Monday, October 12, 2009

Then and Now - Take 2

Here's what I posted a year ago today. I had a lot of questions back then.

I wondered if I was up to attending our local Buddy Walk, and I remember two dominating feelings: obligation and guilt. I felt like not only should I take part in the Buddy Walk, but I should want to. But I really didn't want to. Instead of a desire to go, I was filled with a sense of dread about it, and therefore guilt. I didn't want to see a possible snapshot of Finn's future; I was afraid of what I'd see. And it also felt like attending the Buddy Walk would be surrendering to the fact that Finn had Down syndrome, and a year ago, my acceptance of it was still tenuous.

Where am I with it now, a year later? I have mixed feelings about this year's Buddy Walk. I no longer feel a sense of dread about being a part of a large gathering of families and people with Ds, and in fact, there is a part of me that has a deep desire to connect with other families of people with Ds - or maybe more than the families, the people with Ds themselves. Fifteen months after Finn's birth, I find myself smiling every time I see or encounter a person with Ds. "There's one of Finn's peeps!" I tell myself. I want to hug them, to invite them over to my house. That girl who works at the grocery store? I'm practically a stalker. I don't know if this is healthy, but I feel like I've come a long way down the road of acceptance.

On the other side of the coin, however, is this huge feeling of wanting Finn to grow up being seen and treated as "normal" as possible, by the world, and by his siblings. And because of that, I question whether going to the Buddy Walk only emphasizes his differences. Finn's not special in our house - no more or less special than any of the other kids. So why go to an event that celebrates his differences? How will that affect his siblings' perceptions of him long term? These are the questions I weigh in my mind, and I have not come up with an answer yet. The reality, though, is that our Buddy Walk is scheduled for November 8, and with Michael's ongoing chemo, it's impossible to plan and commit to anything even a week or two down the road. So I just don't know.

A year ago, I questioned everyone's motives who admired Finn when we were out in public. Has that changed? Not really. I still wonder if people who coo over him and tell me how cute he is - do they see that he has Down syndrome? Do they at least wonder? And if so, do they really think he's cute, or do they just think he's cute for a disabled kid? I still wonder this all the time - I'm a cynic by nature. The difference that a year has given me, though, is that I no longer care nearly as much. Do they see it? Maybe. Maybe not. Doesn't matter to me.

It makes me laugh and cringe at the same time when I go back and read earlier posts in which I referred to Finn's "subtle" Down syndrome characteristics. And it was true - as an infant, I think it was difficult to see it just by looking at him. And there was a desperately hopeful part of me that clung to the idea that if he didn't look like he had Ds, then the Ds wouldn't much impact him as a whole. Gah! Foolish. As Finn has gotten older, I believe that the classic Down syndrome facial features have come more into focus. How much the Down syndrome affects him as a whole is still evolving. I don't know. I know that I, like so many other parents, held out a hope bordering on belief for a long time that my kid was going to be different. He was going to break the mold of Ds! He would be the superstar of the Down syndrome world! He would make his way into medical and scientific textbooks as the kid who was diagnosed with Down syndrome but never manifested any actual characteristics of Down syndrome! It makes me a little sad now, and a little embarrassed and shameful. I was clearly in denial still. Well, guess what? Finn's not going to be the kid to break the mold or get into any medical journals for his achievements. I still - and always will - have high hopes and expectations for him, but I've accepted the fact that Down syndrome is in every cell of his body and will place certain limitations on him. I'm okay with it - much more okay than I was a year ago.

A year ago, I had lots of questions about practical things pertaining to the lives of adults with Ds. Now? I try not to look too far into the future. What's the point? Trying to foresee the future is a fool's game, and anyone's guess.

I certainly have hopes about Finn's future: I hope he enjoys and is eager to learn. I hope he is never toppled by rejection, or other people's small-mindedness. I hope he makes some close, loyal friends. I hope he falls in love with someone worthy of him. I hope he finds fulfilling work someday. I hope he lives a self-directed life.

But for now, I hope he continues to feel the warmth of my love for him and the love of his Daddy and brothers and sisters, and I hope he continues to thrive.


Mel said...

I am 21 months down the track and this pretty much sums up exactly how I feel. So many contradictions, so much love, such precious wee boys. I too stalk someone with DS at the local supermarket. I smile at him each time I am there, hoping he'll engage with me, but he never does! Glad I'm not the only nutter out there- lol!

A Lady Called Amy said...

My son is three weeks old now... it's almost been two weeks since I learned about the DS. From reading this it seems like I'm probably still having some form of deinial. I try not to, I try to accept it, I try to focus on how grateful I am that there haven't been any medical complications yet. I'm a little scared, but I'm trying to be okay. Thanks for sharing your feelings, past and present. :-)

starrlife said...

It's beautiful to watch your journey. We always struggle with the idea of identifying with the DS community or with the "designated as typical" set. In reality I think of it kind of like integrating all parts of her identity and maintaining our own mindset of ableism. So, this year we are organizing our own Buddy Walk and it has been enlightening.But our journey of identity is not over yet!

Beth said...

Lisa, this is beautifully written, as always. You've come a long way, baby.
If it makes you feel any better, we completely blew off this year's Buddy Walk. Chloe had soccer and we were going to be really late, probably miss the whole "walk" part of it anyway. Then it was really cold and not even a good day to enjoy the rest of the festivities.
I too have mixed emotions about the Buddy Walk. I know that it is a wonderful day to rub shoulders with other families and individuals touched by Ds and that it raises awareness and all that. But I've also come to think of it as just another fundraiser...and I don't participate well in any of my kids' fundraisers! I know the money goes to great advocacy programs, just like the PTO fundraiser money goes to great new playground equipment and copy machines which benefit my kids, but...bleh. I hate selling stuff or asking people for money, even for a great cause.

My point? Did I have one? Oh, yeah. Don't beat yourself up about the Buddy Walk this year if you don't make it. I imagine some years we'll participate and some years we won't. There will be many, many more Buddy Walks!

Rachel said...

I can relate on a few levels. And some of this post takes me back to appreciating everything my mother went through in raising a profoundly deaf daughter.

We still struggle with a balance of how to appeciate what we're given and "celebrate" our differences.

My mother raised my sister and I no differently than the fact that they both learned to look me in the face each time they spoke, and to sign if I needed it. Rules were still rules and I was expected to go as far as I could in school (which was annoying once they came to expect A's, ha ha).

Your approach with Finn - I love the feeling of "he's first and foremost one of my kids" that I get from your blog posts. Absolutely - wish and pray for the very best for him as you do for all of your children. And he will benefit from simply being a part of a loving family (and I bet your kids are a lot more sensitive and caring toward others, no?) :)