Tuesday, November 20, 2007

Now, the rest of our lives

So this is it. Home. Alone. Perpetually tired. A dog at your feet, a baby monitor never more than 3 feet away. No burp, wheeze, hiccup, fart or gasp left unexamined. All of them sparking new worries, what-ifs and moments of "I know we shouldn't, but let's just check the Internet this one time for symptoms of whooping cough."

I dropped off my sister and brother, Beth and Steve, at the airport today about 5 a.m. For the first extended time since Hope's birth, we have no house guests. There's no one to run errands, give us another excuse to order take-out or offer advice, reassurances and fresh insights into "Dancing with the Stars."

This is our life now: Me, Mo, two annoying cats, an occasionally behaved dog and a baby who may not need our full attention all 1,440 minutes a day but sure as heck gets it.

It's what we always wanted. And it's great, but scary. Even if Hope didn't have a genetic condition, we'd be fretting now. But she does.

We're coming to believe that caring for a special-needs child is a lot like raising a healthy one. But everything is magnified and you have a lot more doctors' appointments. We have the same fears -- is she getting enough to eat? is that sneeze the start of the Taiwan Flu? -- but less margin for error. Hope is doing great, but she may always have health worries. Kids with CdLS, her presumed condition, have a host of potential problems from feeding and hearing to motor skills and development.

Hope already has seen more doctors than I have in my life and her December is shaping up like a doozy: Cardiologists to follow up on the blood-flow issues in her heart (so far, so good, but intervention probable in her life); audiologists to follow up on her hearing (preliminary tests show she could have a mild hearing deficiency that she may be able to outgrow); physical therapy to tone those arms as well as regular appointments with our pediatrician and geneticist.

It's overwhelming stuff. We have our moments, but we try not to let it consume us. We feel terrible that Hope may have to endure more than other kids, but we are well-practiced in the art of self-help mantra: She is who she is supposed to be. Don't borrow worries. One day at a time. Don't worry about five years any more than parents with healthy children worry about them growing up to be jerks.

They may be cliches. But they're also quite true, and Hope makes all of this so much easier. We fall deeper for the sassy redhead who becomes more expressive (and attitudinal) every day.

And she's doing well. Hope isn't exactly a candidate for Jenny Craig yet, but is finally back to her birth weight. Her funny breathing -- tracheomalacia, the saggy windpipe that eventually goes away -- seems a bit worse in the past two or three days. The doctors say it's nothing to worry about, but we do anyway. She's also feeding well, although I gave the false impression last week that Hope is a breast-feeding champ. She has fed from her mother's breast. Once tremendously. Since then? Eh, not so much. But you should see that kid with a bottle of mother's milk! Chug-a-lug!

We weren't sure about the future of the blog after she got home. The crisis has passed. But the need remains for a place to post updates, keep those who are interested in the loop and minimize redundant conversations.

Plus, it gives us a chance to brag up our girl and share fantastic photos like the ones Steve shot this week.

Ain't she a cutie-patootie?


Pam said...

She is the CUTEST of cutie-patooties!! Enjoy this time! love, love, love you guys!
Pam & Lar
p.s I check the blog obsessively! thanks for keeping it up, I love being in the loop!

Anonymous said...

She is adorable! You definitely have a right to brag. Have a great Thanksgiving with your beautiful baby girl. Hope will definitely enjoy the turkey by transitive property thru mommy milk. Thanks for keeping the blog going - we love to keep up with Hope's progress.

All our love -

Elena & Charlie

Anonymous said...

Hey Joel, the pics are wonderful. keep em coming. Enjoy your home alone time. We love the sassy red-head. We hope to see you this weekend too.

Love, Mike,Jamie,Connor & Garrett