Thursday, December 23, 2010

I try to keep it all in perspective...

Things could be harder, different, more exhausting.

Lots of kids come in and out of the therapy doors each day. I try and make friends with the moms, nannies, grandmas, dads, hoping we can connect on some level to make the loneliness feel like less. I am very aware of how Ella looks compared to the other kids --so cute and looking so normal to them. And so I get ousted, instantly, because they think “That family is here to work on the th’ sound. They’ll be gone in 6 weeks.” Not worth investing in short-timers.

But then they hear her talk and invite me to join their club.


I ran away to the beach a couple months ago hoping God would heal my soul. I was feeling like I was not doing enough at anything I do. Owen wasn’t getting all the time and touch he craves and I don’t take him to the park enough. Ella’s pile of speech words and tongue exercises was approaching the second story and I was more than overwhelmed. Nick was going to be gone for the next 18 hours or so—other than sleeping—so we got the hell out of dodge.

It was mid-October, but the sun melted our skin like May or June in Technicolor. The leaves had mostly turned, but still hung from the trees. Michigan in the fall has got to be as close to Heaven as we have on earth—well, Midwest speaking.

They rode their bikes to the beach as fast as they could and sprinted to the water. Owen began finding and skipping rocks immediately. I think it’s one of his spiritual gifts; Owen is nearly a professional. All my rocks hit the water with weight and force, as his moved like those weird little flying squirrels in the air. But after 10 minutes of successful lessons, I was sinking less and skipping more. Apparently, I could be really good if I “practice every day and never give up.”

Ella asked if I’d strip her down to the nude so she could be one with the water. Naked. My response sent her pouting as she threw her clothed body in to the surf. She would run away and be a mermaid if I let her. But I won’t and this makes her very angry. It’s a private beach and that view is not what they paid a million dollars for!

I just sat in the warm sand, taking pictures with my phone, wondering what was next. How do I stop being so worried about my family and the world? How do I move on from feeling like I’m not good enough or strong enough for these tasks in front of me?

I prayed an Anne Lamott-ish prayer because it was all that made sense: HELP, HELP, HELP!


Nick had recently taken Ella to a famous ENT at Riley Children’s Hospital in Indianapolis. This appointment took 6 months to get and there was a lot riding on what was said. In the spring, Ella had visited a group of doctors and specialists called the “The Cleft Clinic” at our local hospital. All at once, an oral surgeon, orthodontist, pediatric dentist, plastic surgeon, nutritionist and speech therapist bombarded us and wanted a 2 minute synopsis of her life and problems to see what they could offer. The consensus was to wait 6 months or so and do a frenulectomy (a procedure for kids who are “tongue tied”) and see what happens. Instead of the traditional way, the surgeons were going to laser on the sides of her tongue and see if that loosened up her tongue enough to make the sounds she needed. I was scared to death, but was excited that there was an option. They said, “we can’t promise it will fix everything, but it will do something." Sold. When can we sign up?

But not long after that, our beloved surgeon*, called me—alarmed—because he has received the report from the cleft team. He wanted to see us right away before anyone did any cutting. Dr. Danahey looked in her mouth again and again, moving her tongue this way and that, to make sure. He didn’t see what they saw and more so thought it could possibly damage her nerves. To top it off, she may have to relearn some of the feeding skills we’d worked so hard to have. My heart sank as I agreed to see one of the best ENT’s he knew before we made any decisions.

(*If you need a cleft palate or lip surgeon in the midwest, he is the best!)

And so this was our third opinion. Nick had a list of questions to ask, any of which he forgot would equal an early death for him. I was at home with a back so full of pulled muscles that I could hardly stand or sit or lay. Nick didn’t call me right away, which worried me. And then when he did, I wish he hadn’t. This doctor, too, felt the surgery was not a good idea. Negative consequences may not be severe, but not worth it with the advantages so small. Nick braced himself to hear the words, “She may never talk normal.” Solution: Speech therapy, speech therapy, speech therapy.

Nothing miraculous; just work.


The waves never parted and the sun never stood still, but I felt God was there. He was in the trees and the air and although everything in my head was shouting, “YOU ARE ALONE,” I knew I was not.

And impressing on me strongly was the solution for now, for this day: Get up and take one step. The pace and direction didn’t seem to matter as I stood. It was about not being frozen anymore; moving in some direction. So I pulled my big girl pants up— literally, as they had become a bit lose in the surf—and gathered the children and bikes and headed back to the Inn.

Owen left us in his dust as Ella and I were trying to fix her pedal which has a habit of falling off. And before I knew it, we were nearly keeping up. Running, laughing and crying all the way, holding my big girl pants up with white knuckles, but dammit, they were up.

It wasn’t everything, but it was something.