My History With Eczema

I first learned about this impossibly hard to spell disease when I was a little girl. I had practiced ballet for years, a discipline where the body is key and scrutinized constantly. Though my parents did an excellent job finding a school where everyone was accepted and body image was not emphasized one might still notice differences between yourself and another girl simply because we wore only a simple leotard and tights.

I noticed that one of my dear friends, Courtney, had markings all over her arms. This was a type of rash I had never seen before – peculiar, red and raised. It look extremely uncomfortable so I asked about it being as empathetic as my own daughter, who when hearing another child scolded bursts into tears.

Mommy's dancing, Daddy's skin.

Courtney was unintimidated by my curiosity and quickly answered my question. She told me that it was a rash that she had constantly and was itchy and that she had a special lotion for. (pretty good for a 9 year old) I smiled and went back to goofing off. I never thought about it again.

That is until I met Andrew.

I was in love with Andrew from the moment I met him and the peculiar redness to his skin was something that was easily out-shined by his inner light and something I didn’t even see until we had known each other a few years.

We were sitting on an open lawn. I, with my browning skin, sat in a tank top and shorts and enjoyed the new beams of the spring sun as if gloating about my genetic make-up while Andrew sat as near as he could to the shade wearing a fleece and jeans and obviously sweating. I glanced at his hands and saw what looked like a massive 2nd degree burn all over his fingers and asked what the heck he had done to himself. He blushed under his freckles and looked away to tell me it was from his dark room chemicals.

I told him he should stop developing his own pictures, get a new hobby and then I moved on to another topic.

He got a bad sunburn that day.

Years later when we began dating Andrew was finally open with me about the rash that crept into his hair line, covered his arms and legs and inflamed his back. He told me he had Eczema, expecting that I had never heard of it. He was embarrassed I could tell and I saw him try not to scratch too much while he was around me. I was confused. Why was he content with his misery like there was nothing he could do about it? Though Courtney had told me about Eczema so long ago she had not explained how horribly uncomfortable it was. But Andrew seemed to have resigned himself to a disease without a cure and figured it wasn’t too bad because the prognosis didn’t lead to his death.

Two years ago I gave birth to a beautiful baby girl, who Andrew and I named Clare, which means “light” or “clarity”. While were pregnant with her we thought only of how beautiful she would be and her personality and the life that we would get to see her live. She was three months old when we noticed something strange about her skin. It almost seemed as if she had boils on her skin. We tried different solutions for a month with our pediatrician and were in and out of the office almost every week. Finally she recommended us to a dermatologist, who after looking at Clare for a split second diagnosed her with Eczema. “Just like her daddy” she said with a smile as if that was cute or something we wanted to hear like “freckles” or “blue eyes”.

I was devastated not because I cared about the red blotches all over her little body but that it meant I had to see another loved one suffer through extreme itching (like that of poison ivy or chicken pox) for what could be her entire life.

We are now approaching the birth of our second daughter and with all the wonderful dreams about her we are also anxious about what the state of her skin might be.

I will be chronicling our experience with eczema as a part of my blog to encourage those who might come across it. Look for more articles in the future.

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Winter Confessions

  • I eat at least 6 meals a day. I realize I’m not normal
  • I browse Etsy almost every day. Pitiful.
  • I often stick my fingers in our rice bin. I love the feeling. And for this reason it is rare that we serve rice at our house when guests come to eat.
  • I love getting stains out of clothes.
  • I laugh when Clare says words that sound like swear words.
  • I own more journals that I have items of clothing. I can’t bring myself to throw any of them away. Hoarder? You tell me.

A Shameless Plug

It is very rare that daughters can call their mothers “friend.” After years of puberty and then menopause it’s a wonder that mothers and daughters even speak to each other.

Yet it was during this time that my mother, Loris Nebbia, and I were developing our art, inspired by but separate from each other. In the corridors of our little colonial house in sweet and beautiful Annapolis, MD we were honing our creative skills and forming what would become our life’s work, bonding us together in ways we did not yet know.

