Saturday, August 29, 2009

Guest Post!!!

I am so excited! Yet again, the staff of Kids of Courage never fails to amaze me. I asked Sara Miriam Kaplan, the head nurse on the Kids of Courage trip, to consider writing me a guest post. Within 24 hours, I had this masterpiece in my in box.

Thank you Sara Miriam! It's better than I ever expected.

Don't forget to go HERE to read more about Kids of Courage if you'd like.

And now, without further ado...I bring you Sara Miriam's guest post!

How do I even begin to write about what can only be described as a magical experience?

I am still on an incredible high from it all. I have been involved with Kids of Courage since its inception, a little over a year ago. This grass-roots, volunteer based organization was founded to, "Conquer Illness Through Adventure". We take children with a variety of chronic, serious, and life-limiting illnesses on adventure trips. Nuts. I know. But oh, what an experience.

Having worked as a pediatric critical care nurse for around ten years, I do not often have an opportunity to see children with serious problems enjoy themselves. This last year has changed all of that, and has changed my perception of illness and life.

I am privileged to work with an amazingly talented group of co-founders. Dr. Stuart Ditchek, M.D is a pediatrician in Brooklyn with a large number of seriously ill patients with complex medical problems. Howie Kafka is our chief paramedic, and a senior member of Hatzalah (RL-34). Ari Adlerstein is a law student.

Together with our boys head counselor and program director Ari Dobkin, and our girls head counselors Jeanne Franco and Elisheva Heyman, we have been fortunate to have a tremendous amount of help from The One Above in pulling together such an amazing trip in a ridiculously short amount of time. The decision was made to take the kids and young adults ranging in age from 6 to 26 to Orlando for a week of fun and adventure and give them the opportunity to experience things that other children their age are able to do on a regular basis. However, due to their physical challenges, our kids are often limited in their ability to do so.

From our fearless leaders, I have learned the power of not saying no, of giving every child a chance. Because of the sheer size and complexity of our group, a Continental Airlines jet was chartered from New York with 175 members of our group on it. In addition, there were flights from Chicago, Detroit, Toronto, Montreal, Houston, and Los Angeles. The scene in the airport was one of utter madness, but Continental did an amazing job in helping us pull it all together.

We arrived in Orlando and Landed on the tarmac, with the buses pulled up right next to the airplane, so the children and luggage could be loaded directly on them, without having to go through the entire airport. From that point on, it was non-stop action.

We had an amazing group of logistical staff who valiantly attempted to set up the infirmary. I really cannot begin to describe what it looked like. An incredible group of nurses (thanks Avigail, Ellen, Aline, and Ma!) complimented by Doctors (thanks Rich and Dr. D) and EMT/Medics (thanks Howie, Ranaan, Alex, and Matis) was privileged to care for the special kids and young adults.

A beautiful and uplifting Shabbos at the beginning of our trip allowed everyone to bond and enjoy each other's company. We journeyed through the Disney parks, Sea World, a Tampa Bay Rays game, along with many other phenomenal programs. There was always something planned, nobody was ever bored.

However, to me, as wonderful as all the activities were, it was learning the value of life that was the biggest lesson I took out from this. Our population is one that lives with daily challenges that as adults would just boggle our minds, but they pick up and persevere. They could be in FD crises one minute, get their Valium, and 20 minutes later be watching a show.

I have learned to look at the big picture, that we are all part of Hashem's world, and each kid is an incredible work of art. They may look different to some, but inside they are the same as every other child. Their daily routine is one of meds, doctors and hospitals, and for one week we were privileged to help them put that on the back burner.

We took a young man who is paralyzed and dependent on a ventilator on the Jurassic Park ride, with an 80 foot drop, at 50 miles an hour. Crazy. But as his mother told me when she saw the pictures, Kids of Courage treats her son like he is one of the gang.

I feel incredibly special to have been surrounded by Howie, Dr. D, and Ari who have inspired me and shown me that we can do it. Thank you for letting me be a part of it all.

