And yet it begins...

After Emma was born and almost immediately diagnosed with Down syndrome, I had nightmares for months. Horrible, horrible dreams that would leave me feeling frightened and helpless as I would wake up in a cold sweat with tears running down my cheek.
The worst one was one that referenced my own childhood. When I was in the second grade I moved out of state thus changing school districts. The district I came from had recently instituted a new teaching method regarding reading; students were taught to sound out the first syllable and the last, then were required to deduce the word based on the context of the sentence. Phonics became a four letter word and that year, my teachers failed me miserably; the school failed all of us. Period. Regardless of the fact that the method was repealed the year after I left, it had still had enough time to do damage. My new school knew it too.

I was immediately enrolled in Title One for reading, which was a special education class. It was very successful and after mere months I was discharged from the class. I would continue to be accepted into enriched reading classes and eventually gifted English programs.

But, at the time, it was not cool.

Not at all. I dreaded it every day. It wasn't the class itself I despised, which was actually pretty fun, it was the social stigma of the "special ed" class that I loathed - even in the second grade. Invariably each day our main class would split into groups during the reading period and that was the beginning of the end, for me. For some horrid reason known only by the grace of the gods, the powers that be saw fit to label the groups as such - the "gold" group, the "silver" group, and the "brown" group. Go ahead, guess which group was which.

Turns out, Brown did do alot for me, but it didn't change the fact that getting to brown was the definition of childhood trauma.

Every time the brown group was called, the entire class would titter and jeer as mocking whispers slipped out under their breath. They barely, just barely, stopped short of pointing at me and tripping me as I walked by. I quickly learned to avert my eyes and stare at the floor as I prayed for my burning cheeks to return to their usual, unremarkable color. Those burning cheeks fed the fire around me; as soon as my cheeks lit up, my peers knew that their jeering mattered.

And, to make matters worse, the brown group was the only group which was removed from the class.

The older I get, the worse time ravages my memory and the more poetic license my memories seems to take upon themselves. Sometimes I am not positive if an event really happened to me, or if I read it in a book (a pitfall of being a childhood bookworm, I guess). In retrospect, I am sure that we didn't really have our "brown" class in a dingy and crowed coat closet in the basement, but that is how I remember it. That is just how traumatic the entire ordeal was, one in which I slipped into the role of an undeniable social outcast. A social outcast at the ripe old age of seven.

Well...it turned out that in the deepest recesses of my own questionable psyche, this was one of my most profound fears for Emma. And for us. For all of us. Beneath the surface my fear that Emma wouldn't be accepted, and worse that she would be mocked, raged. I saw a future inwhich my family would be the punchline of society's greatest jokes; never allowed to tell the joke, never able to laugh with the jokesters, but always hearing the laughter.

Never finding camaraderie anywhere but within our own family.

I realized how deep seeded those fears were when I began dreaming about them. At night there wasn't any place for me to hide from them. During the restless slumber of those first few months, my subconscious grappled with what my conscious self could only cry about. I was my very most vulnerable then.

My dreamtime life climaxed with a nightmare that may sound innocuous to some; humorous to others, and definitely not frightening to most, but for me it was terrifying. I dreamt that I took baby Emma with me to our local public library, the bastion of learning and the possessor of the great knowledge that it is. I always loved libraries as a child and in my dream, I was so excited to share this world of possibilities with her. But when we arrived, we were refused entrance, barred from opening the door. The resource librarian met us there as we futilely tried to gain admittance, and with a violent fervor she redeemed my library card. She shredded it before my very eyes, and without mercy told me that we were no longer allowed in the public library. Our family membership had been revoked, and from then forward, we were only allowed in the Brown library.
Pretty much says it all, eh?

A few weeks later I had another dream about Emma. I dreamt that I was still pregnant with her, but this time we knew she had an extra chromosome. My dream self was very anxious about her birth; so worried that there would be a problem. I was terrified that we made the wrong choice to bring her into the world and that she wouldn't be okay. That we wouldn't be okay. In my surreal dreamworld, my husband kept assuring me that she would be fine; that we made the best choice ever.

