Thanksgiving Blessings To You...

Linden Tree Trunk with Snow

Today is Thanksgiving.

Weeping Cherry

For many this is a day filled with friends, family and love. 

Such a Photogenic Tree!

For others, this day is hard for many reasons.

My wise and prayerful friend Marla posted the following on Facebook:

The circle of life is often hard and bittersweet, especially during holidays when life doesn't look like a Hallmark card or weekend movie special. Prayers for hope and human kindness going out to any and all of those struggling today.

A Tree With Character

On Wednesday, we found ourselves blanketed in a beautiful snowfall.

Dogwood Planted for My 15 Year Anniversary

How peaceful. How grounding. How beautiful.

Our HUGE Maple Tree

How perfect.

Our Maple Tree

I rejoiced in being able to go outside, trek around in the four inches of snow with my camera and take a bunch of photos of this winter wonderland. A year ago, I would have ended such an outing exhausted and breathless.

Maple Tree

I wanted to share these photos because they made me feel a sense of peace and calm as the Thanksgiving holiday approached. Trees: they always make me feel more calm and grounded.

Three Trees: 40 Year Old Weeping Cherry, 40 Year Old Maple, and Our New
Weeping Cherry in Front of Our HOME.

However you are feeling this Thanksgiving Day--whether it is a joyful one or a difficult one--may you find precious moments of peace. 

Blessings,

Emily

Introducing Miss Adele Chaya!

May 9, 2014
Two Weeks Old

By now, most of you have met my friend Marjie via my blog. In April, she and her husband adopted a baby girl, Adele Chaya, but because of the adoption agency's rules, they could not post, email or text any photos of Adele until the adoption was finalized in the court. 

Well, that happened TODAY!

So, I can now share one of the joys of the past six months that I've had to keep a very big secret: visiting, snuggling, and feeding Miss Adele at Marjie's house.

I've been trying to visit at least once a month so that Adele will know who I am and so that I can really see her grow. 

It's been really special to me to be a part of the adoption process with Marjie and to be a part of this experience, as I've always wanted to adopt a baby. 

Marjie has been able to realize her dream of motherhood in spite of her health challenges, and that makes it even more special.

May 28, 2014
One Month Old

I had really, really, really hoped to attend the adoption formalization today at the courthouse, but I knew that if I got up that early in the morning, I would be in debt the rest of Thanksgiving week energy-wise. It broke my heart to miss the ceremony.

Marjie describes Adele's cheeks as fluffy and delicious. And they are.

June 20, 2014
Almost Two Months Old!

And she is the curliest, bubbliest, chubby baby too.

It is surreal to go back through my photos of Miss Adele and see how much she has grown in the past six months.

July 19, 2014
Almost Three Months Old!

August 13, 2014
Three and a Half Months Old

I've been getting so much joy out of my visits with this little one, as I am sure you can tell from the pics.

Not Quite Sure of the Date!

So, I'll just let you enjoy the pics of Adele and me. 

September 28, 2014
Five Months Old

Look at My New Tricks Emily!
I Love This Age!

Polka-Dots and Leggings Just Like Mommy
October 31, 2014
And Six Months Old!

November 25, 2014
Seven Months Old 

Here are a couple from today that Marjie posted on FB of Adele's big day! It's official now. It's forever now. Adele Chaya is Marjie and Sean's baby girl for always.

Ready For Her Big Day (in Polka Dots, of Course!)

Couldn't think of a better Thanksgiving gift than this little sweet potato pie!

Can't wait for my next visit Miss Fluffy, Delicious, Curly, Bubbly Little Girl!

Blessings,

Emily

39th Birthday Campaign: Goal REACHED and EXCEEDED!

People must believe in each other, and feel that it can be done and must be done; in that way they are enormously strong. We must keep up each other's courage.

--Vincent Van Gogh--




I am super excited, bouncing off the walls, humbled, grateful, proud, amazed, overwhelmed, flipping out, jumping for joy, tickled pink and over the moon to report our total for my first fundraiser for Dr. ANS . . .

Hip Hip Hooray!

Yes, you read that correctly. . .

Thank you to everyone who believed in me, believed this needed to be done, believed this could be done and made this happen. By supporting this campaign, you have strengthened me and helped me to find my agency in ways you will never know.

Someone Wanted to Be Part of The Photo Shoot!

Your money will go directly to Dr. ANS and his research and will be incredibly impactful. We far surpassed my birthday wish of raising $3900! This is enough money for Dr. ANS to fund about 1 1/2 research assistants.

Dr. ANS and His Davidson Gear

Here is a little note of thanks from the Point Guard himself:

Dear friends and family of Emily:

I am so humbled and moved by your generosity and so grateful to Emily for choosing to celebrate her 39^th year with a fundraising campaign for my research efforts. So often people think that because we are “Johns Hopkins” we cannot possibly need philanthropic support. I’m here to tell you this simply isn’t true and that is why I am so thankful for your donations. My clinic and research efforts are almost entirely funded by philanthropy. It’s the lifeblood of my work. 

I plan to use the dollars raised to hire a research assistant over the summer who helps me with data entry and analysis along with organizing and digitizing patient records. Having someone to help with this important work allows me more time to concentrate on my patients and accelerate my research.

In this season of thanksgiving, thank you for investing in me and my work and thank you for honoring Emily’s birthday wish in such a meaningful way. 

Dr. ANS

Dr. ANS and Me

Dr. ANS is a one man show. There is no nurse in his office. When you call the clinic line, you get HIM! He does all of his own charting, writes all of the prescriptions and mails them himself, answers his own phone, returns about 50 requests a week for consults or referrals, keeps in close contact with his patients (as evidenced by the hundreds of emails I have from him!), and writes personal thank you notes to those who support his work.

