Birthday Gratitude

"Made in 1975: Forty Years of Awesome"
The PERFECT Gift From My Friend Emily

The last week and a half has been a whirlwind of birthday blessings. I cannot imagine beginning a new decade feeling more loved than I have these past several days.

Until the dust settles, I catch my breath, I finish my fundraising and I wrap up Dysautonomia Awareness Month blogging, I fear my thank you texts, emails and notes will be a bit delayed.

I Wore My Crown Everywhere I Went Over My Birthday Weekend!

I want to take a moment to say here on my blog: THANK YOU from the very bottom of my heart for all of you who showered me with such love and support on my 40th birthday.

Thank you for the voicemails, the birthday serenades, the texts, the Facebook messages, the flowers, the snail mail cards (so many beautiful cards and notes), the meaningful gifts, and the tremendous show of support for my fundraiser celebrating my improved health and Dr. Rowe. 

My cup runneth over. 

It's Amazing How Few People Noticed It! Haha!

40 truly does feel fabulous, fantastic and magical. I never imagined the health I'm experiencing now, and I am continuously humbled and amazed by the support system and love that surrounds me.

Healing. Love. Peace. Joy.

I feel them all. 

Thank you to each of you for being a part of my life, for embracing my journey, for loving me, and for helping me to celebrate this milestone birthday. This life wouldn't be the beautiful life that it is without YOU in it. 

Blessings,

Emily

Goals: What I Want My Blog to Look Like

Stream at a Favorite Local Park

I've been mixing up the posts on my blog this month, trying to encompass a variety of topics and blog more frequently. 

I'd like to use Dysuatonomia Awareness Month and my birthday month in the following ways:

1. To continue working to raise money for Dr. Rowe/Dr. ANS. You can find the link to my fundraising page HERE. Thank you SO much to everyone who has donated so far. I'm overcome with gratitude at the success of the campaign so far and excited to watch the momentum continue.

2. To elaborate more on what is working for me treatment-wise, what new discoveries we have made over the past three years, and to share more about my team (headed by my point guard, Dr. Rowe).

3. To use Dysautonomia Awareness Month as a time to share some general, but powerful, facts about dysautonomia and related illnesses, especially Chronic Fatigue Syndrome. I'll also be sharing specific facts about the Chronic Fatigue Clinic/Dr. Rowe's Clinic at Hopkins, so that folks can have a better understanding of how his clinic works and why I am so passionate about helping his clinic in particular. I'll try to do this in short posts. Some of the information is new even to me.

4. To share some of the events of the past year that I've enjoyed with my new freedoms and health in celebration of healing, Dr. Rowe and life. I've often not blogged about big things because I was busy enjoying new experiences, but I'd like to share with many of you what's been keeping me busy!

I'd like to see the goals for this month trickle into the future as I try to make blogging and writing a greater priority. I need to write. As in, I need to write to survive. I've let my blog go in place of new adventures, but I'd like to balance things out a bit as we enter into the Fall and Winter months. 

Be a dancing light,

Emily

Monday Dog Blog: Deely Boppers To Celebrate Mommy

Kissing!

As far as we're concerned, Mommy's birthday celebrating has gone a step too far around here.

Hmmmm,What ARE These Things Mommy Put On You?!

Do you see what she made us do?! She made us wear these ridiculous deely boppers just like the girls at her party!

We Look Ridiculous, Right?

Mommy has had a wonderful week of celebrating and she's pretty worn out. But, boy oh boy, did she ever feel loved and spoiled and full of life!

We're happy to see her begin a new decade with so much more health, vitality and life in her.

In the spirit of our love for Mommy and her joy, we decided we'd wear these goofy things on our heads just for her. After all, she does give us really, really special treats, snuggles and all things good.

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Another Year of Wynton!

With Carlos Henriquez

Here I am with Carlos Henriquez, the man Wynton Marsalis calls the future of jazz. At 36 years of age Mr. Henriquez is remarkable, and I had the privilege of meeting him in the lobby after the performance, getting his autograph, having a photo op, and having him teach me how to count 13/8 time. :) 

This is the third time in the past seven years that we have been able to see Jazz at Lincoln Center with Wynton Marsalis perform here locally. As I've said in previous years, it's a concert that always leaves one 'joyous and bouncing like a chicken.'