I was born and I started writing music. My first song was titled It’s A Fine Morning To Get Up based loosely on a favorite childhood book. Through the years I continued developing my skills as a singer and performer with the unending support of my parents, friends and family. In college I remember expressing to my mom the frustrations that came along with writing songs and my insatiable need to do so amid my busy academic semester. My mom would say, “But you have such a nice voice. Why write music? Just sing Dream A Little Dream of Me.”

Despite her confusion over my need to write my own material she loved and encouraged my art and in February 2009 I released my first full length album, Comet Child. That fall I gave birth to Clare and immediately released another somewhat experimental album with friend Rob Levit called Leave A Light On. She attends almost everyone of my shows. She babysits for the ones she misses.

I’m in debt to her for the hours she spent listening to me plow through unfinished songs again and again. I owe her my life for the countless cups of tea she made me while I poured my heart out about my desires and dreams for my music. I will never be able to repay her for letting me live in her home to save money so that I could afford to release my album. She is … my inspiration.

I have distinct memories of my mom writing, stowed away in her cubbyhole of an office trying to concentrate as we bombarded her with little needs and pithy questions and unnecessary drama that all needed immediate attention. I remember not understanding why she wanted to write if it was so hard for her (sound familiar?).

On November 26th my mom will release her first novel, Solomon’s Puzzle. It’s a beautifully written story, based in Annapolis, about a boy who is faced, quite brutally I might add, with the discovery of his true identity – feeling impossibly close to his new found friends and equally distant from those he is supposedly related to.

The novel is such an incredible reflection of my mother’s heart – the beauty she sees and creates along with her uncanny understanding of teenagers and their search for sincere meaning and true purpose. Her luminous pros will have you swooning and dreaming of a time and place you know but have never seen and can only touch with the bright arm of your imagination. Her characters will enrich you and carry over into your every day life. “Did you hear what happened to Ben Hunter?!” you will say to your friends and family only to realize you are again talking about a fictional character as if they were a real live person, one with whom you just had dinner.

I am unbelievably proud of her for the courage and back-breaking work it took to accomplish this incredible feet. I’m am beyond thrilled for my mother, friend and partner in art. Become a part of this wonderful thing that is happening. Read the novel, love it and pass it on. Oh…and enjoy. I know I did.

visit my mom’s blog.

Faithful Tears

My mom and I are both creative people.

I’ve always felt and understood that connection between us. As I mastered my skills I admired her ability to use her hands and make “something from nothing”. I see the same expression on my daughter’s face when I make a funny noise and she tries bravely to imitate it or as she carefully pinches an object between her two fingers, somewhat frustrated that it comes to me so easily.

I rarely talk about my faith on this blog. I’m not sure why. I know people will judge either way – if I don’t share, if I do. But today I am choosing to share.

Faith comes in waves. I am often frustrated with this. I get sick of riding the spiritual surfboard. One day I believe. I am one of the faithful. The next I do not – a cynic through and through. Similarly, creativity comes in waves. Days come when it seems that new things are pouring out of you and others arrive that knock you over and life absolutely drains every creative drop from you.

But the similarity is not just coincidence. It is a deep and profound connection. When we are creative we are reassured of God’s existence, of his goodness.

photo by Andrew Vaché

My mom called me yesterday, just too talk. She expressed her frustrations over editing her novel, Solomon’s Puzzle. She also expressed how strange it was to feel such emotion when reading the ending chapter despite the fact that she completed it 2 years ago.

I feel the same way when I finish a really good song. If it’s good, I can’t stop sobbing.

We all do that. How many of us keep crappy little drawings our children make. The bowl our friend made is so much more precious than all the others.

In this way I know that if we am emotionally connected our creations than I know that God must be also. He feels deeply for us and about us. He experiences life’s joys and triumphs, sorrows and depths with us. He must. Because he made us and loves us.

