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.
Electric Picnic and the Year of Little Magic
3 months ago