Thursday, August 27, 2009

The Kid of Courage Returns

Well, he's back!

Benjie flew down to Orlando today and picked up Mr. D from the trip. For my new readers (hi guys!), you can read about the Kids of Courage trip here.

Amazingly, even with the yucky rainy weather here in Chicago (What the heck, by the way-ummm it's AUGUST-not October! This weather is making me want to go plant some mums. Note to self: buy mums for urns in front of house), all the flights went off without a hitch. Benjie only had about one hour between flights, and somehow he managed to get Dovi, check in, and get back on the plane without any craziness. He said that as he was going to security, he saw the INSANE Kids of Courage charter flight private security line. It literally took the charter flight over two hours to get everyone through security-luckily Benjie didn't choose that line-he had a flight to catch!

Dovi arrived with quite a bit of flair at home-he ran in the front door and was bowled over by Shana and Elisha-then I got the hug of a lifetime.

He's been telling us all about the trip-what he did, where he went..who he hung out with... Raphi, Dovi tells us that you have 10 girlfriends. Ahem. Hope you all had fun :)

I've never seen Dovi so contented. This trip was just magical for him. I need to go through his camera and pull out some pictures-unfortunately, in typical Dovi fashion, most of the pictures are either of his knees, Ezra's nose, or Raphi's hair. He's a real photographer, my Dovi. So all my readers (hi, girl counselor whose name Benjie forgot!) who went on the trip, want to email me some pictures to share here? Thanks lots.

Dovi's big ole bag of laundry is started, children are showered. Dovi's back to school tomorrow. Back to life...

Speaking of school, Rach asked me how school is going for me. I've come to a conclusion. I'm a nerd. A big old nerd. Is it pathetic that I am actually enjoying school? I'm sure that my feelings will change, hey, when I'm insanely cramming for my biology final, but I seem to be enjoying myself just a tad. And good news-my biology class does not seem to include dissection. Phew.

As soon as I get pictures from the trip, I'll be sure to share them all with you.

Tuesday, August 25, 2009


Kids come up with funny things. It's a fact. They make up goofy little sayings and have funny quirks.

Elisha Meir is no exception. Elisha loves legos (and the Cubs, and any type of candy, and Wii, and Webkinz). Many kids love legos. Kids build all types of creative, fanciful structures with legos.

Elisha builds one (well I suppose two) things:

Slufty Houses.

(pause for confused re-reading of what I just wrote)


Elisha builds Slufty Houses, and the Slufties to go in them.

What are Slufties?

Don't you know? Doesn't everyone know?

Why, Slufties are small snails made out of lego.

And they live in little small lego boxes, with lego lids, made with lego love by Elisha.

Sometimes he even puts in Slufty Food.

We have little Slufty Houses scattered throughout our house. I've found them in my room, on Elisha's bookcase, on my little niche on my staircase, on the occasional table in the living room, and all over the Zen Den.

No, I have not a clue where he came up with this.

When the Dovi's Away...

ESJ do play.

We take Dovi everywhere with us. We really do (well with the exception of the day of heat and line hell at Great America a few weeks ago). But the thing is with the D is that he gets hot. And overheats. And has to go to therapy. And has his big wheelchair stroller thingy. So going places with Dovi is a production. One that I willingly, lovingly engage in. No judgements, folks, just a statement of fact. Dovamatic makes everything take longer and be more of a production.

And another statement of fact: I'm sitting on my couch blogging while my awesome hot helpful hubby is unloading and reloading the milchig (dairy) dishwasher. You're all jealous. You know you are.

So when Dovi is away, I try as hard as I can to take the kids places that are harder for me with Dovi. So while Dovi is partying in Orlando (so far it's been Universal Studios, Tampa Bay Rays game, Nickelodean Water Park, and a pirates dinner show), ESJ are partying in Chicago.

Sunday night we hit Navy Pier with our cousins.

We had dinner and were robbed senseless by the insane prices to ride the Navy Pier rides took the kids on a few rides.