Creativity is as important to me as prayer. In this way I know that I will never stop writing no matter if I am ever successful at it or not. Creativity – the work it takes, the joy that it is – connects us to God.

Oh Dear…sigh

Right now I’m sitting, curled up on our couch, watching a movie I’ve seen a hundred times and eating the biggest bowl of ice cream I could justify.

I just got my hair cut. And this time I didn’t cry. Nope. I didn’t cry. Nope.

My hair dresser was awesome. She knew things about my hair that I had never talked about with anyone only silently hated.

“Have you had those little wisps since you were a girl?”

“Yes?…How did you know that?!”

It was weird. It was like I trusted her. We had a lot in common and when I was done I was thrilled.

I barely glanced and my hair and ran out of the salon bouncing and happy.

Truth is … I looked really cool. But as the day when on and clare rubbed cantaloupe into it my new hair do looked really rough.

I took it from the top to hide the mullet.

Now I have a greasy mullet – business on top…and you guess it…party in the back.

Pinned the party up.

Best part about this hair do is that if I get sick of “the party” I can pin it up and still look a little funky.

Honestly, I don’t know if I like it. It’s not my salvation hair cut. No. But it is fun and totally different than what I would have asked for.

Here’s the plan. I’m going to try it out for the next couple days and see and if I hate it I’m going to just “modify” it myself.

Sigh.

Here’s one from this afternoon.

Clare is making a weird face but ... the hair people.

On Sorrow

My greatest beauty is my honesty. My second greatest beauty is my butt but that disappeared during pregnancy. My third beauty is one that many would disagree with and that is my ability to feel.

Most people would not call it a beauty at all.

I’m a little bit of a loose canon to those who love and know me the best. You never know where I’m going to go or how I’m going to react to something. Some people call this explosive.

“Watch out! Thar’ She BLOWS!”

Don’t get me wrong. It’s not like I’m angry all the time. I’m generally a happy person but I believe that those who feel deeply feel all emotions deeply – happiness, anger and sorrow.

Photo by Andrew Vaché

I make friends easily but I don’t keep them long. I’m not an easy friend. I forget to come to things. I flake out on people. I don’t talk to them for months though they live minutes away. I know some of you are nodding your heads right now in agreement. I know this about myself. I’m not being critical, I’m being honest.

This is not a beauty. It’s a nuisance and I know it.

Photo by Andrew Vaché

When I find a friend that is willing to deal with my flakiness and my over-emoting I am pleasantly surprised. This friend is a true treasure indeed.

It is rare and special and greater nourishment to me than any food.

Photo by Andrew Vaché

This week I am sad, in the truest sense. Sad in the deep and wet and cold way that true sadness really is. I hate that I can’t explain myself.

I’m sad for a friend, for a loss, for not being able to be close. I’m helpless: all I can do is feel deeply for this friend. I can not say anything worthwhile. I can not make a cookie that will take away hurt. I can not write a song that will express the bigness of what I’m feeling.

This blog doesn’t even help.

How I wish I could be with you, friend. How grateful I am for you.

You are not alone.

Wondering

Some of you might be wondering why my blog was inaccessible for the last few days. I guess, at this point, I am wondering too.

I’ve been thinking all about privacy. I’ve been wondering if I am exploiting and exposing my child by writing stories about her and posting pictures of her online, for the whole world to see and also anyone I write about on this here blog.

Do I have the right to expose her (or anyone else) to the world wide web…or should I wait for her to choose this herself? We choose a lot of things for our children – church or no church, public or private school, food choices, the company they keep, the clothes they wear or don’t wear. But is it right to choose this specific thing for her?

So I got to thinking…why do we blog?

I personally love how it has kept a detailed record of our beautiful lives together over the past year and half. I never would have journalized all this by hand. NEVER. I know many of you feel the same way. I love that Clare will be able to go back and read all of this.

