good of an agent as Estelle on Friends. He got one small job but I could've gotten it myself through a casting website we're also signed up on.

He had a yearly contract with this agency and I knew it was up sometime in the spring. I wanted to see if I could get him new representation and with an agency that does more TV and movie work instead of just print. In May I took him to a very reputable agency for a meeting and they basically told me they liked his look but he needs to be more conversational. They asked him some questions and when he didn't know the answers he got kind of shy. What we didn't know is that he had the beginning of Fifth's Disease. For those who don't know, it's not as bad as it sounds, but you don't know you have it until the rash comes out. Once the rash comes out, it isn't contagious anymore. But his personality was a little off that day. They said to work with him and bring him back in two months. I was bummed because I really thought they'd be a good match.

Coincidentally, I got an email from Actors Technique NY started and owned by Todd Etelson. I'd known Todd Etelson peripherally. I'm not even sure how we started talking but it was like ten years ago or more. Since having a child, my memory is Swiss cheese. Todd is an actor in his own right, but I'm pretty sure actors are like lawyers, more that aren't working than are. Especially these days. I've read all over the place how Reality TV has knocked off a lot of scripted TV. There are less and less jobs for working actors. It's much easier to follow people around with a camera documenting their daily life than to write a show. It's also much cheaper when you're paying someone who isn't already famous or with a proven acting resume just to be themselves. Todd started this acting school at least ten years ago. I know it was before I met B, got engaged and got married. I'd never paid much attention because I wasn't trying to be an actor. I would get the emails, not open them and that would be that.

Then I went home after this Fifths Disease agency meeting with E to an email about a Tots improvisation class starting a six week session at ATNY. How perfect?! Six weeks is around two months and maybe he'd be ready to go back to the agency. It was $299 for the six weeks. That wasn't bad considering there are some Mommy & Me classes around for around the same price. Plus, Todd has no issue with helping people out with a payment plan. I've definitely encountered children's programs that basically said if you can't pay upfront you're out of luck. Todd also seems to know every kid that's in the program. There seem to be like a hundred kids, adults, parents, and who knows who else milling about, preparing for classes, auditions, preparing to teach, etc and Todd knows them all. I saw him switch a kid from one kind of a class to another because I guess he thought they needed some other direction more. He remembers everybody's name and their stories. I guess someone who has been on a Soap Opera (One Life To Live!) would be able to memorize well since Soaps have pretty much the most pages of dialogue of any type of show. It's nice to know you're not just a number representing $$$. I went to Barbizon- "Be a model or just look like one". Clearly I am no supermodel, so I know what being representative of money is all about.

There were anywhere from 4-8 kids in the class over the whole six weeks. It's a manageable class with a lot of personal attention. E was one of the youngest, if not the youngest at almost four and a half in his first session. I think the ages are pretty even in this session of maybe four kids. Tots is considered ages four through six years old. E was totally able to keep up in the class with the older kids though. He had two different teachers during that first session and was a HUGE fan of Alex. Alex has a British accent and to E, sounds like Harry Potter. Alex was really great with the little kids. We (the parents) didn't go into the class, which I like, because I find having parents watching distracts the kids and negatively influences their behavior. Maybe with older children it's fine but the younger ones can't handle it.

At the end of the semesters or sessions, ATNY invites industry professionals like agents into the last class. That's great because as the parent, it takes out the pain of trying to get appointments for an agency to see your kid and having to run into NYC numerous times if you don't live there. We don't live in the city and I can do without having to run in there during the week. Parents were invited in the last class of E's first session there but luckily, only one or two other children showed up that day- it was summer and people had a lot of commitments. The one or two other parents there, including me, all decided it would be better to conduct the class as usual, with the parents not coming into the class. I'd already warned E that there might be a mom in there because there was one I was afraid was going to go rogue stage mom. But it didn't happen. He knew I wouldn't be in there and was ok with it.

