My Own Demons

When Emma was about a year and a half I had a dream, a nightmare of a dream really; one that will stay with me forever.

I don't know about your nighttime escapades, but my dreamworld is a vivid world of (all too obvious) metaphor that dance across my pillow at night, ensnaring me in its web of never ending weirdness. It is a world that I have a hard time waking from and an even harder time shaking off. I can't shake it off because my Freudian dreamworld has the ability to provide my conscious self with insights that, apparently, my waking self would prefer to leave unsaid.

Stupid waking self.

Always getting me into trouble.

Years later the memory of the dream is faded and the details have blurred, but the sense of horror remains. The terror tore my tired body from sleep with a sense of urgency as if it were screaming "Don't forget me!". I woke up with tears streaming down my face, wrapped in sweat soaked blankets and with the realization that I needed to face some of my own demons...and soon.

I had always been proud of Emma's long flowing locks and, as odd as it may sound, her lovely round head. By the time she was just a year old her locks were already remarkable...especially for such a young child. They flowed to her shoulders by the the time she was a mere eighteen months old, silky and smooth, the color of wheat in the shade. Her head, as tiny as it was (and as it still is - you should see that growth chart; it's like a fall from a cliff) was perfectly circular, undaunted by sleeping on her back (which can create a bit of a lopsided head. You can read all about it in the newest parenting books. I kid you not). As her hair grew and thickened I would read of the oft quoted physical characteristics of Down syndrome, of which Emma had, and has, many. The two glaring absences were that of a flattened backside to her head and thin hair.

When Emma was a newborn I clung to those absent characteristics as though they foretold of a future for Emma that I feared less as I learned to accept the shape of her eyes, her foreshortened arms, her low set ears, and the extra skin on the back of her neck. Her neck fat dissipated by the time she was a few months old, and before long I found myself falling in love with the shape of her eyes and their brilliant color; her ears that showcased her pretty barrettes, and her chubby little hands that sat at the end of arms I no longer thought of as short.

Yet as Emma grew more beautiful by the day, I still clung like a mother bear with the force of a full set of claws to her typical traits; not realizing how tightly I was holding on. By the time that Emma turned one, I was fully in the throws of the Milestone Game. I insisted that Emma's extra chromosome wasn't nearly as a big of a deal as everyone made it out to be (which is still true...sometimes...in some ways) and that we would show the world how inherently unlimited and enabled Emma was (and still is). Emma was to be a WonderBabe that not only we couldn't deny, but one whose prowess couldn't be denied by the rest of the world either.

When it became obvious that she was struggling to climb back onto the dreaded milestone chart instead of soaring amongst it's peaks, I still believed, deeply, that while she was unique in every way, she wasn't truly different from other children. Or maybe a better way to put it is that her minute differences could be overcome; negated by all of her similarities - everyone could see that, couldn't they? Even better yet our life wasn't really affected by her extra chromosome; it wasn't all that different at all. We weren't all that different. And today, in many ways, that is still true.

And then I had the dream.

I am with Emma, feeling so proud indeed of her beauty and charm. I grab a nearby brush and begin combing her flowing locks when much to my utter horror, her hair comes right off with the brush. I pick up her fallen hair and realize that it is a wig. A long beautiful wig, but not a part of my Emma. I look at my lovely little girl and I can see now that all she has is just a few whisps of hair sticking out of her flat and misshapen head.

And she is crying.

In the dream I am horrified. I am disgusted, but not because Emma doesn't have any hair and the back of her head is flat as a board (as in you could play chess on it); I am horrified because I realize that she never had long flowing locks and a perfectly shaped head at all; all along it has been a wig. A wig I made her wear so the world would think her head was just like everybody elses, except, of course, more beautiful. I realize that I have forced her to cover herself for her entire life with the disguise of being somebody else.

And she is crying.

And I know I have failed her more than I ever thought possible. The guilt I feel is as overwhelming as the sadness I feel as I watch her cry.

I wish I could take it all back.

I throw away the wig and try to comfort her.

This is what woke me in the middle of the night, gasping for air and trying to remember who I was and the reality of my life. When the real world came flooding back and I remembered that Emma's lovely locks were real (or more poignantly that I hadn't been forcing my baby to wear a wig for the entirety of her existence), my relief washed through my entire body like a wave drowning away the terror of my nightmare and comforting my pounding heart.

Kinda.

That, that was my dream.

It was in that moment that I realized how precarious the path I walk with Emma can be. As her mother, her greatest advocate, and her biggest fan (though, in all honesty, I'm not the only one to lay claim to that status) I have to always remember to see her for her, in every single way. Her uniqueness, while certainly not bad, is different and can't, nor should it, be hidden away. She should be celebrated, not merely accepted, and in order to do that I have to always be honest about who she is. To deny the challenges that her extra chromosome present is to ignore the joys that wouldn't be possible without her little bit of extra. While I don't want to lower my expectations because she has Down syndrome, I also don't want to hold her accountable to unrealistic expectations that would eventually make her feel like a failure.

Ultimately her life should be about her expectations, not mine.

Life is hard enough as is it without tagging a child with that kind of baggage; especially my child. Because I love her. So. Much.

I desperately want Emma to be proud of who she is, in every way. She will never be able to do that if she sees me hide who she is under a wig of "normalcy", tucking her differences away so they only come out under the covers while I sleep. That is just as dangerous as the opposite - assigning her deficiency before she has even begun.

It is Emma who will determine her fate; it is her story to make. I may tell it, but it is she who writes it.

And every day I am making my fate; writing my own story, but always remembering the power my pen can have over hers.

Indeed freaky Dream O' Past, I will never forget. And if by chance my memory slips a little and somehow that nightmare isn't always just under the surface every time I slip into my old competitive ways, I know that you'll come back and remind me. And it won't be pretty.

Nor should it be.