Mom and Me

On the way home from the concert, I blurted out to Mom and Kiernan:

I just sat up for a concert for over two hours, had energy afterwards to wait in line to get an autograph from Carlos, was able to fully enjoy the concert without pain, sweating, forceful heartbeats, the need to put my feet up or the urge to lie down. I was able to dress up, wear make-up, style my hair, put on jewelry and paint my nails in the afternoon before my nap. I could fully and completely enjoy the concert without thinking about my symptoms or worrying about being able to sit up.

Oh. The. Joy.

It humbles me.

Kiernan and Me

I love that two of Wynton's concerts have been timed right around my birthday--my 33rd and my 40th. What a change my life has made since that first concert outing.

My 33rd birthday was the year I met Miss Lisa Extraordinaire, who changed my life by showing me that she would make it possible, no matter what it took, for me to be able to see live music again. As much as I enjoyed that concert and as happy as I was to be there, every minute of it was a physical struggle. 

Me and Carlos!

For those of you who are just joining me on my journey her at Dancing Light's Studio, here are some links to earlier posts about what it took for me to be able to go to a concert, how much courage it took me to make it to the first concert, how Lisa changed my life, and how different it was for me to go to a concert.

My first concert outing in a decade, meeting Wynton, meeting Lisa and turning 33:

Part I: Birthday Surprises: Meeting Wynton Marsalis

Part II: Meeting Wynton

Part III: Dayeinu: More Me and Wynton

My second concert outing to see Wynton AND meeting him AGAIN!

Joyous and Bouncing Like a Chicken

A Little More Wynton

These posts are powerful reminders for me of my journey.

The Concert-Goers

Being able to sit up close, rather in the very back row where the handicapped seating is, made the concert more remarkable. I am so excited to see more performances sitting in 'regular' seats! I still get nervous before a bit outing like this in terms of hoping I will be having a 'good' day, and that the sitting up won't be a struggle. I have to be very careful in pacing myself before and after the concert.

Going to a concert is still not something I do in the same way a healthy person would, but I can do it!

Chatting with Carlos

I think that Lisa may have wanted to make it possible for me to meet Wynton again this time. Instead, I saw her get to take a very young boy back to meet Wynton. As I watched the little boy go back to meet Wynton, I smiled and hoped he'd have the same magical experience I did twice before. 

Sure, I'd love to have seen Wynton again. But you know what? It wasn't a big deal either way. I delighted in meeting Carlos, as I think his talent as a bass player is mesmerizing. He has been performing with the group since I first saw them in 2008 (when he was only 29!), and I can't wait to see the things he will continue to do with his life. Everyone in the orchestra is truly amazing.

I've had my turn. And I had my turn meeting Wynton when I really really really needed something special to happen in my life, when I needed to be reminded of the goodness and joys in the world. Lisa found a way to make my world brighter when I needed it most.

As I said in the first series of Wynton posts, I thought again last night about the word Dayeinu.  

Had I been able to sit up in real seats, it would have been enough.

Had I been able to sit up without pain or other ANS symptoms, it would have been enough.

Had I been able to wear my new dress, it would have been enough.

Had I been able to meet Carlos, it would have been enough.

The concert was more than enough. Meeting Carlos was icing on the cake. I did write a card to Wynton (with a photo of the two of us from my last visit) and gave it to Carlos, so hopefully Wynton got it!

The only sad part about last night was that I never got to HUG Miss Lisa! I only saw her from a distance and blew kisses to her. :( 

 Autographed Live in Cuba CD 

My autographed CDs are precious reminders of each step of this journey through illness.

I'm joyous and bouncing like a chicken over my newest concert experience and seeing Wynton and his orchestra again!

Be a dancing light,

Emily

The Big 4-0: Cake and Champagne

Cake and Champagne With The Girls!
Back Row: Laura, Rebekah, Me, Danielle, Megan, Barb
Front Row: Sarah, Marjie, Marcy, Andrea, Jennifer

On Saturday night, I celebrated my big 4-0 with a group of my favorite girls. 

The theme: Cake and Champagne.

And lots and lots of '80's memories.

Come join in the fun through pictures!

I got a new dress at Arts Fest this year and have been saving to wear as much as I can this month! 

Mom and I spent much of Friday baking two gluten-free cakes: a chocolate cake with coffee icing (from the America's Test Kitchen How Can It Be Gluten-Free Cookbook). It was seriously good!

