National Day of Listening

All this week, hosts of NPR's Morning Edition and Weekend Edition have been interviewing a parent or loved one about his/her life. It is in preparation for today, The National Day of Listening.

A National Day of Listening? What a wonderful idea! I love it! And it falls on the day after Thanksgiving.

In our house, I do most of the talking and leave my mom's head spinning half of the time. So, I thought I'd try during our ride today to ask her some questions about her life.

She pleaded the fifth! And told me I had to submit the questions in advance so she could have time to think about them! Exasperating! (And she wonders why I do all of the talking? :))

I guess I'm wondering:  Who would you like to interview today? And what would you like to ask them? Who do you miss now that you wish you had asked questions before they died?

I'd love to hear what you have to say!

I'm still hoping to ask my mom and dad some of these questions...and I'd love your ideas!

Blessings,

Emily

Part I: "You Have to Make Hay When the Sun is Shining"

Asher, Mom, and I had a very peaceful, low-key, relaxing Thanksgiving. As you can see from the picture above, the sun was shining today.  As my mom did on Sunday, she offered to take me for a drive to soak in some sunshine.

I waffled. Mom insisted, and I'm glad she did (she's always right on these things, it seems.). 

We went for a ride on a new road built on the mountain ridge. The view from the ridge top is quite spectacular--and even at over 65 MPH, my camera captured the moment and I haven't learned how to do anything other than use the 'Auto' function! On our return, we took a familiar ride through farmland on a road we've travelled many times in my lifetime. The best part was that no one was on the roads because everyone was eating their Thanksgiving meals!

Oh, and we brought candy corn along again! :)

The stretches of time between going anywhere other than to the doctor are so long that when I do get to go for a drive (which hadn't happened for a long time until just a couple of months ago), I don't even remember what the town and surrounding areas look like. The streets seem unfamiliar and the new buildings and roads are sometimes not even 'new' anymore. Oftentimes it has been years since I have seen these roads. If not years, many seasons have passed in between.  It's a strange phenomenon having all of this beauty so close, yet it seems so far away and out of reach.

Going for a ride together is something our family has always enjoyed--my Dad and Abbie go every Sunday, when my parents were married we often went for rides, when I was a baby who wouldn't sleep a ride could lull me into dreamland, and after I first got sick going for a ride was one of the few things that we could still do together. Then, after my Gallbladder surgery, we no longer were able to even go for rides together because I was so sick. Today, going for a ride reminded me of better times and all of the ways we love to spend time together. It was a nice change of pace.

Sometimes, too, I go so long seeing only the space I live in day to day that I think I forget a little too much how beautiful this area is. As we drove passed the mountains, the barns and the fields, I remembered why I love Central Pennsylvania. I remembered why this is my home. I remembered what is good and what is beautiful about where we live. I soaked in some sun, talked my mom's ears off, ate a little candy corn, took pictures, and patted Asher on the head. And I felt happy.

When we arrived home, Mom said, "Well, you have to make hay when the sun is shining." I said, "What?!" I had never heard that expression before. (Corina--are you reading? Here is a new idiom for you!). In a nutshell, if you haven't heard this phrase before, it means that you need to enjoy the sun when it's out, because you don't know when it's going to shine again (especially here in Central Pennsylvania!). I guess that my Grandma Helen used to say this often.

I knew I had things to 'do', piles to sort, but Mom said it was better to make the hay! :) For me, I think there's a lesson to be taken from this old idiom. Maybe some days it's not the the sun in it's literal sense that is shining.  On days when I do get a touch of Spring--those are the days to simply realize that my feeling a bit better is my own personal touch of sun, and it's time on those days to 'make hay' and embrace the day, rather than bog it down with 'to-dos' and 'shoulds'.

After my nap, we had a simple, yet incredibly yummy dinner of fresh Cornish hens, acorn squash and homemade cranberry relish (a new very yummy recipe with blueberries and raisins in it!). For dessert, we had our traditional nightly two squares of dark chocolate. Asher even got something tonight--because after all, we are very thankful for him--so he got the hearts from the Cornish hens (in exchange for waves, shakes, roll-overs, sits and downs!).

We topped off the evening with the ever-classic A Charlie Brown Thanksgiving. Oh how I love Snoopy serving up toast and popcorn for Thanksgiving dinner! (Along with Legally Blonde, I can watch the Peanuts specials and never tire of them--it amazes me that more than 40 years later they are still so fun and funny.)