Correction: I was my delicious nephew Naphtali's

nanny while everyone else rode the ferris wheel.
Heights are not for me. I feel nervous and nauseous just looking at pictures of heights.

Then they "rode" the Lighthouse.
I think it's more cute that they filled up the ride than anything else. It was a little silly-but of course they loved it.

Then they went on the marry-go-round.

The kids did that. My brother in law David? He rode the vomit swings. Luckily he did not vomit. Another person who rode said ride was not as lucky.

He's the white shirt-can you see him???

The cute kids did cute things.

Then Nava got tired. And laid down on the floor of Navy Pier.
So we left. The girls danced in the parking lot.

And we went home. At 9 pm. Which for my kids is insanely late. Be proud of me. I'm getting more flexible in my old age.

Monday was a new day of fun for the troublesome trio.

We went to Brookfield Zoo. In order to get my family in for free I married Shosh and she adopted my kids and the F-P family enjoyed a day of fun at the zoo.


Stuck our heads through picture holes.
Fell out of picture holes (thank you Elisha the Clown)

Watered plants in the play zoo (yes, Shana's wearing a cover-up for a dress. She wanted to. I didn't want to fight. Go with it)

Elisha tried to teach T how to shpritz. She wasn't interested in his affections. Personally, I think he was only interested in her fluffy hair. He likes fluffy things. He told me on Shabbos afternoon to please, call him Fluffy, not Fishy. I have obliged him quite happily.

Then we pet a guinea pig

my kids looked at me with pleading eyes. But I remained strong. I do not like rodents.

Then they made outdoor collages.
If this picture of Shana doesn't meet the definition of "sun dappled" I don't know what does.

Look how organized Jakie's collage is! A boy after my own heart.

Elisha's collage has a hat.

We found a bear in a swimming pool.

Took the required picture on the lion:

And went home, sunburned and happy.

Then we had the most amazing, favorite dinner EVER.


Little stinkers. I make all these lovely dinners. What's their favorite?

plain pasta with tomato sauce and Parmesan cheese.


Next up?

Maybe the pool.

After I come home from school.

Yes, my first day of school is upon us.

May G-d have mercy.

Monday, August 24, 2009

Kids of Courage!!!!!

Hi everyone who is coming over here from the Kids of Courage site! I feel so special? honored? overwhelmed? that KOC decided to put my little ole blog in the "press and letters" section. So I figure that if you're here, you might as well know a tad about who I am and what this little ole blog is all about. I started this blog about two years ago, originally for my immediate family. Unfortunately, we live far from much of my family, and they were all getting irritated at me for not sharing all of Dovi's medical stuff on a regular basis. Dovi, now age 11, has FD (Familial Dysautonomia). You can read more about him here. We've had quite the bumpy ride with Dovi. But if you're here from the KOC website, in all probability you either (a) have a kid with FD or another nasty illness, (b) love or care for a kid with FD or another nasty illness, (c) are a counselor for a kid with FD or another nasty illness. So you know where I'm coming from. Back to my blog. So I started the blog about Dovi. It quickly grew to a rather identity-challenged blog, as I write about all things that interest me-my family, Dovi stuff, couponing, home decor, and other random stuff.


Also, click over here to read an amazing guest post that I am honored to publish from Sara Miriam Kaplan, the head nurse from KOC.

Now...on to my original blog post.

Thursday went well. Flew down with the boy. Waited with him for the Kids of Courage people. Left him with them. Flew home. Was tired.

I didn't realize there were soooo many kids going on the trip-there are 89 Kids of Courage! It must be total, utter madness.

As a matter of fact, it IS total, utter madness and mayham.

The Kids of Courage website is awesome-they put up pictures every day-which unfortunately I cannot share with all of you because you have to be a parent to log in.

But since I can't share the pictures with you, I'll share the two news reports that aired about the trip.

Click HERE

and HERE

I cannot even begin to envision the insanity that must have been that chartered flight. I wish Dovi could have been on it-oh well, instead we got out lovely flight from Chicago.

