I am

Who am I?

I am a woman, a wife, a mother, an employee, a lover, a friend. I am a Virgo, a homeowner, a consumer, an accountant. I am a pet owner, a housekeeper, a caretaker. I am a writer, an artist, a voyeur. I am a liberal, a leftist, a conservative, a radical. I am a literalist and an interpreter.

I am a feminist, a modern woman, a high heel and pair of stockings. I am unshaven legs and lipstick. I am the epitome of emotion and the definition of rationality.

I am a giant belly laugh, a witty smile, and a tear running down my face. I am brazen, yet fearful; strong, yet weak. I am happy yet frustrated, fulfilled yet striving. I am wise and knowledgeable yet naïve and ignorant.

I am a walking contradiction. I defy logic.

I am a woman who is struggling against the labels that society has assigned to me and trying to reconcile those with the ones I ascribe to myself. I am a woman on an eternal shopping spree for meaning and definition. Sometimes I rent, sometimes I buy, and sometimes I return the labels and adjectives in my life.

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Most recently I am the mother of two children with special needs. My daughter, a delightful toddler, has Down syndrome and my infant son was born with a very serious heart defect that was repaired just after he entered this life. I am a woman whose only two children were both born with what are considered to be birth defects – an extra chromosome and a malformed heart.

I am a woman trying to balance my gratitude for the health and well being of my children against my fears for their futures. I am a woman trying to balance my awe for their beauty and my amazement at their accomplishments against my anger that they have had to struggle.

I am a woman whom was grateful that my baby daughter didn’t have a heart defect when she was virtually expected to…I was a woman whom was too grateful. Now I am a woman whom is tormented by wondering if my immense relief and self congratulation was just too tempting for the fates to leave alone; that they couldn’t resist sewing their ironic thread through our destiny as they wove my son’s birth on our family loom.

I am a woman still coping with the shock of my son’s diagnosis. I am only just now able to reach into my heart and touch some of those emotions; emotions I had to tuck away in the darkness of my soul for tomorrow while I dealt with the crisis of today. Those were feelings I was afraid would swallow me whole if I allowed them to see the light of day, and now their day of reckoning has arrived.

I am a woman who feels victimized by circumstance yet at the same time I am a woman who feels blessed by good fortune.

I am a woman that is probably pitied by strangers and whose strength is exaggerated by those that lead different lives.

I am a woman haunted by the tick tock of the clock, the constant reminder of how short my days are and how much needs to be done.

I am a woman who often just wants to cuddle with my lovely and amazing family and let the world pass us by, yet I allow myself to get so caught up in the mundane tasks of daily life that the moment can slip through my own fingers until its gone.

I am a woman whom loves life but sometimes forgets the adventure it should be.

I am a woman struggling to find myself yet trying not to forget myself either.

But most importantly I am me and I love me. I may not know who that always is as I wade through the labels of lifetime, trying them on like accessories for my soul; rejecting those that are just too expensive and finding perfect matches at the same time. My window shopping would just be so much easier if I could separate what I want to buy from what has already been purchased for me, but this, then, is just another life struggle…and it’s a good struggle. The struggle of self-evolution is never ending and I know that the moment I am able to define myself in one sentence is a life ending moment. Once I have stopped growing, I will begin to die.

For now I continue to shop around always wearing my favorite items on my sleeve …my husband, my children, my love, my truth, and, of course, the fullness of me.

Now…who are you?

What do you wear?

docile i am not

Aaron was chosen as one of the three kids to be on a Down syndrome awareness bus ad this fall. His photo shoot was last night.

The two other children there were little girls, who obediently obeyed every single thing the photographer said to them.

They were picture perfect little models, posing and hugging and smiling.

There were bright lights, a lot of people, and noise. Aaron sat cooperatively in the chair beside the little girls for about 15 seconds. Then one of the girls bonked heads with him.
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Then he was done with the blasted photo shoot. For the next hour, he laid on the ground and wailed, picked his nose, ate the contents of his nose, screamed when a little girl came near him, yelled 'Mom! Mom!' when the photographer tried to adjust his position, ran around looking for the door, stuck his hands down his pants, sat with his tongue hanging out and kicked a hole in the background paper.

The picture you see above may be the best photograph taken of Aaron all night.

Thank god for the magic of cut and paste and Photoshop.

Aaron's part for Down syndrome awareness is making us aware that kids with Down syndrome aren't all docile. Many people with Down syndrome are super high energy and all have very distinct minds of their own.

End of Summer

by Jennifer Graf Groneberg

There are signs that the seasons are turning: the midday sun is weaker on my face, the nights are chilly, a frenzy of squirrels cracks open pine cones all hours of the day and night. The leaves on the aspens are beginning to yellow. My garden has gone to seed. But none of these things tell me summer is over as much as the empty slot in the freezer door—the last box of Popsicles is gone.

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As usual, this summer was too much. Days that at once felt too long and too short. Birthdays (three), summer parties (two), afternoons at the lake (too many to name). And firsts: first bee sting (Bennett), first case of swimmer’s itch (Carter). All these things, so much to count, and yet I will remember this summer for what didn’t happen. I will remember it for what is missing.

Avery is still not walking.

I see other children with Down syndrome walk, even run, and I am taken aback. How is it that they do that? I realize that my amazement means I have given up on it, for us. At some point during these three years of trying, and waiting, and not-knowing, and worrying, I simply let go of it. My boy, who loves to be carried. My boy, full of hugs. My boy, near his mama. My boy who will not walk.

This summer he was fitted for braces. A thousand dollars, a thousand wishes. And still more places I didn’t think we’d go—to the Shriner’s, an organization that for my whole life meant nothing more to me than men in red fezzes riding around in little cars on parade days. Now, they mean aid. A place for assistance. Help. I don’t know how much I want Avery to walk until I feel the weight of it, the heaviness of him in my arms. I can not do it for him. I can not make it happen. I can’t do anything but hope, which feels like such a small thing. It might not be enough.

We practice taking steps over and over. Steps in my arms until my back is aching. Steps holding hands. Steps, and he stumbles. One definition of insanity is to do the same thing over and over again, each time expecting a different outcome. It is the shape of this summer’s days. Over and over, always expecting it to be different. Which is also, I have come to see, the meaning of hope.

The Popsicles are gone from the freezer. Time to turn toward the next season, with its Butternut Soup and braids of wheat bread. I think of kneading the dough, like I knead Avery’s muscles each night after his bath. Kneading, kneading. Hoping. Trying to find my faith in things like patience and repetition. Love. Time. All the right conditions. Trusting that like the loaves of bread, my son will rise.

submitted by Jennifer Graf Groneberg

Jennifer writes a column, Off the Beaten Path, for mamazine. She can also be found at jennifergrafgroneberg.com