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george michael

Prader Willi Syndrome

What Do You Do When You Buy 2 Nights at a 5 Star Hotel in Paris By Accident?

May 1, 2012

What do you do?

Have Faith.

You gotta have it.

So says George, at least.

On Saturday I went to a gala for Prader Willi Angels. My nephew has Prader Willi Syndrome, a rare genetic disorder and I pretty much love him more than anyone on the planet, so I thought I would go.

My awesome nephew and buddy Blaise who has Prader Willi Syndrome

Tickets were $150 and all money raised would go toward research. 

I was down.

Plus, I had never been to a proper gala so I was excited.

I’d get to change out of my Lululemon gear? Sweet!

So I get kind of dressed up.

My friend decides to join which I think is amazing because it is $150 after all and that’s not chump change for most. I pick her up and we look super cute together except for the fact that she is about 6 feet tall and I am closer to 5 feet so I look like a Smurf. Otherwise, totally cute. It’s even being at the Jonathan Beach Club in Santa Monica.

Swanky.

My awesome friend Elizabeth aka Cherry who came out to support Prader Willi

First mistake: I get a vodka and soda with my drink ticket. (Yes, I teach yoga. So?)

I should have known when the bartender says, ” Heavy on the vodka? Easy on the soda?”

I thought she was kidding.

She was not kidding.

So, it’s my first gala and all and I don’t really know what the proper etiquette for a gala is  (I mean, what is a gala anyway?) I start looking at the stuff being bid for the silent auction. With my vodka soda in tow.

I ask ” All the money goes towards research, right?”

Answer: Yes.

Second Mistake: I put my sticker 395 down under $30 for a Brazilian blowout in Sherman Oaks which I will probably never use because the valley is like going to New York when you live in Santa Monica.

But hey. It’s for charity.

(Yes, I won it.)

Then I see it: French Kiss it says. Luringly. (This is really the 2nd Mistake but by putting my sticker down on the first thing I got myself in trouble. Downhill from that there Brazilian blowout in the Valley.)

What’s this? I ask as I sip my drink.

Well, well, well.

It’s a 5 star (yes, 5 star) hotel in Paris.

Le Bristol.

A 2 night stay worth $3,500 dollars. (My eyes caught fire when I read that.)

So I took another sip to cool down.

I was going to be in Paris in July after my Italy yoga retreat! Ding ding ding.

3rd Mistake: Yes. I did it. I put my sticker down. Number 395. Lucky Number 395, that is.

A woman was lurking. She wanted the Paris hotel too.

It made me want it more.

(Side note: they had swiped my emergency American Express card when I walked in just in case I bid on anything and won.)

I wanted it now more because this woman wanted it. (I’m telling you, I really am quite yogic. I am not sure what got into me.)

Oh yea, a vodka soda and a little healthy competition.

4th Mistake: She walked away and I put my sticker down. Again.

The auction ended.

Yes, dear reader, you guessed it.

I won.

Ok Jen, I told myself (out loud) You may not have this money. This may be on a card your husband got you for an emergency but it all goes to research and it’s worth $3,500 so really you got quite a deal at $1,560 dollars for 2 nights in Paris. I mean, it’s a steal. It’s like for free!

Jokes aside, I panicked a bit. I really did not have that money to spend but I knew it all went to charity so I just breathed. Loud and hard. But I breathed.

I took a picture of the gift certificate I won to show the Peanut Gallery (aka my husband and mom.)

5th mistake: I take a picture of said certificate and leave it at the flipping Jonathan Club.

I get home and I realize it is gone so I put on flip flops and drive back and march back in and dig in trash cans.

Nope. Nothing.

(You have to just pause and laugh here because it is too funny.)

I immediately email the hotel ( I had taken a picture of the certificate so I knew the email) and I cc’d the girl who ran the gala. I would have to be able to get a new certificate.

Right? Somebody please tell me Right!

So here is where faith enters:

It is okay that I spent that kind of money. My first instinct after I did it was to say “Who am I to spend that kind of money? I am just Jen.”

Screw that tape! I am Jen! I am Jen and I deserve this.

Also, the money will come back to me. It always does. Always.

I also have faith that this ridiculous amount of money I spent for 2 nights at a hotel will help find a cure for my best buddy Blaise.