In addition to his time spent on research, in clinic with patients, keeping in contact with patients via email and telephone, teaching for the medical school, and being on hospital rounds, Dr. ANS is on call 24 hours a day, 365 days a year. 

He is an active participate in educating others about CFS and Dysautonomia through webinars and by serving on various committees related to CFS, such as the Institute of Medicine's committee to review whether or not a name change for CFS is warranted. He is also a member of the Research Advisory Council of the CFIDS Association of America and a member of the writing group of the IACFS/ME to produce a Pediatric Primer for Clinicians.

The breadth and scope of his work not only deeply impacts his patients, but it also deeply impacts all of us with this illness--patients, doctors treating us, and families coping with it. This is what makes me so passionate about supporting THIS doctor and HIS work--it extends far beyond the care I receive from him.

Wearing MY Davidson Gear and My 'Love Much, Live Well, Laugh Often' Necklace

His clinic is run almost entirely on philanthropy. Why? Because there is very little government  funding for or interest in CFS and Dysautonomia. So, patients like me and doctors like him rely on our money. 

As his endowment grows, the hope is that he will be able to have a part-time research assistant. Or, if 2.5 million happens to come along, a doctor to train with him.

Still Some Blue Hair In There!

As a patient of Dr. ANS for over ten years along with my deep personal experience and connection with these illnesses, I feel that my place to be impactful in this world is now with Dysautonomia and CFS.  I have waited too long to be an active participant in making a difference. I can be an authentic voice for this cause.

"If not now, when?"

-Hillel-

I am ready now.

Gershwin Supports Our Efforts!

I would like to thank the following donors for their support of this incredible campaign. I have used first names only to protect privacy on my blog. If you donated and do not see your name, please contact me! Names are listed in the order donations were received.

Anonymous x 7 Angela K.

Marge R.

Dr. Marcy and Dr. Nick

Tifni H.

Allison S.

Emily H.

Dayna T.

Stacey Y.

Paul K.

Katherine M.

Jeannine

Sarah S.

Patrick and Erin

Aunt Paulette

Aunt Jeanette and Uncle Howdy

Cousin Stephen and Cousin Beth

Elizabeth P.

Nicola H.

Cousin Jan and Cousin Mike Danielle C. James and Rachel Dr. Barb S. Deena and Jim

Andrea M.

Margaret and Kurt

Aunt Diane and Uncle Michael

Cousin Jay and Cousin Kim Rebekah C. Kimberly K. Dad and Abbie

Pamela R.

Carol S.

Wilma S.

Jean K.

Brenda B.

Monica M.

Aunt Mo and Uncle Melvie

Aunt Linda and Uncle Dave

Aunt Jean

Uncle Jerry

Susan B.

Margaret and Kurt

Cousin Rob

Amanda and J.D.

Hadley W.

Ellen S.

Mack and Robin

Mom

David H.

Betty M.

Corina M.

Teri K.

Uncle Dan and Aunt Pat

Uncle Dale and Aunt Norma

Uncle Crazy

Jen and Michael D.

Carrie and Sam

Marla M.

Loralea W.

Whitney B.

Susannah P.

Dad and Abbie

Emily S.

Uncle Larry and Aunt Joan

Meredith H.

Evelyn  W.

Stephanie W.

Cousin Karen and Cousin Loren

Marjorie and Sean

Lisa R.

Shauna G.

Kenneth B.

THANK YOU!

At times like these, THANK YOU never seems like enough. Thank you, my dear friends and family, for supporting me, loving me, journeying with me and blessing me every step of the way.  Dr. ANS and I thank you for giving us the support needed to help find answers for healing. A special thank you, as well, to Mom, Dad and Abbie--for without you none of this would be possible. It is you who sustain all that I am.

Thank you for making turning 39 the best birthday ever! :)

Blessings,

Emily

Relevant Blog Posts:

Over the past six weeks, I've blogged extensively about my fundraising efforts, Dr. ANS, my recent appointment with him, what my health is like day to day, and what Dysautonomia is.

Here is a recap (everything has a hot link embedded for you to click):

How your money matters:

How will the money you gave be IMPACTFUL?

Why did I decide to do this fundraising campaign?

Getting to Know Dr. ANS:

Meet My Point Guard: Dr. ANS

What is the JOB of a Point Guard?

Fundraising Fun: 

I dyed my hair BLUE for Dysautonomia Awareness Month!

G and T "Go Blue" too.

How rewarding "Going Blue" has been.

Health Updates:

My WONDERFUL news from Dr. ANS!

How team work and new meds matter.

Life in 2012 as seen by Dr. ANS.

Life now as seen by Dr. ANS.

About my illnesses:

What is Dysautonomia?

What are the types of Dysautonomia that I have?

How is it that I have both CFS and Dysautonomia?

Quite possibly this has been the BEST. Birthday. Ever.

Monday Dog Blog: Thanksgiving Naps

Tovah Rose 

A little birdie told us that Thanksgiving is this week. 

Did You Hear That Birdie?

Did you hear that too?

After Dinner Snuggle Time

We did.

Gosh, Am I Tired From That Yummy Dinner.
Did You Say There Will Be Turkey Later This Week?

And we just wanted to remind you how important it is to take a nap when you have a full belly. 

I (Gershwin) demand that Mom hold me after dinner so I can get a little rest while I digest.

G "Watches" Some TV

Then, after all of the dishes are done and there's some good TV to watch, settle in for another nap.

It doesn't matter if you are a human or a dog, you NEED a nap on Thanksgiving Day. Well, actually, we nap many times a day every day, but we're here with this PSA encouraging you to nap on Turkey Day.

Thanksgiving Blessings to You,

Tovah Rose and Gershwin