Maybe the day seems boring to others, but to us it was perfect in its simplicity and peacefulness. It was exactly what we both needed and wanted. We spent time together, we ate good food, and we told each other what we were thankful for--mostly each other, the comfort of our warm and safe home, and of course, Asher. Oh, and I top my list to her with being thankful for her good cooking! :)

And I was reminded of more than I expected to be today. I was reminded that this really is home to me for so many reasons. I was full from a sense of place and home, from the blessing of family, and from the wonderful food. And isn't that what Thanksgiving all about?  Being able to end the day 'full' with Thanksgiving? 

Oh, and I learned to "Make hay when the sun is shining."

I hope your day was one that left you feeling 'full'--not just with good food, but with peace, gratitude and love.

Blessings,

Emily

Photo:  Asher's favorite way to travel---with his head hanging over the edge of the backseat. He's quirky alright! He loves to go for rides, but I think it's more about the feel of the ride rather than taking in the view. (He just doesn't realize how many cows, and pigs and horses he misses getting bark at!) He has always, since we rescued him, felt the safest when he is in the car.

Part II: You Have to Make Hay When the Sun is Shining

Here are the pictures from today's outing.  First, views from the mountain ridge top. They just recently finished this road and it offers a unique view of the valley and the mountains. Not sure how this road is going to be to travel on in the winter! (Dad and Abbie always go for Sunday afternoon rides, so Dad always gives Mom and I a place to go! Very helpful, indeed.)

Asher perked up for a bit to take in the view...isn't he just so cute? :) Or was it the candy corn he wanted? He didn't get any today! He had to save his calories for the Cornish hen hearts.

These last two pictures are from the return trip which, instead of taking the interstate back the same direction, we went a different route. Mom travelled this road many times in her commute to work for 25 years! I've also travelled this road many times. Today I thought I just might like to go into specializing in photographing the barns of Central Pennsylvania? What do you think? :)

One field was still covered in snow, while the other was not.

Blessings,

Emily

Just Call Me "Reese"!

So, I look just like Reese Witherspoon, don't I? :) Okay, as close as I'm ever gonna get!

I'm also loving this new hat from Anne. My favorite colors!

I haven't had my haircut for quite some time, so it was quite long. Surprisingly, I was able to get in one day this week to go to get my hair cut--something that always makes me feel better. I went right before my shot on Monday, before I started herxing more.  I can't explain what it is about haircuts, but they always make me feel beautiful and uplifted. Until I couldn't even leave my house to get a haircut, I didn't quite realize HOW much I love the feel of a fresh trim (or a big change). Since being sick I've cut my hair as short as one inch long and let it grow longer than it was before this haircut.

On Monday, I arrived at Judy's salon with my hair quite long (see photo below). Usually, I need to spend a bit of time 'talking through' what options might be good choices for my haircut. The same as last time? Leave a little more length? Go shorter? More layers? Less layers? Bangs? No bangs? I have an issue with having to deliberate over EVERY decision I make in life!

This time, I walked in and said, "Judy, are you feeling inspired today?" And from there, I told her to have at it and make me beautiful! She saw that I had brought a picture of Reese Witherspoon on the cover this week's Parade magazine...and as it turns out our hair is fairly similar in the way it falls (wavy, but not curly and not straight), so a few layers really perk up the curl. Rarely do I think a celebrity haircut will work on me--I want easy, simple, no blow-dry, no product! 

It's so unlike me just to say: Go for it! And let go of any sort of control over the situation. But what I needed on Monday was to let go. I feel so out of control of so many things in my life now. What's a haircut? It always grows back anyways. And it's freeing to let someone else take care of what they do best. 

And, Judy did great. I look just like Reese, of course. :) And who doesn't want to be as smart, as beautiful, as talented, and as big-hearted as Reese? 

Oh, and if you didn't know...Legally Blonde is my favorite movie to watch over and over again (I have no other movie that makes me laugh over and over again--I'm usually the type of person who watches a movie one time and that's it. But, I still love Legally Blonde!)

Me and Judy at the Salon. She's been so accommodating to me and made it easier for me to come in for haircuts. Can you tell she doesn't like getting her picture taken? :)

Oooh, look at all of that hair! :) This is just some of it...the rest hadn't been swept into a pile yet. Let's just say, I cut a bit off!

The 'before' picture...ready to be free of all this hair!

Blessings,

Emily 

A Sunny Sunday Afternoon Drive

Happy Thanksgiving!

This past Sunday, Mom, Asher and I went for a ride around the outskirts of town. Sunday was the first and last sunny day we've had in a while, so we used it as an opportunity for me to get some Vitamin D and cheering up. 

I've been feeling miserable from the Lyme meds (I know, I sound like a broken record), and Mom has been patiently working to find ways to 'distract' me from how lousy I feel.

So, we all went for a little ride. I brought along some little packets of candy corn (courtesy of Anne) to make it feel like I was on some sort of adventure or 'real' trip. We all (Asher included) enjoyed the goodies. I promise I only ate a little bit!