I love keeping in touch with people who don’t live very close. My in-laws live about 2 and a half hours away from us and it gives them to hear more stories and see more pictures than they would if we just had rare visits and phone calls.  I love catching up with old friends through their blogs. I love that I don’t have to feel quite so far away as I would. I love that I can read their blog at midnight where I wouldn’t be able to call them.

I love that it gives me a different form of expression. I love that I can write and write and feel free to do so. It gives my muse a chance to breathe and take a break from song writing, which can be emotionally draining. I love that my mother has been writing more frequently than in the past. It has given her writing more exposer as she nears the publishing of her first novel.

But…I fear sometimes that blogs are not a good thing.

They give away a lot of information about our day to day lives that we wouldn’t feel comfortable having perfect strangers know.

They potentially expose our children to dangerous individuals. Of course most harm happens to children by people they know – family.

Is it right to get paid to write your blog? Are we using our families to earn money?

How is blogging any different than writing an editorial in a newspaper?

I fear that blogs form fake friendships, ones that feel real but are not. I often refer to my “Friend” who is really just a person whose blog I read…not a real friend at all. It makes dying friendships seem like they are still valued, meaningful connections.

But, we also support each other through our blogs. We teach each other how to do things – Andrew learned how to make our counter tops out of concrete from a blog. I’ve had very profound personal moments while reading a “friends” blog. They connect us with others with similar problems or joys or whatever.

There is potential for harm in this creative venue. But is there not potential for harm in all parts of our lives?

I married a man that could leave me any second. That would hurt. But I trust that he will not. Clare could be injured or die in any number of ways even if they internet did not exist. Driving in a car is dangerous. Going to the supermarket is dangerous. Taking a bath, in a way, is dangerous.  Yet, is it not my duty as a parent to protect her no matter what – to do anything to keep her safe?

I’m still going to blog. But I would love to know your thoughts on my conundrum.

I’m sorry if I offended anyone. But feel better. I didn’t even give my dad the password…so…no one got to read it. Thank you for reading despite my neurotic and emotional responses to life and it’s oddities.

Easter Surprise

Happy Easter everyone!

I hope you all have plenty of candy and “Bunny Cake”. My piece was delicious.

Oh…and BOOOYA! I finally got a picture of Clare’s teeth.

In other parts of my world: Easter pictures to come.  This kid is just too cute.

To Love Is To Live

Right now, as I sit on my couch and look out on the rain and the quiet grey landscape, I see a couple across the street. They are saying their goodbyes for the day on the sidewalk in front of their house.

I don’t know them. I’ve only said hello in passing a few times but I observe them in their seemingly private moment as they make little plans for the day and kiss goodbye.

I think about the beauty of this moment and I give thanks for it.

Only last week Andrew and I were sitting in our living room, taking deep breaths and preparing to get started on all the different tasks we needed to accomplish that day. He said, “Do you ever feel like your life is just a sequence of events and that you often get caught up in the monotony of it all?”

“Yes.” I replied. “I do.”

And I sat there wondering why. I’m happy. I love my life but I often do the same things every day. I see Andrew go to work every day and why? To provide for us…but only to see us for a couple hours a day.

I responded with some comment about Clare changing every day and growing so much all the time and how that takes away the monotony…but I continued to think about what Andrew had said.

What is the purpose? I felt like a slave to my own humanity. I felt confused.

Day after day slips by and what do I have to show for it?

This weekend I was sitting with Clare on my bed. I had just finished feeding her and I was waiting for a burp and possibly a poo. This is something we do every three hours. But in this moment I realized something. While Clare held my face in her hands and blew a raspberry on my cheek, I understood why we work and why our lives are not just useless toil.

Love.

We are put here to love…that is our highest calling. To love and to do so deeply and every day. The more we love, the more we live.

As so today as I observe my neighbors I am reminded to love in big ways and small.

In other parts of my world: Teething = bad blogger.