Friday, September 18, 2009

Advocacy and Exhaustion

I generally wear my heart on my sleeve. I'm very real about my life, thoughts, and emotions. I'm terrible about erecting walls. If you are not, you might be tempted to think that this is a good thing. Let me quickly assure you that it is not. With increased vulnerability, comes an increased risk for woundedness. One of my greatest fears is to be misunderstood.

It happened yesterday, in a group, of course. I felt attacked and retreated, but lost the opportunity to clarify, to be understood.

I returned home to lick my wounds and wonder why it had hurt so much. Why did I care so much what those people thought of me?

The conflict had nothing to do with Eon or Down syndrome, and yet my response had everything to do with them. I overreacted because I've been living in a state of high alert. I am constantly on the look-out for ways to advocate and educate.

Being the mother of a child with Down syndrome is much harder than I imagined, but not in the ways I thought it would be. Parenting Eon is a breeze! He is the easiest, most content, delightful baby I have ever had. Unlike my typical babies, I never tire of caring for him or meeting his needs. He is a complete joy!

But we live in a hateful, selfish world. I read wonderful articles advocating for people with Ds, and then scroll down to read vile, nasty comments. There are many who strongly advocate that aborting a baby with Ds is, not only acceptable, but rather the only responsible choice. There are many who are simply ignorant of today's Ds, and doggedly hold to the "what happens when you're gone and the siblings will have to care for them?" mentality. There are many more who are concerned with the monetary cost to society as a whole, a sentiment sure to spread like wildfire when the government gets through with healthcare.

The first group always shocks me, the second irritates me, and the third scares me.

And so, I continue to educate and advocate. But I get tired of the process. And he is only seven months old. I will be doing this forever. But not today. Today, I'm going to lick my wounds and hold my boy.


  1. I think we're going to just have to not let these people get to us. I know that sounds easier than actually doing it but honestly if people aren't going to be supportive than don't waste your time on them. You can advocate and educate all you want but some people are going to believe what they believe and the devil is going to try to work his way in there and bring you down each and every time he gets a chance, you know that. Keep your head held high and keep moving on. Don't look back either! It's the only way you're going to make it in this crazy world. God has his hands on everything and he'll be there to hold yours.

  2. The only thing that gets to me about down syndrome is the cold callous world and their perception of my child. It really hurts me that so many people choose to abort their babies, babies that would have been wonderful children like our own. In the end though, we can advocate for our children and others like them. In a way I think I've resisted being a full fledged advocate in the political sense. I wonder if some day I will be more active in some of the larger DS organizations. For now, I advocate more on a micro level; I have my blog, and try to regularly comment on bbc. Perhaps something we say will change just one persons mind. Even more likely our beautiful children will be there to show the world what wonderful human beings they really are. Sometimes it's hard to realize it is mostly out of our control. I don't know if I'm making any sense, but you're not alone, i also feel your pain.

  3. Thanks for sharing both on here and this morning! It was a great reminder!

  4. He's just lovely. New to your blog. Thank you for your comment on mine, it meant a lot.

    Off to read more about your little cutie.