Industry people were brought in and we were told if there was interest in our child, we'd be contacted. I was disappointed I didn't hear anything. But there are no guarantees. There are no guarantees in show biz and the school doesn't make guarantees. Any school or agency that guarantees work is most likely a scam. But at least the right people are being brought in so I know he definitely has a chance.

Truthfully, I'm not even looking for E to be the next Macaulay Culkin. I think an improvisation class is just good for conversation life and people skills in a general sense. A help in being able to express himself properly. At four, he is very talkative and expressive. He can convey his thoughts and ideas pretty well. But there are definitely times he gets shy or reverts to baby talk out of the blue. Kids are so unpredictable to begin with. However, I do want to know he can converse with an adult if he had to- even if he got lost or needed some kind of help. A class like this will assist him with articulating what he needs to get out there.

Now that fall is here and school is in swing, it's the time to decide what activities your child will be involved in. Last year E took swim, yoga, and tap/ballet. I found swim to be ok, but if he isn't going to take a private lesson, he's not learning all that much just holding on to the wall with five other kids for only thirty minutes a class. It's a lot of work, for me, with little return for him. I don't have the money to get him private lessons because it's something you have to then keep up all year to remember and better the skills. He liked yoga but he gets to do yoga at school too. The only thing I have him in this year for sure is dance. So we threw in the improv class too. It's all along the same lines of performance.

People ask me if he likes it. He likes everything. If I tell him in an excited voice and demeanor that we're going to get water filters, he's happy to go get water filters. I go by what he seems to be learning. It could be just age- with little ones, even months seem to make a difference in maturity and articulation. But I think the classes over the last session definitely helped him express himself in conjunction with what B and I teach him as parents. The other day a friend of his was at the park with his mom and grandparents. The other child's mom introduced E to the grandparents. E put out his hand to shake and said "Nice to meet you". He wouldn't have done that last April. But after the class and some practice, I think he's gained a confidence in speaking to adults that he didn't have as much of prior. He was always confident and outgoing, but he's added another layer which I attribute to what he does in this classroom.

I also just like that it's different. It's not your typical extracurricular for four year olds. Or five or six year olds. Most of his friends are in soccer. Or basketball. Or some kind of sport. And that's fine. E can play eventually if he asks. I have no problem with it. But while he's so amenable and happy going to stuff that's a bit outside the box for boys, I'm all about it. I want him to be a well-rounded kid with interesting experiences and stories. He's a natural storyteller so we feel like we're just giving him something else to talk about.

ATNY has classes for Tots, Kids, Tweens, Teens and Adults. For a full schedule and information go to http://actorstechniqueny.com/. If you sign you or your child up- tell Todd I sent you because I get credit for it! Or if you have any questions, email me or post them here.

There are also other Actors Technique classes in other places for anyone not in the area. I believe there are classes in LA, Maryland, and CT. But you'll have to ask Todd.

Tuesday, October 1, 2013

I want to win!

I want to win for E. I SO want to take him to see Annie. He has LOVED that movie since he was two years old. Every time we go down to Long Branch in the summer he wants to "go to Annie's house!". For anyone that doesn't know, "Annie's house" or the Daddy Warbucks house, is actually a building on the Monmouth University campus.

This Back to School contest sponsored by Parent Guide News is giving away Broadway tickets or $200 to Staples. He could use either one!

You can vote once a day and we'd be so appreciative if you would!

http://www.parentguidenews.com/Voting/BacktoSchoolPhotoContest2013

It's under "Ethan K" and this is the photo:



There is also a birthday party contest I entered on there and I didn't know you have to vote for that too! There is no photo and it's under "Ethan K- Powerhouse Studios". Same rules- One vote per day, til Nov 1. I have to hustle- if I need to win a contest for tix or a birthday party, I'm all about it! Thanks for your help!

http://www.parentguidenews.com/Voting/BirthdayBlowoutJanuary2014.