a light in the dark

(I wanted to share my entry for Gifts Volume II, the Awareness chapter, just in case it isn't chosen for the publication. It is long - of course LOL! If you slip on something while reading this, it may have been my heart, fallen off my sleeve. Sorry! ^_^)

I sometimes look back at my life before Down syndrome - myself before Down syndrome – and feel as if I have tiptoed through the hedges around someone else’s house and am peering into the life of another woman. Reading through a diary entry from my pregnancy last year, I find myself glancing over my shoulder with trepidation, certain the true owner will come upon me and my nosiness at any moment. I feel as an outsider looking in on a hollow shell of a person. Surely, that person was not me; is not me.

As I close the diary or stop the memory projector in my mind, I am confronted again with what a change the last 8 months has brought about. Really, the word Change falls short of the mark. Down syndrome was a splintering, shattering, mind-blowing, life-ending, life-beginning force of nature I was wholly unprepared for and wholly missing out on. For a few moments it was the worst thing that ever happened to me; for the rest of my life it will be the one thing that was able to wrest me from a self-inflicted darkness I didn’t even know surrounded me.

Humans are emotional creatures but for the most part we have learned to separate ourselves from those emotions. We are never far from them but instead of living with them we walk along on parallel paths, the roads curving together at times before diverging again and again. We all know those moments of connection. A poignant story, an inspiring film, a news report of a tragic event – in those moments of enlightenment our spirits pitch toward one another for a few minutes, a few hours, perhaps a few days. And in those times we feel such a swell of emotion it seems perhaps the underlying meaning of our existence on this earth is just beyond our fingertips, waiting to be grasped. It is those moments where we find our true selves – loving, generous, filled with compassion and light.

Unfortunately, the moments pass. The brief glimpse into the best qualities in ourselves ends and we move on with our daily lives and irritations, swallowed up in our preoccupation with little things, walking in a haze of isolation – head down, hands in pockets, purposeful stride that stops for nothing, for no one. We remain in this darkness until the next illuminating novel or TV miniseries or school fundraiser, matches being tossed in the dark, burning out before they hit the ground.

Loving someone with something special, something beyond the usual, something like Down syndrome, it is to take a match to the ceiling and set it aflame, to live in these moments every minute of every day.

It took me some time to reach that realization and appreciate it; before I could embrace the best qualities in myself I had to battle the worst. Having Dawson made me challenge everything I valued, especially the value I placed on the lives of others. Before Dawson I had resigned myself to the darkness because I had come to believe it was the biggest part of human nature. I believed people were inherently selfish, uncaring, often cruel and rarely able to change. But the nature of a mother is to love. In those few weeks after Dawson’s birth and diagnosis, I sometimes felt I was a spectator at the greatest boxing match in history – my own fears, prejudices and ego versus a simple mother’s love.

In the end, love wins. It usually does.

It’s that fact that tore my life apart and wove it back together into something more beautiful than I could have ever designed alone. To find yourself between fear and love is to gain access to the greatest ongoing struggle of humankind. To feel love win every day for the rest of your life is to always remember that beneath it all, beneath the angry drivers, the bullies on the playground, the disdainful, the hateful, the crime, the war, the lack of compassion… is still just love. And it is always waiting for the moment to rise up and win.

Love challenges our perceptions of what makes a life worthwhile. Before Dawson I hoped for the usual victories for my children. I found value in good grades, college education and a high-paying career. Worth was in a stable family, a nice house filled with nice things and the occasional vacation. I kept a journal of milestones, secretly pleased when they were reached early according to some man-made timetable because I felt perhaps my children would have an easier time reaching all of the goals I set for their lives.

Now my hopes are much simpler – for each of my children to be happy and perhaps for their existence to make happier the life of another. I no longer care about milestones – they are illusive and meaningless – after all, what does it matter when a child walks or if they even walk at all? You need not move a muscle to find and give happiness.

Dawson is not quite 9 months old and he has already fulfilled my greatest dreams for him, and more. He is not quite 9 months old and his existence has already saved the life of another human being. What more could I possibly wish for him?

Five days after receiving Dawson’s diagnosis I was swimming in blackness and not sure how I would ever pull myself out. Five weeks after his diagnosis I was beginning to lift my head and rub my eyes and realize it was only dark because I’d had them closed. Five months after the diagnosis I was sending an email committing to adopt a baby girl in Serbia, four months older than Dawson and also carrying the diagnosis of Down syndrome and the additional diagnosis of a major heart defect.

If there is a gene for hope, it is on the 21st chromosome.

The journey of adopting a child with Down syndrome has only deepened my awareness of love. How can someone remain skeptic of the kindness in others when they see families travel to the ends of the earth to bring home a child that no one wants, a child that will be shut away in an institution, unloved and likely facing an early death? These families are the finest example of how much more can be accomplished if you let a little light into the room. We will make our own journey across the ocean just a few weeks from now and bring back one more victory for love.

Dawson’s arrival broke down walls I spent years building around my heart. Emerson’s adoption has flung it wide open. Some people wonder why we would want to have not one but two children with Down syndrome. Dawson was a surprise. Emerson was a choice. Some people wonder if we appreciate children with Down syndrome more than typical kids. Those people are usually still shuffling around the room, arms outstretched, stubbing toes in the dark.

Every one of my children is a light. They each burn beautifully on their own. But Dawson and Emerson’s lights are a bit different. They are lights that illuminate the darkest corners of our existence, lights by which all other flames burn brighter. They are lights that cartwheel gleefully into our hands, demanding that we open our eyes, our hearts, and at last shake off the darkness in ourselves.