Wednesday, July 28, 2010

60. Upon Further Review, My Last Post Was Boring

It was really boring. I didn't start writing this blog so I could post emotionless updates on my state of mind. So let's spill some blood, shall we?

I'm two years into this journey.

The far shore - the one I left behind on the day Ozzie was born - is a distant memory. It's a place I can never return. I'm not sure I would even be interested in returning if given the opportunity. I have stopped looking back to the past, much like I have stopped looking forward to the future. I have this oddly myopic view of time these days, a visual impairment that resulted from staring too long into the void. It's a staring contest that I won, I guess, but it's one that changed me forever. Since then, I sort of take days as they come.

I'm two years into this journey, and I am not the man I used to be.

Truth be told, I'm not even sure I was a man before. I'm quite sure that I am one now. I have a completely different perspective on life. I have a healthy appreciation for the things that matter most. I have quiet disdain for the superficial problems that others seem to obsess about.

I read an article in the newspaper a few weeks ago about a mother whose young child had an eating disorder - a gluten allergy or something. Something serious, something hard to identify. But the doctors finally figured it out, and he is now on a restricted diet. And the mother's lament went something like this:

"The heartbreak - you have no idea. I mean, I wonder, when he grows up, will he ever even be able to take a date to a restaurant?"

Yes, sounds like a real nightmare. Sounds like the sort of thing I would have worried about, too, before I had to worry about whether my child would ever be able to go out on a date at all. Then again, my observation must sound ridiculous to a parent whose child is deceased.

I'm two years into this journey, and I do not have all the answers.

I can look at Ozzie and experience emotions that swing wildly from joy to terror in the span of a few moments. He makes me happier than I deserve to be. But the sadness stalks me, too, waiting for its chance to pounce.

We are members of a local science museum. We visit frequently, and whenever I go, the sadness waits for me in the gift shop. You see, the gift shop sells little astronaut costumes for children. Parents buy those costumes for their kids with nary a thought. Mommy zips up that suit and tells little Johnny that, one day, if he studies really hard, he can be an astronaut. He can be anything he wants to be.

I have not bought that suit for Ozzie. It just seems cruel.

Yes, it can be tough to fend off the sadness in the gift shop.

I'm two years into this journey, and I have lived to tell the tale.

Recently, another father - a man I had just met - pulled me aside at a local Ds function after I had introduced myself. His own journey started well after mine, and he told me how much this blog meant to he and his wife. He thanked me for the things I have written. He thanked me for my honesty. That brief moment meant more to me than he probably knows. And it raises an important point - honesty. If you are going to blog about something as important as Down syndrome, please do it honestly.

A certain very high-profile Ds blogger did a great job of turning me off quickly because her posts simply did not ring true. I know too many people who have gone through this process. I have read their most intimate thoughts. None of them experienced the instant Nirvana that is, apparently, her new life. Truth be told, it's hard as hell to work through that first year. Anyone who tells you differently - anyone who makes you feel guilty for not being blissfully happy in the months after the birth of your baby - is a liar. I think people get swept up in blogging, sometimes, and they feel that they have a responsibility to the Ds community to paint everything with beautiful colors. But sometimes the morning sky is blood red, and should be painted with a stiff, blood-soaked brush. I value honesty in a blog, above all else. At the very least, don't be dishonest. If you want me to read it, anyway.

I'm two years into this journey, and I think the roughest seas are behind me.

I still can't be sure of that, but I certainly hope so.

59. A Funny Thing Happened On the Way to the Rest of My Life

Whatever happened to Dan?
Where did he go?

A blogger friend told me that someone recently asked that about me. The answer is that I'm still right here. It's true that I'm not chronicling my life much these days. Doesn't matter, because no one reads my blog anymore (although I guess that's somewhat of a "chicken or the egg" conundrum). So, why am I not writing? Why am I not scouring other people's blogs and leaving witty comments every night? Well, the answer may bore you.

One day, not so very long ago, I realized that Down syndrome was consuming my life. I don't mean that Ozzie was consuming my life, I mean that I was spending my entire day with one foot dipped into the Ds world. I was reading a ridiculous amount of blogs, sharing my life with strangers, picking fights online (with those who deserved it), and, in general, investing a lot of my emotional energy on the subject. And finally something just snapped, and I reflexively took a big step back. I needed space to breathe.

I think I'm not searching for answers the way I once was. I'm not cutting a trail with a machete, I'm just sort of ambling along. Things have gotten much easier - I have figured out how to live. And life feels so normal now, I just don't feel compelled to share the minutia of my day-to-day existence. It seems uninteresting to me.

But on reflection, I realize that I didn't really tell my blogger friends about this transformation. And so my site gradually became less and less current. Less and less memorable. And finally, people just sort of forgot about my blog, I think. And that's okay with me, because many of my blog friends are very active online, and I know I don't give them a lot of reason to stop by anymore. My bad.

However, I am still here. I have not abandoned my blog. If you email me, I will write back to you. And I will continue to post my thoughts as I have them, just not the boring ones. Hopefully people will understand.

By the way, Ozzie is now walking full-time. And he recently turned two. And I have lots of photos and videos to post, I just haven't had lots of free time to gather and post them. I know that's a poor excuse, but it's the best one I have. I know that when Ozzie was born, it was really helpful for me to see videos of other children with Ds online. It helped me see the future in a way that text never could. So I promise I will post videos of Ozzie here so that others can watch him grow and develop. He is hilarious, and he has a smile as big as the horizon, and he brings joy to my life that you new parents cannot yet imagine. But you will experience this joy soon. Pinkie swear.

So that's my shocking story. I'm putting this message in this bottle and giving it a good hard toss out into the waves. If any of my blogger friends find it, I would love if they would leave me a comment. It's sort of boring all alone on this tiny island.

Friday, July 16, 2010

58. Helping Hand

Hi everyone.

My dear blogger friend is doing the thing that lots of people daydream about doing but never actually do. She's adopting TWO young girls (both have Down syndrome) from an Eastern European orphanage. My friend is not just daydreaming, she is really doing it. And you must understand that her intervention will literally save their lives. One of the little girls has a serious heart condition and needs proper surgical care. The other is getting too old for the orphanage and will soon be institutionalized, and in eastern Europe, that means this beautiful little girl with a big smile has a very high probability of wasting away and even dying from neglect in the very near future.

My dear blogger friend could really use everyone's help to ease the financial burden, because adoption isn't cheap. I mean, if you step back and take a big-picture view, it's amazing just how little it takes to buy two beautiful lives (because those two little girls are obviously priceless). But if we look at the situation in less poetic terms, it becomes clear that even the deal of a lifetime is sometimes very expensive.

So I ask that you please help my friend. With sugar on top. And a cherry.

She's set up a blog to explain everything and provide a place where people can donate. She's also currently holding a raffle on her blog, and the lucky winner will receive a beautiful piece of art. So please visit her blog and give, if you can. She has done more for the Down syndrome community than anyone I know.

Raffle for Mallory & Peach