Friday was Sea World, yesterday was a Tampa Bay Rays game, and today is the Magic Kingdom. Not sure what's happening after that.

It's a rough life being Dovi, that's all I have to say.

Wednesday, August 19, 2009

Disney, Baby!!

Dovi and I are OFF!

I'm flying to-and from-Orlando tomorrow...dropping the D man off with Raphi (Dovi's counselor/my new Bio tutor) for his Kids of Courage Disney trip...

It's going to be a LONG day tomorrow.

But it's worth it for Dovalicious.

So you want to come and visit?

Come on in!

You might recall what the den looked like before.

It was red.

It was intense.

It felt very dark.

I decided that my life is intense enough-and my kids are {ahem} a little....intense?

So it was time to create the "Zen Den"-a relaxing room that encouraged everyone to relax and put their feet up.

So come on in!

Before, as you entered the room from the dining room:

Now. Can we all let out a collective...ahhhh.....please?

Fireplace wall before:

Fireplace wall now:

You all might recall my dilemma with the funky windows in the room. Someone suggested to extend the curtains from the fireplace wall all the way around the tall windows. So I did.

Wall where the couch was:

What is there now:

Where the entertainment center was:

What's there now:

The crap toy closet/desk wall then:


For those who are interested, let's talk design:

First of all, the light is soooo bad in these pictures. But if I wait until tonight to take new pictures, this post will never happen.

The color is Monroe Bisque. For whatever reason, the color came out a lot more gray than I anticipated. My friend who has the same color in her house agrees. Not sure if it was mixed wrong or what, but it's a lot more gray-ish than tan-ish. And Benjie says he will NEVER paint again. This room has been three colors in seven years. So Monroe Gray-ish Bisque it will remain.

I'm still undecided about the fireplace. I still kind of want to paint it white. Benjie does. not. want. me. to paint. the. fireplace. He mentioned maybe painting the wood mantle instead. Opinions? I still have dreams of enclosing the Hearth of Death and tiling it but am afraid/have not a clue how to do it.

The curtains are drop cloth curtains. I'm considering adding some trim to them, but not sure if it will be too much. I started out with upholstery tacks ala Nester, but maybe I'm a spaz because they looked sooooo bad. So I picked up new rods in a bushed bronze color at Target-really skinny with a small finial at each end, mounted butted up to each other in the corners. I love them-and they were only $4-6 each!

I got bamboo shades for the two large windows. Still considering matching ones for the three small windows-but am not sure.

Opinions on the large paper lamp thingy in the corner? I'm thinking it's too modern-it only cost $20 at Ikea so it's no biggie if it didn't.

LOVING my new sisel-esque rug from Home Depot. Only wish that it was a tad bigger.

Do you all notice my awesome new little chair from Ikea? I love it!!! I wanted a small chair and my mom and I found the perfect one at Ikea. And it was cheap!

Let's look again at the top of my entertainment center. Not loving it. It needs more. It's such a big area that I'm afraid it will get too full. Help!

I need something BIG to go up there-but what???

Also, the corner by the new chair needs some lighting. I have a petite 3 arm white chandelier that I could hang there. (you can see it sitting on the Hearth of Death in the closeup of the fireplace) Thoughts?

I also moved my photos what were above the fireplace to over my couch. But I think they are too high. I need to move them down about six inches, right?

By the way-every accessory came from inside my own home! I just gathered all my white and cream accessories and grouped them in my den. I'm very happy with it!

I hope you all have enjoyed the bad lighting tour of my new Zen Den!

Tuesday, August 18, 2009

The Best Day of My Whole Life...

So. Last week Elisha, Shana, and Jakie turned seven. Madness I say, madness. Elisha and Jakie got new bikes.






an American Girl Doll

My mom and I took the little Miss on Sunday afternoon. Her eyes literally bugged out of her head when we got there. Hers and the eyes of all 8 million hyped up little girls who were there. We browsed around a little, and then she found the object of her affections:

The "Just Like Me" doll. As you can tell, she was very, very excited.

