Wednesday, December 26, 2007

Life and content

One of the dangers about blogging about yourself -- as opposed to say, crazy TV commercials from the 1970s -- is that, sooner or later, you start to view events not as life but content.

Hope had constipation for four days and didn't soil her diaper? I bet there's a parable there about keeping your emotions bottled up. Maureen got desperate and actually made Tuna Helper? Instant punchline!

So it was on Christmas Day, when I caught myself, Flip Video Camera in hand, waiting for something funny to happen and said, "Enough. You are a freaking loser."

I can get a bit obsessive. Since I met Mo in 2000, I have had the following compulsions: Tennis, chicken, watermelon, ping pong, jogging, baking muffins, singing songs about our cats, setting the world record at Arch Rivals, the plight of the American Indian, the supermarket crane game, homemade video and my pal Lulu, among many others. Usually, I'm single-minded in my pursuit for about three weeks, then move on to another obsession.

So I put the camera down and actually enjoyed the holiday for what it was -- a nice day with big Mo and Hope -- and not as something about which to pontificate.

This blog has been a great outlet during a difficult period. It's cathartic and helps sort through a jumble of emotions. But sometimes I err too much on the most flattering side of our lives -- the part where we're one big happy family, standing strong in adversity, sharing a knowing chuckle and maybe learning a few things.

That side exists, but so does a not-so-nice part that is still trying to figure all this out, still hurt and just now beginning to grieve the loss of typical child-rearing. Blame high expectations for the holiday or general fatigure, but it's been a rough patch. We're still raw from the news about her heart condition. I have moments of anger and self-pity. Mo has moments when she thinks I'm a total ass. We both get jealous of friends with healthy babies, then feel guilty because we do.

We feel isolated. The pool of people who can relate to losing a child to a rare genetic condition that supposedly doesn't recur, then having another child with the same problem is limited to say the least. So we talk to each other. Sometimes that works. Sometimes, not so much.

We walk delicate lines, loving a child with special needs. There's joy she's home, but sadness over Hope's condition. We're proud but scared, alternate optimism and despair, fall deeper in love daily but wonder what sort of life she'll have. We don't want to discard our expectations, but don't want to be naive. We want to cherish each moment, but sometimes fear the future. We want to be honest about her issues, but protect her as well.

When Will died, I had another obsession: I would honor his life by becoming a better person. I volunteered, became a Big Brother, started going to church and smiled at strangers.

That lasted a while, then I switched to a more manageable system of handling grief: I'd feel however I wanted.

That sounds pretty good right now.


Grandma K. said...

No, you've always had compulsions; remember Joey deVivre and the NFL forecasts?! Becoming the next Bill James?

We're just lucky that your latest obsession is caring for and loving that beautiful daughter. And writing about her and Mo and you. You do those things so very well, rough edges and all.

Can't wait to see you. Hope you can both take a few hours off for R&R while we're there.

Much love from Maine.

Grandma K. said...


Great photos!!! Keep 'em coming -- that's not "content," that's communication and love!

Anonymous said...

We love you guys! We love the photos too...Molly is happy Joel liked the coffee pot and you're still finding joy even in the most mundane (and practical Feighan gifts).

Love from NYC--Molly, Anne, Jeff

Karen said...

Hi Joel and Maureen,
Just found your blog. Hope is a beautiful little girl. I am so sorry that you lost Will.
My youngest son has CdLS, so I can relate to some of your feelings. Things do get better with time, but I think there will always be a little sadness.
I'm going to add your blog to my blogroll if that's OK.

Anonymous said...

Hi guys,
Thank you for sharing your lives with us. You've got a beautiful little girl there.

beth said...

Happy 1st New Year's Hope! If you were here you'd get to see Uncles Rob & Steve smoke a celebratory cigar, kids begrudgingly wearing homemade crowns and rockin' out to Guitar Hero and your Aunt Beth sound asleep in her happy pants by 9:30 p.m.

Miss & love you guys.

Brooklyn Salt said...

Happy New Year Hope! We are looking forward to meeting your adorable self soon! Wishing you all a joyous, sleep filled 2008!

The Salts