I love my new camera and I took it along to test it out. I took these pictures through the car windows while we were driving --and they still captured the day pretty well. 

One of my favorite parts about where we live is all of the farmland, the barns, the rural areas. 

I love the light covering of snow on the cornfields. I love the barns.  I love the mountains surrounding us. I love watching the fields, trees and mountains change from season to season. 

I haven't even posted my pictures of the Fall colors from a ride I took with Dad and Abbie, and it seems winter is already here.

So, here are a few pictures that make me feel warm and fuzzy and happy and cozy on these cold days. And they make me think of family the comfort of home. I hope you'll enjoy your little dose of Pennsylvania today!

Here's wishing you and your loved ones a blessed Thanksgiving.

Blessings,

Emily

A Sunny Sunday Afternoon Drive

Photos:  Around town...

Under Our Skin, Oprah, and Dr. Oz!

Well, I'm still out here--sorta kinda. Just really, really sick from increasing Lyme meds. So, just an apology here and now (before I get to the meat of this blog) for unreturned emails and phone calls. The first places I try to go are here and Facebook, so I can at least somewhat try to touch base with the outside world!

Anyways, to the BIG, EXCITING point of this post. I've been going through a particularly LONG and DIFFICULT patch these days, which is all the more reason I'm excited to get the news out about the latest in Lyme Disease awareness.

The documentary, Under Our Skin, has been winning awards right and left. And now, the film-maker sits down with Dr. Oz for an interview on the Oprah and Friends channel on SiriusXM. It doesn't appear I'll be able to find a way to listen in, but if any of you can (you can get a free 30 day trial of SiriusXM so you can listen in!) let me know how it is! 

I'm really excited about the publicity this film is getting and, ultimately what people are beginning to see and believe about Lyme Disease. We have so far to go, but this is certainly a good beginning!

I hope that I will get to send my story in to Dr. Oz on the site...but I'm getting a shot tomorrow, so that could be iffy. 

I've bolded and put in big print the stuff in that's really important in the announcement (below). It's powerful stuff.

Blessings and Happy Thanksgiving!

Emily 

Under Our Skin Social Media Release
11.21.2008

UNDER OUR SKIN on Dr. Oz Show, Oprah & Friends SiriusXM Radio

Radio Interview about Lyme Disease Documentary Runs on Busiest Travel Day of the Year

Quick Pitch
Oprah's Dr. Oz discusses the complexities and controversies of Lyme disease with filmmaker Andy Abrahams Wilson.

FULL RELEASE

(New York, NY)—Under Our Skin, an award winning documentary about Lyme disease, is featured on the Dr. Oz Show on Oprah and Friends SiriusXM Radio, Wednesday, November 26th. Dr. Mehmet Oz puts the national spotlight on the documentary that investigates the human, medical and political dimensions of Lyme disease. Joining Dr. Oz is Under Our Skin filmmaker Andy Abrahams Wilson who explains how he followed Lyme patients and physicians for four years through their long and devastating journeys dealing with this crippling disease.

Dr. Oz calls the documentary “fascinating and compelling” and says his entire family “couldn’t stop watching.” Dr. Oz is a prominent heart surgeon at Columbia University and New York Presbyterian Hospital, who has been called “America’s doctor” because of his best-selling books and appearances on The Oprah Winfrey Show. He also has been honored as Time Magazine and Harvard Alumni’s 100 Most Influential People. “Dr. Oz gives great credibility and will heighten awareness about the seriousness of chronic Lyme disease,” Wilson says, “plus the show is being aired in a key time slot – on the busiest travel days of the year, so many people be will listening to the interview on the radio while traveling to their Thanksgiving Day destinations.”

In an hour long interview, Dr. Oz and Wilson discuss what could be the most controversial and misunderstood illness in America today. Tens of thousands of victims go either undiagnosed or misdiagnosed with such conditions as multiple sclerosis, Lou Gehrig’s disease, Parkinson’s disease, fibromyalgia, chronic fatigue, autism and even hypochondria. Is Lyme disease rare and easily treated with a short course of antibiotics? Or can it be a chronic and potentially deadly illness that is going under the radar? Tune in and hear the discussion.

The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online. Dr. Oz also asks for Lyme patients to tell their stories by clicking on this link: https://www.oprah.com/plugform.jsp?plugId=495&referer= .

Under Our Skin is currently set for a theatrical release in spring 2009. For interviews with the filmmaker or any of the subjects featured in the film, please contact Marc Silverstein at Marc@onthemarcmedia.com or 410-963-2345.