Then it was time for a few accessories.

She looked around a little.

And found the first item she thought she wanted:

So first we carried it around a little.

Then she found a pair of jammies and a pair of clogs for the doll that she liked better. But I forgot to take a picture of it. Oops.

Then she hugged my mom and said thank you.

We stood in line to pay.

We got our bag that is as big as Shana is.

We took a picture by the big star.

Then we went home.

On the way home:

Me" "Shana, was this everything you ever dreamed of?"

Shana "Mommy, this was the best day of my entire life"

So I suppose it was worth it.

Monday, August 17, 2009

I Know, I Know

I haven't posted since last Wednesday.

First of all, thank you all for your incredible support and warm wishes for my schooling plans. I'm a tiny bit nervous but am confident that I'm making the right choice.


Why haven't I posted in four days?

Well, my Mom is here visiting. And we've been busy. Very busy. So busy that my mom fell asleep for the night last night at 8pm. I think we're wearing her out.

I promise, I promise. I have much to post - including Shana's birthday gift ("It was the best day in my whole life, Mommy" - Shana P, 3:30pm Sunday afternoon), the den - remember how I posted the link to my den problems?, the boys' birthday gifts, and some more goodies.

So have patience, my dears. I'll make it worth your while.

Wednesday, August 12, 2009

So It Shall Be Written

So it shall be done.

I haven't blogged about this yet because I didn't want to talk about it until I actually committed.

But I did.

So I will blog about it.

I'm going back to school. Yes, I have a bachelor's degree. Yes, from a REAL college (Loyola). Yes, I've been out of school for seven years.

I have registered for my classes. I have committed/

My degree is in business (if you must know, I have a Bachelors of Business Administration with a Concentration in Information System and Operations Management). I finished my last class in December 2001. It took me so long to finish school because I took off two years when Dovi was born.

I've decided that if I have to sit behind a desk for the rest of my life I'll have a nervous breakdown.

So I'm going back.

I'm becoming a nurse. Well, I'm trying to become a nurse. First I need to take my science prerequisites that I'm missing and then I need to get into the program. I'm not overly concerned about getting in-it's a points system based on grades, and frankly, I'm a good student. I'm the girl in the front row, taking copious notes and reading ahead in the book. I'm the one who people borrow notes from. I'm annoying and compulsive about school. But hopefully that will serve me well in school.

The degree I'm hoping to get will be a two year associates degree in nursing and I'll take the registered nurse test. So in theory in three years I will be an RN. In theory. Hopefully. If all goes as planned.

Yikes. I'm feeling nervous. School? Huh? Sit in a classroom? Dissect a fetal pig? (OMG I have not a darned clue how I'll survive that!) I'm taking Chemistry and Biology. In the spring I'll take Anatomy. Oy.

Wish me luck!

On a side note, the fearsome threesome is seven years old today.

I cannot cope. HOW ARE THEY SO OLD? How are my babies SEVEN? What is that all about?

We took donuts to camp. I got yelled at by the Dunkin' Donuts man for ordering three dozen donuts in the drive thru. Umm it's not my fault that they don't understand English there and they couldn't comprehend that I wanted three dozen donuts, packaged 12, 12, 6, and 6. "Three dozen donuts, please. Please put them as 12,12, 6, and 6." Pretty clear, right? Then again maybe not.

Tonight we're taking them out to dinner to celebrate (we're having a debate about dinner. Shana wants to go to Main Pizza. Elisha is unsure, and Jakie wants Kens. Mommy wants Kens too so we'll see who wins this one). Dovi isn't coming because he is going to the Cubs game. And sitting in the first row. Dovi is such a scammer-how does he pull these things off? Everyone wants to take him to games!

And poor, long suffering, paint hating Benjie and I painted the den last night.

Step one of Operation Zen Den is underway. Pictures to come-my mom is coming in town tonight and we're going accessory shopping tomorrow. Yay!