And an Almond Cake from The Complete Low FODMAP Diet.

I wanted the party to be a great combination of celebrating the milestone that is turning 40 and a blast from the past of parties I had growing up.

That meant goody bags,

noise makers,

deely boppers,

and lots of 80's memorabilia!

Remember landlines?

Marjie had important calls to make!

The advantage/disadvantage of living in the same house for my whole life means I have lots of stuff from my childhood. 

A first edition cabbage doll from my grandmother,

sticker books,

Major Morgan,

mix tapes, VHS tapes, a little Whitney Houston and even some Kenny G!

Twister,

Super Soakers,

 a Cornsilk Cabbage Patch doll,

and a boombox (which I still use!).

For admittance to the party, no IDs were required but a photo of oneself from the 80's was required.

Yes, this one is of me.

And since I still went by 'Erin' in the 80's, we used some Post-It Notes copyrighted 1989 to number our pics on the wall.

A party in the 80's wouldn't be a party without a game, right? 

So, everyone had to try to guess which childhood photo matched each adult at the party. 

The prize? Chocolate!

(I offered Kenny G's Silhouette, but no one took me up on it.)

To bring myself into this decade, I dressed in a party dress newly purchased over the summer.

I paired it with my prom shoes to add a retro touch. :)

Kiernan took me party shopping, and I went crazy for the 'Fierce, Fabulous and Forty' collection. 

Pink? Yes!

Polka dots? Yes!

Forty and fabulous? Yes!

With all of that organized, it was time to PARTY!

I was joined by my favorite girls, including Marjie  (only a couple couldn't make it and they were missed a LOT).

Kate, my 'oldest' friend in attendance (friends since 7th grade), even made it up from Baltimore,

and stayed until 1 AM talking!

Marcy and Laura helped pop the champagne.

I supervised!

We had plenty of wine, too.

Kate brought her photo album of our senior year of high school (think prom, graduation, girls on a camping trip, and marching band).

Anne (a friend in town visiting Andrea), Andrea, Rebekah, Marcy

Barb, Megan, Jennifer

Laura, Marjie and Danielle took a selfie with a 'real' camera. 

Sarah couldn't make it in from out of town, so she sent this gorgeous Edible Arrangement with balloons, which was a huge hit! We missed you, girl.

Once the champagne was popped, it was time to light the candles and eat some cake!

Kate rocked the party when it came to making things happen.

Everyone else helped so much, too, with serving and cleaning up!

Everyone sang a wonderful rendition of Happy Birthday,

we toasted with champagne,

and I made the best wishes I could think of!

Then, Sarah, Barb and Rebekah took charge of serving! Thank you, girls!

The cakes were delicious. I had them both as dinner last night and again as my lunch today! I added rainbow sprinkles to everyone's frozen yogurt because who didn't eat those in the 80's too?!

Wearing Our Deely Boppers!
Back Row: Laura, Rebekah, Me, Danielle, Megan, Barb
Front Row: Sarah, Marjie, Marcy, Andrea, Kate, Jennifer

It felt INCREDIBLE to be surrounded by some of my very favorite girls and celebrate LIFE. I felt so fully alive on Saturday night. 

Girls I've known since childhood (Kate) to those I've just met this year joined me, and every single one of them I cherish and am so grateful to have in my life. In a testament to how much I love our neighborhood, I realized that six of the girls are my neighbors too!

I loved planning for the party, shopping for the party, setting up an 80's Pandora station, making goody bags, researching popular candies of the 80's to put in the bags, finding memorabilia, setting up for the party, and baking the cakes with Mom. 

It was a lot of hard work, yes. But I loved it so very much!

The last time I could really celebrate a birthday I was still in college and was 22 years old. I want to make my 40th FABULOUS because I feel so excited about what life has in store for me this decade.

I can't wait to continue celebrating and continue fundraising this month!

Posing With Our 80's Memorabilia!

Thank you to everyone who has made October my birthday month so special already--with your donations to my campaign, with your attendance at my party, and with all of your love that brought me to this place I find myself in now. 

I'm a blessed girl.

Here's to 40 being FABULOUS!

Sarah: Look carefully--there's the cupcake temporary tattoo from Lana on my forearm!

Be a dancing light,

Emily