From: http://www.pitchengine.com/underourskin/under-our-skin-on-dr-oz-show-oprah--friends-siriusxm-radio/1592/

Being Computer-less: Lessons Learned

Note: I wrote this blog over a month ago (October 5th to be exact) and somehow never came back to it. I've decided to publish it, even though I have to say, my old habits haven't changed much! But my view of my computer as a necessary and crucial lifeline has stayed the same. 

After my computer crashed, I spent the next three weeks with limited access to the Internet via my mom's computer. Because she has a desktop and not a laptop, I was only able to check in for short little bits of time during those three weeks.

Oddly, being on a computer other than my own felt like somehow being in an unfamiliar and strange place. Where were MY icons? Where was my Picasa program with all of my pictures? Where were all of my saved passwords and websites? What was I gonna do with those new pictures I just took and wanted to download? When I got my own computer back it felt like a part of me was back.

I guess that was when I realized that three weeks without a computer had taught me a few lessons...both about the good and the bad of my life in the computer age!

While I learned, mostly, that my computer is a lifeline for me, I also learned that I've developed a few bad habits with it! My computer has taken up residence in my bedroom, which means that every time I get up to pee (which is a zillion times a day) or come in to my room for something I check to see if I have new email. At night, I get distracted checking email or such rather than staying focused on a TV show or book on CD and doing a better job winding down for the night.

So, I'm very much looking forward to trying to be more disciplined about that aspect of things. I know this will be much easier when we do some rearranging so that I use a separate room as a study...that way, I can leave my computer in there at night. I'm definitely addicted to checking for new emails and such, so this is going to be hard to change!

Still, while I often say I'd like to just throw my computer out the window some days (especially when it's not working--which has seemed to be more often than not in the past year), in reality I couldn't do this. I admire my friends who manage their lives without email or internet, who rely soley on in-person interactions, telephone and snail mail. I often wish I could be in that world.

I thought maybe I'd learn to like my little world without a computer. I thought that I would have more time and energy for other things. I thought I would get all sorts of other things done. I thought I'd call more people or sort through more piles of papers sitting around.

In reality though, even without my computer around, I didn't get anything more done than I would have otherwise. I definitely watched more TV shows and listened to more books on CD--both of which I enjoyed, but my productivity levels didn't increase.

As much as I'd like my world to be less dependent on the computer and internet, I realized how much it HAS to be, given my current life circumstances.

There are only so many activities that can be done reclining or supine, require very little physical activity, and can be done quietly.

While I always prefer in person visits or phone calls, I realized how little energy I actually have for them most of the time. Even without my computer around as a 'distraction' I wasn't able to make more phone calls.

I realized why I rely so much on the computer to stay connected to the outside world. I often go days or even weeks without going anywhere outside of my house other than to the doctor's office for a shot or for a little walk over to a neighbor's house for a few minutes.

During the three weeks without a computer, I discovered how often I felt like I didn't have a 'place' to go. I didn't have the energy to sit up long enough to write out a long email to a friend letting her know how down I was feeling and what was really going on. I didn't have the energy to blog about all of the things spinning in my head. Instead, it all just kind of 'sat' there inside me.

I've often been critical of my time on the computer as being wasted or unproductive. But, in reality, most of my time on the computer is spent connecting with others either through email or blogging (and yes, now Facebook). I read my friend's blogs to stay connected to them. I email my doctor's with questions. I check the weather so that I can set out my clothes the night before for the next day. I check out and renew library books. I find out what books are new and what music is new. I check the news. I see my friend's pictures and watch their children grow.

My computer is, in many ways, my lifeline. While I was without it, I about drove my mom out of her head because I talked EVEN MORE to her than I do when I have a computer.

I wish my computer wasn't so much a part of my world. I wish that my world was bigger and my adventures broader than this computer screen.

But at the same time, I'm grateful that this little computer can bring a world to me in ways not even possible earlier in my lifetime. I'm grateful that it keeps me connected to my friends and family in ways I couldn't do otherwise. I'm grateful that it keeps me part of the world. I'm grateful that it gives me an outlet for writing. And I'm grateful for the pace it allows me--one of working in bits and pieces--as my energy allows.

I still have a love-hate relationship with my computer, but for the most part, three weeks without it taught me that I need a computer to have a sense of being part of the world. Maybe someday that will change, but if not, at least I have the resources to have a computer and internet.

I know for myself and many of my other friends with chronic illness, we rely on our computers for so much more than we ever imagined.

Here's to 'healthier' computer use in my world after my computer forced me into such great introspection! :)

Blessings,

Emily

Photos:  My Dell Inspiron 8600--approaching age five. And letting me know it too!

Waiting For Daisy

Note:  This is a tough post. It's also long. Thank you in advance for reading and supporting me.

I have been spending more time lately than I'd like to admit Waiting for Daisy...

