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I Was Here

September 20, 2012

You will notice me
I’ll be leaving my mark like initials carved
In an old oak tree, you wait and see……..

I wanna do something that matters, say something different
Something that sets the whole world on its ear
I wanna do something better with the time I’ve been given
I wanna try to touch a few hearts in this life
Leave nothing less than something that says I was here.

And I know that I, I will do more than just pass through this life
I’ll leave nothing less than something that says I was here.
I was here

~Lady Antebellum

No one wants to be told that the time they have with their child may be short. To lose a child is the most difficult experience I can imagine. I have friends who have lived through that tragedy, and I have other friends who fear that they too will outlive their child.

But possibly just as heartbreaking is the thought that child might not be remembered – that their time here would go unnoticed. The idea that these children lived their lives separate from everyone else, and never really go the chance to leave something meaningful here before they left. It is a fear shared by parents of many special needs children. Although it is a shared feeling, it can be an impenetrable wall of loneliness.

An insidious thought has been creeping into my mind lately. If I were to lose Mary today, would the world be any different? Would anyone really notice she was gone? She is so young. She has no real friends, no real social relationships. Would anyone really care? Would anyone remember her for who she is in ten years, or would they just remember that poor family that lost their baby? Would that change if she lived into adulthood? The autism, the deafness, the apraxia- they are all so isolating. Will she ever find her village?

There is a banner in the front of my son’s school, welcoming back a classmate who just returned from an extended absence due to an illness. It is signed by every child in the school. It is beautiful. The simple idea that this child was missed during his absence and welcomed back joyously by the entire school causes my heart to leap for his family. But it stings when I look down from that banner to my own baby girl humming on the hallway floor waiting to pick up her sister from preschool there. It seems unlikely to me that she will ever know that kind of support and acceptance from a school. Especially now, when it seems like she will be bounced around from one specialized facility to the next, never really cementing the kind of comeradry that other school children share. The clear difference is that this, admittedly older, child can speak, play and form friendships. He can express to his parents, teachers and friends, what he is thinking. He can communicate with and therefore connect with other people. My child cannot. And so she and we remain isolated.

We are alone. With no diagnosis, no school, no village, and no clear path, we journey alone.
~ Doors.

The isolation that comes with parenting a special needs child only seems to compound the enormous amount of loneliness in the grief that surrounds the loss of that child. We all want for our children to make their mark in this world – to matter, to be part of something bigger than just one life. Sometimes, as a parent, we are simply too close to see how much our child is part of something – that they do matter to someone outside of the small circle of love in which we carefully protect them.

Sometimes a life is like a ripple in the water. I am now just beginning to understand that our children’s lives are like this. By their very presence and the spirit they show to their siblings, they can change lives. I know that Joyce and Troy are better people just for knowing their baby sister. I know that they have learned so much more about love, strength, compassion and faith in the few short years that they have known Mary than I could have ever taught them in a lifetime. And they share that, every day, with every person that they meet. She gives them the gift of her beautiful spirit each day. They take that incredible spirit with them out into the world, and I know that they will grow to be amazing compassionate people, in large part because of their sister. Their friends have met Mary as well, and it is virtually impossible to meet her and not smile. She has a grace about her that is simply infectious. She crawls into their hearts and carves out a place for herself. You will notice her, and you will not be able to forget her.

There are the children that have been lost. The ones who never got the chance to grow up. They may have lived much of their lives sheltered under the nurturing and protective wing of their mothers. The worries of anonymity echo in the words and hearts of their parents. There is a desperation to hold onto those memories, for their child’s life to have meaning to someone outside.

I don’t pretend to know what it is like to lose a child. I truly do not know if it is a loss that I could survive. I know women who have buried their children. I know the fear – the same fear that has brought me to my knees more than a few times. But I learn from these women. I learn about treasuring the time that we have right now. I learn about enjoying the very small things, because in reality, those very small things really are the big things. I learn about courage from them. I learn about faith. I learn about love. If it had not been for their babies, they would not be able to teach these things to others with such clarity. If they had not known the incredible, fierce kind of love that comes from parenting a special child, they would not have been able to inspire courage in the hearts of other special needs mothers in such a purposeful way.

In many cases I have not met their child, but I have heard their stories. I have in some small way been blessed with a glimpse into lives lived completely in love. In some cases, like here in the blogosphere, I have not even met these women. But their child’s life has had meaning in my own, and I am certain in many other people’s as well. In sharing their story, their child’s life has, in some way, affected my child’s life, and consequently the lives of her siblings.

The ripples continue on, changing, growing and reshaping other lives. Through the love that their mothers continue to share, the stories that they continue to tell, these children have done more than to just pass through this life – they continue to change lives. I will be forever grateful to these women for sharing their stories, their grief, their struggles, their triumphs, their love and their courage with the rest of us. These children made a difference in this world, and for that I am both grateful and hopeful.

Keep all special thoughts and memories for lifetimes to come. Share these keepsakes with others to inspire hope and build from the past, which can bridge to the future.
~ Mattie Stepanek, 1990-2004


2 Comments leave one →
  1. Life and Ink permalink
    September 21, 2012 12:31 am


    This was a beautiful, heart-felt post. I wish I had something equally eloquent to say to you but I am at a loss for words. But I wanted to leave a message – to let you know that I was here and that you touched me and that my heart wants to reach out to you, and to Mary, and wrap itself around you both and let you feel its presence like I got to feel yours.

    With warmest regards.


    • September 21, 2012 1:10 am

      Thanks Charlotte. That means a lot, it really does.

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