Grace

Eight years ago today my nephew Mark was born.

I can’t think about Mark now without also thinking about my niece Colby, who was born in January of 2010. Both of them were born with different, fatal birth defects.

Mark had Anencephaly: A congenital absence of the brain and cranial vault, with the cerebral hemispheres completely missing or greatly reduced in size.

Colby had Trisomy-18: A genetic disorder in which a person has a third copy of genetic material from chromosome 18, instead of the usual two copies.

Years before Mark was born, I became aware that the way babies are allotted here on earth can at times seem remarkably unfair. I’ve known people desperate to conceive, who can’t; much-wanted babies who stayed only a short time; people completely unable to care for a child who do conceive despite precautions. It seemed to me that whoever was in charge of assigning the babies was either heartless or incompetent. I called bullshit on the phrase, “Everything happens for a reason.”

Mark and Colby taught me that there may be a greater hand at work.

Unless you have, or someone close to you has, experienced problems in pregnancy, you’re not thinking much about the possibility of problems, which is as it should be. You’re certainly not expecting to go in for an ultrasound to learn that your baby has a fatal birth defect.

Discovering there’s a problem is only the first step in what lies before you. Because then? You have to make a decision. Carry to term, or terminate? You have to weigh your decision against the cost to your soul.

Then you have to follow through on your decision. All the way.

What I know is nobody can make a decision about your baby for you. I also know that if you question the decision you made about your baby, it means you’re human.

In both of these cases, my sister and sister-in-law carried to term. They dealt with strangers coming up to them, patting their bellies, and making small talk about the baby. All the while, they didn’t know if their babies would be born alive, and if so, how much time they would get together. They dealt with the endless appointments and astronomical medical expenses. They dealt with their own fear while soothing that of their other children. They still deal with their own grief.

As far as that greater hand at work goes.

Mark and Colby pushed aside all of my preconceived ideas about The Way Things Should Be With Babies. What’s a lifetime? What’s a success? What is beautiful?

If you hold tightly to your idea of how you think things ought to be, you can miss out on the greatest things happening right in front of you:

  • Mark and Colby were both born alive. Many babies with these defects aren’t.
  • They both were born with hair! And itty bitty feet.
  • They got to be held and loved.
  • They brought the family together in unexpected ways.
  • Their brief lives were welcomed and celebrated.

We’re all left with many questions unanswered. Lots of Why’s. But if all our questions were answered in life, what would be the point of seeking? What would be the point of anything? Rarely is there an immediate answer to any Why. Why gets answered later, in its own time.

I’ve heard that grace is when god does for you what you can’t do for yourself. This, to me, is that greater hand at work. I still don’t use the phrase, “Everything happens for a reason.”. Yet I am at peace knowing that there very well may be reasons that simply haven’t been revealed yet, and I’m not actually entitled to all the answers.

You never “get over” something like this, whether you are a parent, grandparent, friend, or other relative. You are forever changed.

Beth and Dave, Jeff and Melissa, thank you. Thank you for your grace.

This post is a call to action to all of you: make today count, whatever that means for you. Always make today count.

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Blessings and Tonys and Zombies

My sister is here for a visit this weekend, with Tiny Nephew and Slightly-Larger Nephew. It’s excellent to have them here. CC and all the kids are thrilled because they haven’t met Tiny Nephew before, and we don’t get to see most of my family more than once a year, tops. I’m happy to report that Tiny Nephew still has itty bitty feet.

The Puggle and the Fuggle are fascinated by the sounds Tiny Nephew makes. They like that he’s small, and smells like milk and poop. They’ve found a kindred spirit.

CC and I both had to work two shows yesterday right after they got here, but my sister kept me updated with pictures. This is the one that broke my heart:

The clown, the baby of our family, bacon-crazed, never-serious #5, with Tiny Nephew, sitting up straight, being responsible, resting his hand on the baby’s belly. I showed it to someone at work and she asked, “When did he grow up?” and I said, “Apparently, right then, when he had someone to be older than.”

Yes, they keep asking for a baby. No, we’re not going to have one.

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CC and I have a party to go tonight for his work.

We both have pretty cool jobs. Speaking for myself only, the fact that I have this job is proof of some benevolent force working in the universe because if I had the job I deserve, it would likely involve cleaning up after an exploding whale.

Last night a man came up to me at the end of the show and insisted that my main speakers hadn’t been on all night. He had an English accent so he already sounded smarter than me. I told him I’d check it out, but I think he was looking for a different answer, because he wouldn’t leave.