Ever since I can remember, I have wanted to be a mom. I never questioned whether or not this would be possible. I took for granted that this experience would be mine someday. 

When I asked my Dad if he remembers me wanting to be a mom, he says that almost as far back as he can remember I have wanted to be a mom. My best friend, Jeannine, says that becoming a mom was always very much a part of who I was, and who I still am.  Most of my friends know that I want to be a mom, but in truth I've shared very little about how much I'm struggling with the possibility that this dream may not come true. I've done a lot of crying.

Since getting sick, I've had a lot of time to think about what I want in this life, including becoming a mother. I have had time to think about why I want to be a mother. I have had time to ask the really hard questions about motherhood.  I have watched my friends become mothers. I have talked to my mom a lot about the choices we make as women when we decide to become mothers.

I remember sitting out on the front stoop of the apartment Jeannine and I rented in 2001. I remember saying to my mom that I knew that I was never going to 'have it all' in the ways that I had imagined--career and family.  I knew that I came from a family that valued success in career and academics, but I also knew in that moment that my life had forever changed. My priorities had changed. If I had a choice, I said, I would choose to be a mom over having a career. This statement has been met only with love and understanding from my parents, as what they want most for me is what makes me happy.

I do not have an idealized picture of motherhood. I have talked honestly and openly about it with my own mother, and with other mothers. I have questioned whether or not I really want to be a mother and why.

Knowing all that I know, knowing how incredibly difficult it is, I still want to be a mom.

But I never want to be a mom without knowing that I am giving a child the best I possibly can. I do not want to bring a child into the world knowing that I can't take care of myself, more or less another human being. I would never get pregnant if Lyme specialists thought that my Lyme could be passed to my child in utero. I will not become a mother if I cannot provide the emotional, financial and social support needed to raise a child. 

I also want to keep my heart open to children coming into my life through other avenues such as adoption or marrying a man who already has children. 

No matter how I become a mom--whether biologically or through adoption--I will be overjoyed at being a mom.  

I will accept children with open arms however they come into my life. I know this. But there is still a part of me that has always wanted to have a biological child, to experience pregnancy and childbirth, to breast feed, and to create a life with someone I love. I mean, I took a whole seminar on childbirth in college--and even got up for that 8:30 a.m elective course!

Each year since turning 30, I have been keenly aware of that wonderful thing called the biological clock. And mine is ticking. That thought makes my stomach churn. 

I went to the gynecologist last week for my annual appointment. I did not ask for advice on having children, but I got an earful anyways. My gynecologist, without prompting, told me that I had so many factors, including age, working against me that I would likely never have children. She told me that my body could not take the stress of pregnancy, labor and delivery. 

First, I didn't ask about getting pregnant. I'm not in a relationship or in a position to get pregnant. I did not ask for her opinion of what the future might hold. When did it become her place to take away my hope? When did women become 'expired' at 33? When did it become her place to tell me I had better consider adoption and fostering a child instead? 

Honestly, if this blog, if this topic, had not already been at the forefront of my mind more than I'd like to admit, I could have more easily shrugged off her statements. But because they came so out of the blue and so unsolicited, I found myself back to thinking about, well, babies.

So, what is this "Waiting for Daisy" part of things? 

Waiting for Daisy is a book written by a woman who endured six years of fertility treatments before becoming pregnant. Later, she wished that she had been able to enjoy her life as it was rather than waiting for her happiness. She wished, as my friend Tess wrote, that she could have told herself, "This is your life, whatever happens." Not "This is your life, but only if you have a baby."

When Tess visited me over a year ago she asked me if I felt that I had 'lost' my life to this illness.  She asked me this question based on the book Waiting for Daisy.  At that time, I said, with great assurance that the time I have spent sick has not been lost. It has been very, very difficult, but it has also shaped me into who I am today.

What has happened to the assurance with which I answered Tess a little over a year ago? 

I have fallen into that very negative and dark place of wanting a baby so badly that I cannot see out of it. In some ways I'm embarrassed and ashamed to admit this. I'm also scared.  Most of my friends are mothers of small children and some are currently pregnant. 

I hate myself when I feel anger, jealousy or envy at the news of a pregnancy or when I see photos of babies. I LOVE my friends' children. I have come to love these children, even from afar. I bask in being an aunt to David. I'm afraid that by writing this blog, my friends will try to protect me and stop telling me as much about motherhood and their children. Let me state right now that this is the last thing I want to happen! I want to be a part of you and your children's lives...it's me that has to figure out how to be better at this all.

A large part of what has sent me into 'hibernation' lately and left me much less social, is that I'm trying to find a way to regroup. I'm trying to find a way out of this obsession with only seeing my life as meaningful if I am married and a mother. 

