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May 2005
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July 2005

Changed by a Child


Those Carefree Days…

After Zoe’s first birthday, somewhere during her second year, my life changed.

I saw my child struggling and I was searching for answers. For most of that year, I was relentlessly pursuing research, physician’s opinions and professional evaluations. Eventually I traveled across the country and returned home with a diagnosis and a plan- and some peace- with those answers came a great deal of peace. But from then on, I was never really the same.

My life plan was altered, and my priorities shifted. I am happy, in my own way and decidedly blessed, however things are much more complicated.

As we enter into motherhood- we sometimes sadly say goodbye to many of the carefree freedoms of being a childless couple. Margarita night becomes impossible when caring for a toddler who wakes through the night. Lazy afternoons in the sun, or romantic quiet dinners with your husband require advance planning, and childcare…. but that’s okay,. Motherhood is rewarding and the occasional splurge or indulgence of time alone can still be thrilling.

Moments when you can be carefree and fun, and live in the past, just a little….Times when you can let your hair down with a friend, relax a little. Fill the tub with bubbles and rejuvenate.

But even with strategic planning, I just can’t seem to get there. Although I am happy and greet every day with optimism- things no longer seem carefree and simple to me. I envy my friends who lead simple, carefree lives without complication. Or at least that is my perception of their lives. I celebrate with them and share their happiness- but I feel alone with my own thoughts, in my very different life.

I remember when life was so simple. When I was more of a carefree spirit. When the sun warming my skin was enough to soothe my soul and when I could wander the produce aisles at the store, thinking only of about dinner and the evening ahead. When I spent more time, listening, laughing and loving…

Although I may not laugh as often, I am a better person in many other ways. Like many other mothers, I am changed by a child.

The Language of Love

Watching her face, I anticipate the beginning vocal sound of the word I want to hear. Sometimes her mouth remains still, unwilling. Searching her eyes, I wait patiently for understanding.

No matter what my child’s language limitation may be, I respect her receptive ability. She may not understand the meaning of all of my words, but she can use her senses . To hear- the soothing tone of my voice, to see-my gentle smile of encouragement as I speak ,to feel- the warmth of my touch.

These things are a language she knows. In her mind, she may not only understand, but speak a language of her very own- understanding the language of love.

I Made This Baby....

Every mother has this moment. The first moment of awe usually comes when the pink bundle of wrinkled, soft skin is placed in your arms. As you gaze into your baby's eyes for the first time, you are thinking... I made this baby. These awe filled moments continue as you watch your child grow.

For me these moments come at quiet times. Unexpectantly when suddenly the perpetual motion of young childhood may pause and you find your child sitting still in your lap or curled up on the couch asleep. For me these moments are filled with great introspection.

I review my own checklist of good mothering.. Am I meeting her needs? Is she happy? Stimulated? Flourishing? When I look to Olivia at these moments I ask myself-Am I giving her enough attention, balancing her needs with those of her sister's?  I marvel at her beauty, her intellect, her spirit. And then, I thank God that Olivia is healthy. That she isn't affected by the same disease that has shaped her younger sister's development, and that she is able to teach her sister all that she can.

But that has changed now and my thoughts are suddenly different. They are deep and dramatic and so maternal that unless you are a mother, you may not even understand.

Recent changes with Olivia led me to have her tested for the genetic disease, mitochondrial disease, that affects her sister Zoe. The tests were definitive. Olivia has mitochondrial disease too. This means that her body's ability to produce energy is impaired. More tests are pending, but at this point we assume that she is most likely mildly affected compared to the severity of her sisters issues.

I now, am so curious about other mothers of children affected by genetic diseases. I wonder if their awe filled moments shift from time to time, as mine do. If they ever have these flashes when they look at their children- affected in different ways at different times- and feel pain. That deep, maternal ache when you realize that your child's life may be changed or threatened. That your child may experience physical pain or discomfort sometime in their life. That this child has not only inherited from you the color of their eyes, hair and the shape of their body, but also a disease that may cause them harm. A disease their children may inherit. A disease you knew nothing about.

Now, when those quiet awe-filled moments occur as I look at that child of mine. I still find happiness and thanksgiving, but there is also something new. A sliver of guilt. As a mother it is instinctive to protect my child from harm. But the burden of a genetic disease is great. I hold my child and I think... I made this baby.

Simple Celebrations

My heart hurts-and it has been for a few weeks now. Every day it heals a bit. And every day I find happiness. Sometimes, I find the happiness in the simplest of things.

Tonight at bedtime, Zoe's tiny hands found my chin in the dark. Taking my chin,she turned my face gently as she placed a soft kiss on each cheek. She finished with her rosebud lips on mine. Sheer happiness.

This morning I was nudged awake by my four year old, Olivia . Her persuasion was brilliant .“ Mommy.. .“ She persisted.."Mommy..It’s time to wake up. Daddy made the coffee and it’s ready for you.” It was 6:30, and I had only been in a deep sleep a few hours. I giggled first, and then I got vertical. There was good coffee and family waiting. There would be time in the pool after breakfast- time to be spent making memories.

Friday night, my husband and I celebrated the weekend – and our time to come together as a family. No therapy sessions, no appointments, little work – and mostly fun. We begin our weekend with a great dinner, a nice bottle of wine- we make a wonderful meal with fresh ingredients from our own kitchen. This is how we like to celebrate and this makes me happy.

Yesterday, Saturday morning was different. I lay in bed-anticipating a trip to the lab , more blood tests for Zoe. I attempted to count how many times we have experienced the needle sticks- I stopped counting at 20 something. She is only three- and each time it still hurts a little. Each time changes my perspective.

So that is what I struggle with- my perspective. I am lucky and I am blessed. I believe this.We are together as a family- and we are happy. We are however living with a real threat- a real disease .And every morning when I awake , my heart hurts a little with this reality. But each day, I vow to seek the simple celebrations.Celebrations of beauty- like the quiet of the morning, an occasional cup of coffee on the patio taking in the flowers and the scenes of the desert morning. Celebrations of love- snuggles, hugs and kisses- and celebration of family… making memories.