Tuesday, September 28, 2010

Getting to the heart of it

There has been something on my mind lately, and I've found that in order to really get to the heart of it, I write.  The thing is that sometimes it takes me a good page and a half of blah blah blah this-happened-yesterday before I get to the good stuff. ...I'm gonna try to avoid that and jump in. So, excuse me if what comes out next is unorganized thought and unrelated topics.  I'll start here: A few days after I received the results of my amniocentesis concluding that my baby has Down syndrome, I attended my son, Christian's Mommy and Me class at the preschool.  We had a circle time just for the Mommies.  It was during the outdoor playtime, where half of the Mom's would watch the kids and the other half would sit and talk about the topic of the week (i.e sleeping habits, potty training, tantrums, etc.)  At this particular circle time, the teacher started the talk by asking if any of us had anything that we needed to address.  I couldn't hold it in, and started crying, "Yeah...I just found out my baby has Down syndrome."   The teacher and one of the Moms immediately grabbed my hands.  Everyone was concerned, I was devastated.  One Mom said nothing.  And I mean, Nothing. It's okay, I told myself.  Not everyone knows what to say.  I had to leave early that day for a doctor's appointment and before I left, the teacher asked if she could share the news with the other Moms in the class. She wasn't sure if it was a good idea if some knew and some didn't.  I told her that of course she could share the news...besides, it was one less time that I would have to break down and choke back the words, My baby has Down syndrome.  It was our last class before the Christmas holiday, so all I knew of this conversation was what my friend, Katherine (another Mom in the class) relayed to me.  She told me that everyone had been really concerned and sad for me that we had received this news.  That there had been a lot of tears during the Goodbye song...you know the cutesy little song that all preschools sing when the children leave for the day? Yeah...the Goodbye song. It was teary...it kinda makes me laugh to know that.  Bet you never envisioned a circumstance where Moms would be crying during the Goodbye song... 

Well, I haven't seen some of those Moms since that announcement, because their children advanced to the main preschool after the holiday break.  I haven't seen some of them...until now.  It's quite a flash-forward.  From Utter Devastation to We're fine.  In fact, we're better than fine...we have a beautiful baby boy at home who is a content little guy and sleeps through the night! A flash forward, indeed. One Mom in particular, was someone who I loved talking to.  Every time she would see me, she would light up in a big smile and say Hello!  Well, her daughter and my son are in the same class now and it took me a few classes to even realize it.  Every time I saw her, she was engaged in some conversation or looking some other direction, but I finally caught her eye last week and said, "Hi!  How are you?  I'm so excited that our kids are in class together!"  She was nice in return and I introduced her to Elijah, who smiled at her.  Then she was on her way, and since then, every time I see her, she is engaged in conversation or looking some other direction... It may be nothing.  I thought it was curious that there was not even a cursory "How are you all doing? How is the baby doing?"  Curious, but not damning. I'm old enough to realize that not everything is about me- she could be preoccupied with many, many things.  She could have very important, engaging conversations that should not be broken and she could looking around taking in the landscape deep in thought about how she'll re-do her flower beds. Who knows?  But, I kinda feel like it might be...  discomfort? ...awkwardness? ...ignorance?... 
Maybe something, but maybe nothing.  But it makes me sad.  It makes me sad because I wish I would have known then what I know now.  I wish I could've, would've had the foresight to know that my fears about Down syndrome were outdated. I wish that I could've enlightened people.  I wish that I didn't have fear about my beautiful baby boy.  But, I did.
It's not about this Mom.  I don't really know her, and if she really is feeling so awkward about me and my family, then chances are that we wouldn't be a good fit friend-wise anyway. 

I brought this up to Susan, the childhood development specialist, who has been coming each week to assess and play with Elijah and discuss his progress with me.  Her background as a therapist, was especially helpful today! She shared that some people (for many different reasons) need to feel that their world is fair and just and good, and when unexpected or bad things happen to people around them, it shakes their world.  Some people cannot handle having their world shaken and so they step back.  Ah-ha.  I think she may be right.  She also reminded me that those old stereotypes still exist and that there are people who even think that Down syndrome is contagious!!  (Just in case, if you are one of them, click here.)