I'm also trying to figure out how one finds the balance between holding onto dreams and letting them go. How do we decide when it's time to let a dream go? How do we, while holding onto a dream, still live our lives to the fullest? If we can't have the dream we want the very most in the whole world, how do we re-frame our life? How do we live a meaningful life in spite of whatever happens? How do we let go enough to just 'wait and see' if the dream unfolds or not?And accept whatever happens?

I know on a deep level that I will and can be happy whether I have children or not, whether I marry or not. I know that I have much to give and many passions. But sometimes, it's very hard to stop those little voices once they start. I know that I will make my life meaningful whether I become a mom or not.

Still, what I needed to hear the other day at the doctor's office was this: "When the time comes to talk about becoming a mother, we'll discuss the options." I did not need someone to make a decision for me that was, at this point, not based on facts. 

When I got home, I asked my mom if she wanted me to give up the dream of becoming a mother. I thought, perhaps, what the gynecologist had said to me would be a relief to friends and family. Had she simply said to me what they felt they could not? Instead, my friends (okay, I've only told two people!), Mom, and Dad have been outraged. Both my mom and dad have said that it was not her place to try to take away my hope or to even approach the subject, since I had not asked about it.

I don't know how to walk this very difficult line. I don't know how to always feel joyful for my friends when I find out they are pregnant. I don't know how to be free of jealousy and envy. I don't know how to not want to be a mother. I don't know how yet, to live a life that doesn't include the possibility of becoming a mother. I don't know how not to feel incredible grief and sadness as each year passes and I am no closer to realizing this dream.

What I do know is that I do not want to spend my time feeling like I do now. I want to enjoy my friend's children completely and fully, without bitterness or envy. I want to embrace their joys and their sorrows with open arms.  I want to be David's favorite aunt, and his mother's best friend. I want to keep 'practicing being a mom' with Miss Alexandra (her words, not mine!). I want to enjoy children the way I always did before I thought I couldn't become a mother--which was fully, openly and joyfully. I want to open my heart back up to children, rather than close it off because I am afraid I will never have a child of my own. 

And yes, I still want to be a mom more than anything in this world. 

But while I'm waiting for Daisy, I want to figure out how to live the most meaningful life I possibly can.  I don't want to look back and say that I waited to be happy. 

Blessings, 

Emily

P.S. I realize that this is a really tough blog to read and to receive. I wrote it because I felt that until I shared how I really felt, I would not be able to move past this. I also know that I need your help and understanding as I grieve and find my way.  I have been holding this in for way too long now, and I've been a poorer friend for it. 

P.P.S. Please don't stop telling me about your beautiful children or sending me your pictures! :)

Photo:  Okay, so I realize this is not a picture of a daisy!  It's a pansy.  But these are the hardiest darned pansies I've ever seen.  We've had several frosts and the pansies are still alive! Everything else has died from the frosts. I guess I saw these little flowers in our yard as little fighters telling me to keep dreams alive.

Part III: Dayeinu! More Me and Wynton!

During the twenty-minute wait for Wynton, I admit I felt myself fading and the color going from my face from sitting upright for so long. And I was also getting a bit nervous! What was I going to say to him?! (I don't exactly meet famous people on a regular basis!)

When Wynton did come out, he shook my hand, talked to me, signed my program (with "Happy Birthday Emily, Wynton"), the photographers took a zillion pictures (as you can see!), and he headed up for the reception.

He is incredibly quiet and soft-spoken. He also very funny and full of flattery. He kept saying how beautiful I was and asked me for 'some sugar'. I so wish I had a picture of me kissing and hugging Wynton because I got to do so twice! :) He spent much more time with me than I expected, and although I am pretty much never at a loss for words, I was so shocked at meeting him and actually getting to converse with him that I wished later I had said so many things differently. Mostly, I wish that I had thanked him for being not only a great musician but also for being an educator, a great steward of jazz music, and a generous humanitarian. 

After I met Wynton, I somehow managed to climb UP all of those stairs I had gone down earlier. Ah, the gift of some extra adrenaline. 

And so began my birthday celebration--with an outing to a concert and a meeting with Wynton.

As I laid in bed that night reflecting on the event, I just kept thinking about the events of the past couple of weeks.

The evening of the concert coincided with the end of Yom Kippur, during which Jews were busy breaking the fast of the last 24 hours. I remarked to Mom during the concert that I thought the performance was a pretty darned good way to 'break the fast' in our own celebratory way.