As the dream continued she was finally born, but instead of my Emma, the baby that was born was somebody else. He was the most beautiful blond little baby boy; the most perfect infant ever. An elusive vision of perfection, this baby still visits me in my dreams to this day, but he most certainly was not Emma. He did not have slanted eyes or a broad face; his chromosomes were just as perfect as his Aryan coloring.

The delivery room was ripe with oohing and awing over the new baby. With disbelief I realized that I was the only one who realized that this baby boy, the vision of perfection, wasn't the baby I was supposed to have. Nobody else realized that this was the wrong baby. Not my child. He was lovely, but he wasn't Emma...not even one bit. He wasn't the baby I wanted nor the one I needed, and my baby was missing. Gone. Poof.

I forced myself awake as I didn't want to be in this dream any more. I woke violently and in a fierce panic. The loss and sorrow I felt was overwhelming. There were tears dripping from my eyelashes.

It took a few minutes for me to remember myself; to remember my life. I looked over at my lovely and amazing Emma Jayne, sleeping so peacefully in her bassinet, and my relief was just as overwhelming as my panic had been. Of course I inappropriately woke her up as I covered her in kisses and embraced her with my love.

After a moment of reflection, I realized that my dream signified not just my evolving acceptance of Emma's diagnosis, but also my emerging celebration of her very essence. My sorrow at discovering a perfect blond baby in her stead symbolized the beginning of the end of my grieving...I was no longer holding Shiva for the baby I didn't have. I had finally seen the baby I did have. And I loved her. So. Much.

When Gabe was born, I stopped having nightmares after his surgery. I didn't have to grapple with his diagnosis like I did with Emma's, because his could be fixed. Of course I knew there could be complications and that he would always be carefully watched, but his diagnosis didn't challenge everything I thought I knew about the value of a lifetime. His diagnosis didn't represent a shift in our familial paradigm; it was a mechanical problem that could be rectified. While the memory would always haunt us, the result would be an ordinary life...or at least, our ordinary. Given time he could adjust to us, we wouldn't have to adjust to him. Gabe would heal and we would resume life as we knew it. This chapter would close and we wouldn't have to write a new one as we did with Emma.

I now fear that may change.

With Gabe's upcoming surgery it is painfully obvious that a second chapter is being written and, regardless of whether I want to read it or not, I have to. It is not over.

Though this surgery should "fix" this problem, I have to recognize that it may never be "over". Every heart is unique and so is every heart defect. Gabe's defects (I couldn't despise that phrase more) are "non-issues" now, but we are all at the mercy of Father Time and whatever whim he may have, is a whim we have to live. So far Gabe has been very healthy, even in light of his never ending cootie train and chest cold caboose. He isn't on any medications and doesn't have any restrictions...so far he seems just like any other baby, in spite of his medical history. But he isn't just like any other baby (we don't have those kinds of babies anyway). No matter how much I want him to be.

The possibility of a hospital life is lurking around the corner. Along with the countdown clock. The door to that life is opening as we speak and this surgery will swing it in either direction. Now that, that is hard for me to accept. That I am grappling with.

Last night I had a nightmare. A vivid, pulsating, silent scream, heart thumper of a nightmare.

We were at the hospital the night before Gabe's surgery. We were, amazingly, completely relaxed. We didn't think it was a big deal at all. We were socializing with friends at the hospital...that is how unaffected we were by the impending patch surgery.

As I chatted effortlessly away, K went to check with Dr. G (who interestingly was a woman) on his pre-surgery checkup. When K came back he told me that Dr. G. wasn't sure they would do the surgery tomorrow...maybe not at all. She thought they may have to do the Switch again; that it could be failing. That he repair was failing and we would have to start all over again, from the beginning. We would have to wait while they decided.

I woke up feeling terrified and utterly helpless. Tears streaming down my face, my heart pounding. I had to catch my breath and wait for my memory to flood back and comfort me. Except, it isn't all that comforting right now.

And with that dream, it begins.