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July 2005
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September 2005

Daughter of Mine

I watch you and I worry.  Sometimes your pink cheeks signal what lies ahead. When I see a slight tremor in your hand I know you are fatigued and your body needs fuel.

Frequently, I am urging you to eat and drink. In reply; you begin to raise your voice. There may even be an outburst of anger and tears.   You cry many different tears. Raindrop tears, that trickle down your cheeks like gentle rain runs against a window, Thunderstorm tears that are fast and furious, and the torrential downpour which fall hard and steady.

You raise your voice in anger. I raise my voice in fear and frustration.  I plead with you to drink your milk. You refuse and the outburst continues. I hold you, hug you, coaxing and pleading. Only minutes after you have finished your milk, you say you’re sorry. Sometimes, while you are eating your crackers and cheese, you tell me that you feel better. When it is over, you often tell me that you love me.

I will always love you. You are my daughter and I will never stop. I will never stop looking for doctors who do not roll their eyes at your complex biochemical patterns that define your diagnosed metabolic disease. I will never stop looking- for more ways to improve your health- and better methods to manage your disease. These are my lifelong promises to you.

For today, your charm, your intelligence, even your beauty tells the world you are simply a typical little girl. And if others see you beginning to grow angry and aggressive- they may question your bad behavior. And for now, that’s okay, I choose not to tell them any different.

I don’t tell them we are waiting for the appointment date to test your brain and heart, and that we hope that both will be okay, unlike like your little sister. I may not tell them that a metabolic disease is the basis of your bad behavior.

For just a little while longer, I will hold this close to my heart, with my dreams, my fears, my hopes and my heartache, daughter of mine.

Looking For Rainbows


Zoe was standing right next to me in her walker, balanced and ready to scoot onto the sidewalk. Olivia, her big sister, was alongside her waiting for my signal to go. Turning my back for less than a minute,I grabbed my bag from the passenger seat of the car, shutting and locking the door. And at that moment, I heard it. “Wham!” .

I spun back around to find Zoe , slightly tangled , but unharmed, laying on the ground. She had fallen back on her walker. Olivia’s arms were outstretched beneath her, cushioning her from the hot, hard ground of the cement parking lot. “ I caught her, Mommy” said Olivia . Her voice was slightly shaken but she was grinning. She looked down into Zoe’s surprised face as Zoe reached out her arms for her big sister.

In my kitchen, on the refrigerator, hangs our medicine chart. There are 12 boxes to be checked daily. Twelve times each day that require discipline, patience, organization and a few minutes of prep. I used to be resentful of this chart, the intrusion and hold it had on my life. Until my mother pointed out that maybe I should instead,be thankful. That in the same way I appreciate Zoe’s 7 weekly therapy appointments,  I should be thankful that I can give my children something to help protect them from a progressive disease , to protect Zoe from experiencing more seizures, and protect Olivia from the symptoms of asthma. In that moment with my mother, it changed. And now I am thankful that I can do something to protect my daughters.

The other night, I was busy in the kitchen. My body in perpetual motion, my mind concentrating on the tasks at hand, when my husband called to me from the patio. A storm had just passed- he was outside grilling fish for dinner.“ Come quick” , he said. From the sound of his voice, I thought it might be a passing airplane or something to see in the desert behind our house. “ It’s a rainbow, come here.” He urged. Still distracted by the chores I had set aside, I went. I looked and just barely ,could I see the arc of colors streaking the sky. I went to grab my camera.

Later in the late night quiet , I studied the image of that rainbow on my computer screen. Just faintly, you can see the rainbow against the backdrop of the desert sky. I was thinking about Zoe’s fall, the conversation with my mother, the letter I had to write to Olivia’s school about her illness, the conversations about new tests and doctors appointments for Zoe.

I remembered then, something I once read about rainbows. How they only come out after the rain, and you have to be watching for them. That you have to be looking up, searching the sky.. because they are only visible for a short while.

I realized then… The moment I saw Zoe reach for her sister after her fall, the conversation with my mother, listening to her gentle reminder.. Both of these instances….. were like a rainbow.

A treasure, that I might have easily missed….. had I not been looking.

You And Me Against the World

Thewedding_1 " Look around you, everything as you see it now, from this day forward.. will be different"

We stood on an old stone patio in a courtyard filled with flowering shrubs. These were the words the pastor said ,before my husband and I exchanged our wedding vows ,almost six years ago.

The stone courtyards of this rustic italian restaurant brought me back to that moment .. Although we sat here , indulging in rare luxuries.. A Saturday night babysitter, an elegant meal in a beautiful restaurant, excellent wine...There was no doubt in my mind, things were very different

Looking at him, he looked very much unchanged. Still energetic, wise, passionate about life. I wondered then, what he saw, looking back at me. So I asked him, beginning with.." I am so different now, are you disappointed?" Surprised, he questioned my use of the word disappointed

" How could you say that" he asked. " Your the love of my life" I know.. I assured him. " But you don't get it " he said.

I went on... The used-to-be's..Before I was successful, I was focused, relaxed, interesting.. I had intelligent things to say, I could start and finish a business discussion with ease... and I went on. " I have never felt more challenged than I do now, I said. I just wondered...

" You are an excellent mother, you are many great things.... but you are the love of my life. You told me once, something.. the most powerful thing anyone has ever said to me, in my life. Do you remember?" he asked.

My eyes held his as I took a sip of wine. waiting. He said " You and Me against the world, you told me once. That was so powerful, so meaningful".

And at that moment I felt like my old self again . " You and Me against the world", I agreed.

There isn't anyone else in this world, that I would choose, but him.