Meet Me at the Swings

I am working on a mental project right now. Actually the project is formally in the works, but mentally I have to figure exactly how to present various pieces of information about our family and Ivey. It is easy to put information up on the blog, to sift through the day-to-day routine and pick out the pieces. Even the most descriptive of my presentations here falls short of the actual live events, and even those tend to be biased. I try. And I also build walls.

So, I have been thinking about a conversation I had earlier this week with another special needs mama. You would think that I talk to lots of other moms with special needs children, but I do not. It is rare. Even the internet moms I talk with outline their day-to-day humdrum. No, these deep conversations do not happen often.

We spoke about our children, each with their own unique talents. Easy conversation. And then the conversation turned to personal inquiry. Note that this mom and I had never met and I was willing to reveal the dark corners of my mind with out hesitation. The uniqueness of our life dusted off to expose what I normally try to protect and hide from those closest to us.

This conversation made me rethink my own involvement and responsibilities for our life, my attitude as a special need mama. What could I do to open my heart up to those closest to us trying to get in and have a real conversation about Ivey, our family? For many months I have functioned as a mom who screams at the top of her lungs, 'Look How Wonderful the Cover of The Book Is, But Don't You Dare Read What Is Inside' or the 'Today Is Merely a Hard Day, And I Can Do It On My Own' portrayals.

For whatever reason I thought of an article I read a while back. The Mother at the Swings. So I went to visit the site, which I have not done in several months. There I found the last entry. Her son died this summer. He was only a child. More thinking.

I reread The Mother at The Swings. In the article she mentions the tiers that people get categorized into at the onset of a special need birth… For the most part I can not relate to those tiers. Our family is 'lucky' or so we have been told. Literally, hospital staff, home nurses and members of various organizations have praised us. They see in us what most families do not have.

To borrow terms from The Mother at the Swings, they see rocks. New, old, they are all here. And in an unusually large amount at that. As for gingerbread men, they do not really run. That only happens in children's stories. My conversation this week made reference to gingerbread men. I spoke of how hard it was to open up to my friends about trivial moments, letting them know how tough some days are. She reflected that most of her pre-special need friends had left her life. I began to wonder. Am I pushing them to leave, not the other way around? Am I encouraging them to possibly leave? Maybe I am pushing them away with fear and pride. Is it my own fear, my own hurt of watching their children grow and my assumption that they don't understand, can't understand. Maybe in our haste to pull ourselves back together after the birth of our special child, we push those away that see our pain, despite the wall. I am guilty of just that.

In my world, the rocks push back, they have not left. Even in the midst of my refusal, they have stuck. No gingerbread men here only a wall that I have successfully built.

For months on end now, I have grappled with making rocks into gingerbread. Maintain balance. I always fall short. Not a week has gone by, that I have returned phone calls as quickly as I should, or sent that email in a timely matter, or could mustered the energy to make lunch plans. Maybe that is me pushing. In those calls I would have be honest, say today is hard, or know that in person I would break down and cry – oh, I am too strong for that, so I hide. In essence I am pushing away. Making the gingerbread to gobble them up, make them go away, keep confidence in isolation.

My project is my way of preventing so much of this. I hope that I don't stand in the way.

That brings the other component of The Mother at The Swings into play ~ being the mother, and dealing with the other mother. Very Complex. Do my rocks really want to know why playgroup is challenging for me as a mother? Maybe I push because I want to protect them from 'that'. Hidden thoughts and emotions are there with me at the swings no matter how much I love being Ivey's mother, and love learning this crazy new life of ours. Do they want to learn how to ask those questions or be the ones to take those questions if I am not around? How much should I expect them to handle, how deep do they really want to be involved? Being part of our lives will change their lives. Of course, I have not really given them a chance.

All this has really made me think about our new 'project'. How do I let people in, without keeping them at bay? How do I think about the future and all it takes to get us there, all of the wonderful possibilities that lie before us, and not think about a the flip side, a time frame that we could be working in? In her article Special Need Mama's last entry reminded me of that. The reminder that my reality with my daughter and the length of her life lingers. Oh, she is as healthy as a horse today. But deep in the corners of my mind that possibility is there. A thought I never want to think about, but remember in those wee hours of the night.

I want Ivey to be invested in this world, but afraid that if I give all of Ivey away that people will run away. So, I reel out just enough to keep every one interested, but not afraid, enough to let them look at Ivey from outside the glass, yet not get too close. There must be a balance. As with everything else, I am sure it will take time, I just hope not too long.