English dude: You must believe me. I’ve seen it three times. Your speakers weren’t on.

Me:

Because really, I’ve got nothing for that. Nothing at all.

The Tony awards, the reason for tonight’s party, don’t mean much to anyone except to the people that work in theater. Okay, let’s be honest: Theater doesn’t mean much to anyone, unless they work in theater. There is a small and mighty cross section of die-hard fans across the globe, small being the key word.

When CC was touring with Phantom in the 80’s, the crew once exchanged house seats for tickets to a Space Shuttle Launch. That’s badass. By the time I got on the road, it didn’t matter how big or high-profile the show was, nobody had heard of it.

I toured with Aida (the musical written by Elton John and Tim Rice) and largely, if people recognized the name, they thought it was the opera (by Verdi). If they saw the commercial, they thought it was about interracial love.

*sigh*

Loading out the Hairspray tour in Providence, sun coming up near the end of a twenty-two hour work day, a minivan pulls into the alley and flags me down.

Me: Yes?

Woman in Van: Are you with the Wiggles?

*sigh*

It ain’t rock’n’roll, that’s for sure. But once a year we get a shot on prime time TV. Broadway has some ridiculously talented people and you should tune in tonight, CBS at 8pm EST, and check some of them out. You won’t get to see the stagehands though, unless something goes horribly, horribly wrong.

CC’s show is up for practically every award tonight. I’m stupidly excited for them.

The first Tony for Sound Design was given in 2008. My two very favorite sound designers are up for the award tonight, my designer (Steve Kennedy) and CC’s (Brian Ronan). I have a million people to be grateful for, but I am deeply, deeply indebted to these two men. Without them, all this would have been a very different story.

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Last night I dreamt of zombies. It was one of those dreams where you look around and you gradually see that the situation is worse than you first thought, and you realize that you’re the only one who knows it, and you keep looking around and all of these very normal seeming people are actually all zombies and they get more and more zombie looking and therefore more dangerous every second, and one, who had been holding my hand was suddenly grabbing my wrist and he twitched and I recognized him for what he was and started punching the crap out of him.

CC, springing straight up in bed: Jesus Christ!! WHY ARE YOU PUNCHING ME?

Me: ZOMBIE! ZOMBIE!!!!

CC: STOP PUNCHING ME!

Me: I HAVE TO, YOU’RE A ZOMBIE!!!

CC: STOP! I’M NOT A ZOMBIE! WHAT’S WRONG WITH YOU?

Me:

Because I had nothing for that, either.

And now, I have to go see if I fit into any of my party dresses.

Tell me about your blessings, theater opinions, or zombie experiences.

It All Started Out With Bad Directions

#1 had a doctor’s appointment today and I looked up the directions for her. In my defense, I didn’t do anything to her that I wouldn’t have done to myself. Had it been me driving, the same thing would have happened. Well, up to a point anyway. She got lost, missed her appointment, and it’s my fault. So here are some pictures, a little visual salad of my past week, while I wait for her to find her way home again.

#2’s Choir concert. She’s in the front row on the far right. She was good, and she looked like she was having fun up there (neither one of those really comes through in the picture). I harassed the tech guys (adults) at the booth during intermission and gave them our info in case they need any help. They looked kinda relieved. I’m not quite sure what I’ve gotten myself into.

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Casey, listing to starboard on a basket of clean laundry. She gets more sausage-like every day.

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Gratuitous Tiny Nephew baby foot picture.

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These are shots of the room that #3 & #4 share, before we spent a few hours on it. Believe it or not, this wasn’t that bad. We gathered four baskets of laundry, two bags of trash, and two bags of donations.

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Action shots of the puggles unmaking my bed. Casey wraps up like a burrito and Jack jumps on her head and then they bite each other’s faces through the bedspread. Neat.

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Picture my sister sent me on my phone. Look familiar? Slightly-Larger Nephew strikes again.

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Herbs that CC planted before work. This makes me very happy. We have a bajillion deer and planting in boxes on the deck is the only way to keep plant things from being eaten prematurely by animal things that aren’t us.

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And finally, the silver Mystery Utensil my mom gave me for Mother’s Day (I had to have my sister mail it to me because I was flying with only a carry on bag and I was sure it looked weapon-like, considering how bothered they were by my tea canister on the way out). I know what it is only because my mom told me when she gave it to me. This thing was the highlight of my Memorial Day. Anyone here know what it is?

That’s all I got.  Happy Wednesday!