I also have faith that it will all be worked out and they will be able to easily get me a new certificate so I can indeed book those ridiculously expensive two nights.

I have a vision and I hold it in my heart.

This vision is:

Me hanging out at this Parisian hotel and writing my book. 

My nephew and all the other PWS angels never having a hunger pang again.

Money never ever ever being an issue for me.

I have faith in these visions.

In the meantime, check out this hotel. And keep me away from galas, vodka, silent auctions and Brazilian blowouts.

Just a bit of info on PWS: Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as a common genetic cause of childhood obesity.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they had examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia at birth, insatiable hunger, extreme obesity and intellectual disability.

Please please please vote daily on this video to help get PWS to the White House so we can eliminate these challenges once and for all.
Here it is.
It will make all the difference in the world.

Renay Compere, far left, owns Pop Physique in Santa Monica where I host my workshops and has a son with PWS

Daily Manifestation Challenge

The DMC: Daily Manifestation Challenge. FAITH.

October 13, 2011

Ah, Faith.

You gotta have it.

 

 

I cheated on my fears, broke up with my doubts, got engaged to my faith and now I’m marrying my dreams.

Today’s Daily Manifestation Challenge is about Faith. I actually asked a friend who is going through a hard time what my challenge should be today. In particular, her baby boy is dying from Tay-Sachs Disease.

She gave me a list.

I will slowly work through the list. Day by day. As she does.

So she is struggling with Faith.

I get it. I struggle with it a lot too.

Wikipedia says:

Faith is trust, hope and belief in the goodness, trustworthiness or reliability of a person, concept or entity. It can also refer to beliefs that are not based on proof (e.g. faith that a child will grow up to be a good person) . Religious faith is a belief in a transcendent reality, a religious teacher, a set of teachings or a Supreme Being. Generally speaking, it is offered as a means by which the truth of the proposition, “things will turn out well in the end,” can be enjoyed in the present and secured in the future. The concept of faith is a broad one: at its most general ‘faith’ means much the same as ‘trust’.

I get it: how can she trust in the Universe when her baby is being taken away from her? How could one ever have faith in anything again after that?

It’s a tough one. But the alternative is grim. If you lose faith or hope or trust or whatever word most aptly describes ‘faith’ to you, it becomes a slippery slope.

A slippery slope until you become simply a shadow of who you once were.

Take a look at your life and where faith plays a part. When do you experience faith or a lack thereof? For me, I feel faith in myself when I can clearly see that something I have said or done has helped someone have a breakthrough in their life in some small way or when one of the kids I teach yoga to with special needs learns how to Om. I feel faith in myself when I realize that I have found my bliss and the world is conspiring in my favor. I have faith in my nephew Blaise who struggles with Prader Willi Syndrome when I see how many strides he is making daily. The list goes on.

I used to think God hated me.

I decided that at a young age because a few things happened in my life that I could not comprehend. I did not understand what having faith meant for a long time. I had faith at a young age it and what good did it do? My dad still died at age 38.

I realize now that faith is renewable. At any given moment I can restore it.

I have found things that allow me to experience faith and I revel in what that feels like. I trust in things again. I allow myself to believe. Not just in myself but in human nature and kindness and love and all things that I once had lost faith in.

It is not always easy.

 

         To one who has faith, no explanation is necessary. To one without faith, no explanation is possible.
         St Thomas Aquinas quotes 

Faith and trust , in my universe, are much the same. At the moment, I am out of words to offer my dear friend Emily who is losing her baby. I do, however, have faith in her talent and humor and kindness and beauty and courage. I have faith that her book will sell and help many others who are experiencing similar grief.

Today’s Daily Challenge: You Gotta Have Faith!

In the Comment Section Below write where you have faith in your life or where you are lacking it. Where you may be struggling with faith. Or simply what Faith means to you. Can you renew your sense of faith in yourself? In love? In your career? In the Universe? In wherever it may be that you are lacking it? Can you offer someone else some glimpses into faith, someone who may be struggling? It’s not always easy, these daily Manifestation challenges. But they will get you to take a look at your life, and, if it’s applicable, make a shift or two.

Are you ready?

  
Be faithful in small things because it is in them that your strength lies.
Mother Teresa 

 

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