In the Wake...

Yesterday evening, I was driving back from town on the quaint little road that winds through the river valley and I was thinking of how much I love this sleepy little area. I've lived a lot of places, but here the time seems almost suspended, especially when the sun is shining down on the green and golden hills surrounding our home.

But as the thought of love entered my brain, a little shot of pain was felt in my gut. We are faced with leaving this place. It's mostly out of our control; this little fantasy life is fleeting and charmed as it has been, it has also been peppered with hurt.

We live outside of two very small towns and I recently feel like we don't really belong to either community. I feel much more connected to the countryside, to the neighbors who have helped us in times of need and to the land itself. Being the hermit that I am, I can't imagine having the neighboring communities involved in our business, although there is a degree of that anyway. A small town is a small town is a small town and people assume to know many things.

I have become aquainted with some of the townies, and some of them are good people. Some are curious (like a fellow parent at the school who followed me out to my car to ask if it was true that I was 'that model who lived outside of [town] with three kids'), and some are just downright nosy.

There are a few people in the community who I have been very disappointed with, who I might say have turned me off to both communities. There is a woman who befriended me, or tried to. She happens to be a fellow heart mother, and I would love to only say good things about fellow heart parents, but I learned this lesson from her: people of all walks of life can be selfish and cruel and having children with congenital heart defects does not make us kindred spirits.

I really wanted to connect with this woman and I thought we could work together to bring heart awareness to our mutual community by including all the heart families in the area, of which there are more than just us two. I tried to get her on board, but in the end I found out that her need for attention seemed to outweigh the heart communities' need for awareness.  And when I tried to go around her and do what I had proposed on my own, I was ignored outright by the local leaders.  I felt a little betrayed and it has left a taste of bitterness in me that has prevented me from trying to be more involved in the local community and even in the heart community.

I am writing about this in an attempt to purge the bitterness. I know in my heart that this woman really has no effect on me or my family and that I am actually much better off without her negativity in my life. I can't help, however, feeling left behind in the wake of that bitterness. We could have stood strong for each other, instead of trying to compete for crappy small town newspaper space.

There is an event this weekend for heart families that will celebrate the lives of our miracles and I thought for a long while that we would attend and be proud of our little Charlie and celebrate the other heart kids and remember the angels. But frankly, now I am just so tired of the rhetoric that I could scream (if I thought the scream would be heard), and I find that I want very little to do with these public displays, no matter how great and good the event. Trying to be a part of it has proved more isolating than when we didn't know anything about heart defects and were just another set of scared parents in the NICU.

I don't want to make it seem as if there aren't any heart families or NICU families that have reached out to us or been very kind to us, because there have been wonderful people who have fed us in the hospital and kept us company and prayed for us in our most desperate hours and even helped keep a roof over our heads. And I have tried to do the same for others I come across in my life who need a friend or a prayer.

But here on the prairie, where I had observed such kindess from my neighbors, I never thought I would be let down by the communities that we have been interacting with for years, or a fellow heart mother, especially when all I asked for was a chance to do good.  I can only think that I was exposed to this person so that I could hold a mirror up in front of my face and stop myself from going down the same negative path.  I sincerely hope that I am not.

Let down as I am, I still feel sad at the thought of possibly having to leave. It feels like home here and what I really want for my daughter is a home where she can be normal. Terel said it best to me one night, after I realized that the other woman was only out for her own interests. He said, "Awareness is important, sure, but so is our daughter living as normal life as possible. Think of that other kid, and how everyone in town will always see him as 'that heart kid'. That's not what we want for Charlie. We don't want stares and whispers and pity."

And he's right. While I appreciate and admire the good people out there who are raising awareness and supporting the heart community, that path is not the path for our family. Instead of attending the event this weekend, I will keep all of you wonderful heart families in my thoughts and continue to go about our normal lives. If you need something from me, I will surely try my best to give it. In the meantime I want to do a better job of living in the moment in this blissful prairie life. I want to cleanse my thoughts of negativity and appreciate the chance I have been given to be here with my family while it lasts.  And then, to move forward without regret.