I think the real reason I have been cavorting with all of this "Is she, isn't she" stuff, comes down to a very, very disturbing/ incredibly uplifting piece I read over the weekend.  Take a little time, and read this blog post:
My jaw drops when I read what people are saying in this era, this year, this month, and in fact, just one week ago.  I only hope that if, or when, I am faced with bold comments such as those, that I will have the grace and strength that this writer did.  I have strong feelings about what my choice to have my baby means for me, and maybe even some strong feelings about what it might mean for others.  It could border on the...dare I say...judgemental... (Loud gasp.) It's possible.  One reader of my guest post last week pointed out something that I said could be read as a judgement, and I'm thinking it through.  I'm taking her comment seriously because it was said in a loving, hey-have-you-thought-of-it-this-way way, and I really appreciate that.  I appreciate that at the heart of what I'm dealing with right now, it is simply guesses about a person's small talk (or lack thereof). I appreciate that at the heart of what I'm dealing with there is mostly just love and support.  I hope I am not boring my friends to tears with "the heart of what I am dealing with", but I guess that is why I have this blog. They don't have to read it. :)

At the heart of it, I'm blessed.

For my birthday, I asked for this very special necklace that I just love.  Thought I'd share it with you:



citymouse said...

I am stopping by from SITS and so glad I did. This is a great post. I am quite sure your family and especially your little Elijah will be just fine because you have your head and heart on straight! I love your necklace and think your are indeed blessed.

Jenny said...

Great post...I am finding most people are just loving and kind and accepting of my son...But there are others who really do not know how to act around me, some even whisper when asking about him, as though the fact that he has Ds should be some sort of dirty secret.
I guess the most important thing we can do as parents is educate...the more we talk about Down syndrome the more people will learn the truth about it.
Love your blog :)

Gina said...

I have been reading your blog for a while now... wanting to get to know my "kindred spirit". I LOVE your blog and your writing and YOU. I wish we lived next door to each other!!
This post is SO good. Ya know, I remember feeling like everyone stared at my son everywhere we went. I was convinced it was because of him having Down Syndrome. Over the years I guess I kinda forgot he actually has DS because he's just Jordan and there is a place for him in this world.
Now if someone stares I think there must be something on my face or more commonly because Jordan is dancing. ;-)
It takes time.
Many people treated me like my baby died when Jordan was born. And most people avoided me because they didn't know what to say.
And.... that hurt, but it's OK.
Don't beat yourself up over your reaction. It's that cycle of emotion and you needed some comfort.
I did too.
And then you get strong. You get to a point where you want everyone to see what a joy and a blessing it is. I wish the world could recognize that these kids are here on this earth to TEACH US. Not the other way around. They get it. They are more christ like than we could ever be.
I guess it's up to us to show them that. You and me sister: walking through it with our precious boys and helping to put the spotlight on their halo and their wings.

So happy you found me. And now I found you.

I have an award for you on my blog today. You deserve it. I can't wait to be on this journey with you.

P said...

WOW, tough topic. I can't even be brave enough to share out here on this one but you will certainly have a DANCER so that's the best advice, KEEP DANCING! LOVE THAT.

You learn and grow and adjust your perspective. Help us do the same, I can't wait to see more updates on your thinking along this topic as it ages.

TheShoppingGirl said...

Stopping in from SITS! Your post today is so touching. I immediately became a follower.

I can totally relate to writing all the blah blah before getting to the good stuff. I do the same thing. I also need to work on that, but I love what you did. It didn't seem disorganized.

I'm using my blog as an outlet, too. My mom was just recently diagnosed with stage 4 breast cancer.

My thoughts are with you and your family. But as my cousin (who has down syndrome) will tell you. He will lead a very happy, fulfilled life.

And I understand about people ignoring you and looking away. Sometimes I feel such a lack of support from my "closest" friends. I want to stop them in their tracks and just ask. Why are you ignoring the situation? It's not going to go away. I could use your help right now. But it's not always easy to ask for help.


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