In Judaism, Rosh Hashanah (the Jewish New Year) is followed by 10 days of introspection.  At Rosh Hashanah we eat foods sweetened with honey and wish each other a sweet new year. Then, in preparation for Yom Kippur, we spend time thinking about the year passed.  During Yom Kippur, the Day of Atonement, we ask God for forgiveness, we ask those we have wronged for forgiveness, we ask God to be merciful and to 'write us into the Book of Life' for another year.

This year, having both the Jewish New Year, the symbolic writing of another year of life into the Book of Life, and having a new year in birthdays fall at the same time seemed to call for some extra introspection. 

I headed into a new year tentatively and uncertain. 

And then I felt joyful in a way I hadn't in a long time. 

After the concert, I could only think of a word we use at Passover:  Dayeinu.  At Passover we mention the many things God has done for us--we say "If God had only done such and such, it would have been enough." And we say that over and over again about the blessings he gave us as we recount the Exodus. 

If I had only seen the concert, it would have been enough. Dayeinu.

If I had only felt well, it would have been enough. Dayeinu.

If I had only come home and not felt sick, it would have been enough. Dayeinu.

If I had only been able to wear 'real clothes', it would have been enough. Dayeinu.

If I had only had the platform to see so clearly, it would have been enough. Dayeinu.

I had all of these things and more. And my birthday wasn't even officially here yet!

I'm still overwhelmed by the memory of what happened. I'm so thankful to Lisa for making me feel welcomed and unembarrassed by my disability. I am humbled by what she does to make concert-going happen for me.  I am grateful for what she did for my birthday. I'm wondering what I did to be so blessed by her. I'm thankful to Wynton for his incredible kindness in taking so much time to be with me. 

Did Lisa know I needed something special? Did she know I needed joy again? I'll never know, but I'll forever be grateful, humbled and reminded of why I fight so hard for healing. Many times since the concert, I have conjured images of the concert and meeting Wynton, just as a little reminder. And, I have to pinch myself a bit to believe it all.

Blessings,

Emily

Photos:  Courtesy of Lisa and the photographers at the theatre...

Part II: Me and Wynton

As you can see from the series of pictures included throughout the next two blog entries, I'm VERY excited about meeting Wynton!

Here is the story in full...

When Mom and I saw that Wynton Marsalis would be performing here the evening before my birthday, she suggested that we get tickets.  My hesitation is never that I don't want to go, but that I never know how I am going to feel. I took the plunge, as I did with the Itzhak Perlman concert, and bought tickets anyways.  I knew I'd get there somehow for the event.

One of the reasons my blogs have been so few and far between as of late is that I've been going from one medication change to another--either for Lyme for ANS issues. Plus, if I get the chance to squeeze in fun stuff there isn't usually energy left to blog about it!

Before my birthday I started a new medication (that I had tried many years ago) to help with sleep, ANS agitation, anxiety, etc. Long story short, I ended up spending almost two weeks with plummeting blood pressure at night (meaning up sick and no sleep) and feeling extra miserable during the day. 

Three days before my birthday I emailed Dr. ANS to let him know what was going on and he adjusted another medication that also lowers blood pressure (my beta-blocker). I made this medication change on Wednesday. 

The concert was on Thursday. At this point I had my doubts about making it to the concert at all, much less actually being able to enjoy it. 

But Dr. ANS is a master puzzle solver.  By Thursday I felt significantly better--a fast turn-around for me!

I dressed for the concert in brand-new clothes, my first fall non-sweatsuit clothes that I have worn in a long time. I even wore a pair of heels I hadn't worn in years. I was actually dressed to go out!

And so began my evening...

The day before the concert, my mom went to the auditorium to drop off my 'big bird chair' as I like to call it. It's a reclining zero-gravity chair. 

Lisa, the audiences services manager, met Mom there to set the chair up so that it would be there when we arrived the next night.  They had even built a platform for my chair--which made my view spectacular! Also the seats in front of me were blocked off so my view wouldn't be obstructed. Lisa, to say the least, spoils me.

My first interaction with Lisa occurred when I found out that Perlman would be performing.  I wanted desperately to go to the concert. My best friend, Carrie, who is a theatre manager encouraged me to call. Honestly, I was afraid to call and afraid of the response I would get upon my request for the type of accommodations I needed.

But then I met Lisa.  Lisa's encouragment, enthusiasm, acceptance and helpfulness have been overwhelming. 

When Mom dropped off the chair, Lisa told my mom she had a secret and my mom could NOT tell me. Now, secret-keeping is not my mom's specialty. Lisa told my mom what she had arranged to happen after the concert.

Both she and my dad (who is a very good secret keeper) kept me in the dark! I asked my Dad if he wanted me to call him after the concert and he said, "Yes, definitely." I said, "Are you sure? It might be past your bedtime." "No, no," he persisted, "call anytime. Call whenever you get done." I still did not suspect anything!  When I called him that night after the concert, he had been waiting up for my call. I do wish he could have seen the event too.  He takes great joy in my triumphs.

I spent the entire night completely clueless as to what was to come.

The concert was remarkable. I marveled that I had been able to feel well throughout the entire concert, free of neck pain and brain fog. Live jazz is spectacular, and oh how I've missed it.

In high school, when I played in jazz band and Wynton was breaking out onto the jazz scene as the hot new young talent, he visited our high school to give a master class. He had recently been on the cover of Time magazine and I got his autograph. Later Mom and I went to see him perform (at the same auditorium we were at this night--I have many happy memories of this place!) also with the Lincoln Center Jazz Orchestra. I look back now and remember that I had a math test to study for that school night. We left at intermission so that I could go home and study! Oh good grief! If only I knew then what I do now?!

Lisa always welcomes us to a concert, checking to make sure that we have everything we need, then checks back at intermission or after the show. 

When she arrived after the show to ask how we enjoyed the performance, I said "It was great, but I really have to pee!" and went to use the 'secret potty' in the tech room. She said, "Go ahead, I'll be here waiting for you when you get back."

I assumed the staff were waiting to help us carry the chair and such out to the car. Oh, how wrong I was!

Lisa said, "Come this way." We headed down a bunch of stairs (going down is no problem for me--it's the going up part that doesn't go very well!) to the entrance back stage. 

While waiting there, Lisa had a host of folks who had attended the concert sing Happy Birthday to me. Usually, I don't get embarrassed by that sort of attention, but I was so surprised and overwhelmed!  

One woman said, "How old are you going to be?" I said, "33" (not so happily). She said, "Oh 33 is my favorite number! This is going to be a great year!"

I admit that until I was more than halfway down the steps to the front of the auditorium, I had NO idea what Lisa had up her sleeve. I suspected nothing. And Mom had done an amazing job of keeping the secret. 

As we went down the stairs, I started to realize maybe I was going to meet Wynton! I thought, however, that it would be a quick happy birthday, nice to meet you, shake my hand, sign my program and that would be that.

After a short wait outside the backstage room, we (me, Mom, and our neighbor Barbara) were escorted to the backstage area.  Lisa had a chair set up for me to sit in and wait and got a fresh program to have autographed. 

We waited for quite a while, as Wynton 'warmed down' on the piano in the practice room next door. The photographers were there and a few members of the 'Jazz Train' who would go up to the reception afterwards. I felt like a princess.

. . . Part III to arrive in your inbox next! :)

Part I: Birthday Surprises: Meeting Wynton Marsalis!

As I mentioned in an earlier blog, my birthday exceeded, in so very many ways, any expectations I could have had. 

The absolute biggest highlight of my 33rd birthday was being able to go to a performance of the Lincoln Center Jazz Orchestra with Wynton Marsalis.  Afterwards, I received the biggest surprise of all--a personal meeting with Wynton. 

I'm still, almost a month later, in complete shock that this actually happened. I am also humbled by all of the effort that went into making this possible for me and by the honor of meeting him. 

These are my two favorite pictures from the event (taken by photographers there).  I've had many, many rough days lately, and this event absolutely made my spirits soar. For those of you who are interested, I am writing about the event in full in (in different posts) and including more pictures from the very special, and unforgettable, birthday. Because I never, never want to forget how wonderful it was.

Blessings, 

Emily

Fall Back and First Pictures...

I really love 'Fall Back' when it comes to time. I mean who doesn't love an extra hour of sleep?I'm hoping that somehow I'll get on a bit better schedule with the time change, as I was getting to sleep around 2 or 3 am after 'Spring Forward'. I'd like to be falling asleep a little earlier than that! 

Mostly I just wanted to share these photos of the maple tree in our front yard towards the end of the fall season. Mom's done all of the raking (and has a backache to remind her of all the hours she's spent raking!) and most of the leaves on our trees have fallen. 

The day before my birthday my camera (a three year old Kodak Easy Share) bit the dust. Honestly, I wasn't a tad bit sad and had already been thinking about purchasing a new digital camera. I'm thrilled with the results of the very first pictures I took with my new Canon Elph SD1100.  And I hope you will be too! 

The camera is amazingly easy to use and takes photos so much better than the Kodak did.  The old camera would never have captured the sunlight on the leaves--it would have just given me a blurry image.  And it's even cute as can be in its chocolate brown color! 

In other exciting camera news, I was actually able to go to Circuit City with Mom to pick out the camera (color is VERY important you know...I couldn't decide between the pink and the brown).  So, I was doubly excited to get to go on and outing to actually choose the camera myself.

We had a beautiful fall here. And these pictures are just from our own backyard!

Blessings,

Emily