Friday, July 16, 2010

Ethan's Birthday

My Ethan turned 7 yesterday.

I'll let alot of you who know me...who know what has happened for 7/8 stop and take that one in.

So I remember Ethan being born. I remember going through the tension of the birth and the tension of everything and remember holding him and thinking: I don't even know where I'm going to live in a month.

It feels like not much has changed in 7 years. Still trying to figure out where my address will be in September and living on the razor's edge.

Then again, so much has much it hurts. A lot of joy and pain. A lot of living.

Ethan is the gentlest of spirits with profound gifts. He's got big eyes that get bigger as he tells a story. He sings - oh my, he can sing - and every day, he goes and noodles on the piano, finding thirds and playing with a strange moving left hand against notes with his right.

But Ethan's greatest gift was given to him. He has a heart for Christ that is really different from any of his brothers or sisters, different from any kid I've met. He talks about Jesus all the time.

We're throwing the baseball and I keep telling him to stop flinching at the ball. And stop waiting for it. Step towards it and catch it. "Like Jesus, right dad?," Ethan offers from his "Little Visits With God" head, "we have to reach out to him and not be afraid?"

Yes Ethan. We have to.

Tuesday, July 13, 2010

Everything Would Not Be Better

There's nothing rational about writing a note to your dad in Heaven on Facebook. I think it just shows what you're doing, which is trying to show everyone the hole in your insides so that they can...something.

Because what everyone's going to do is the only thing everyone can, and that is to tell me that hey, 77 years is a good long time. And Zoe wasn't supposed to be around too long.

These are both true statements. I'll even help with the true statements: Dad was so frail that I was afraid I'd break him when I hugged him, which was just strange. My favorite explanation of Dad's athleticism was when he assessed Andreas and me: we were better athletes. We played more sports well, had a wider muscle knowledge of lots of different things.

But, he said, he knew he could beat us in a race. Him in his prime, it wouldn't be close.

All bravado? I don't think so. I saw him run. And I also think he was being generous with his sports assessment. The point is, this was a guy who wasn't just good, he knew he was good and he was plainly unafraid-from a physical perspective-of anything.

So hugging him and feeling like I could snap his ribs wasn't right. I'll throw that in on our list of reasons it's grand Dad and Zoe are gone.. I'm of course not even mentioning how good he's got it now, and Zoe. How his heart only had to be broken for four days - four days from Zoe going home to his death.

I have no idea why I keep crying. Just all these jagged edges sticking out. Pride and pain. Missing. Dad and Zoe both had sweaty heads. So if my head sweats, I break down because I'm them and they are me and yet they are gone and I'm here and nothing is right.

Nothing would be better if they were here. I'd be sleeping less, owe a lot more. I'd be crying about their physical state.

But nothing is better now that they're gone. Not sure where to put it. Turns out the fist-sized hole in my wall was as cathartic as a Facebook post.

Help Is Hard

I didn't make this up.

I got a call sometime in the last three years from a guild or something at church. The holidays coming up and all, so maybe you all would like a Thanksgiving dinner? 

I'm kind of a food snob, but honestly, with Jen in the hospital and just so much going on...we were swimming in so much...I was actually interested. Sure. A holiday dinner would work. And it would be kind of comfort food. 

They said to swing by on such and such a day to pick it up.

So I did and I got a frozen turkey and some boxes of stuff. Ta-da! Help!

Quickly...I don't fault the church or anyone. We were given something, and it was very nice. It was. It's just a great thought for all of you who are caught staring at a person in pain, and you're asking them if you can "do anything." "Is there anything I can do?" "If there's anything I can do."

For those paralyzed in pain, lost in shame, being specific won't come easy. You are the helper. Do your best to give something beyond a frozen bird. Love specifically. Love recklessly. 

Friday, July 09, 2010


Caleb has Trisomy 18. Jen spends a lot of each day checking her Facebook and hoping he's ok. In this video, you'll see he's pretty ok.

Oh, by the way, the Social Security Administration denied Caleb's parents for Social Security. Because the SSN doesn't understand what is needed to care for a Trisomy 18 baby - he's practically dead, don't you know - they denied the application.

Thursday, July 08, 2010


Jen and I have been spending a good amount of time on our laptops. We sit in bed next to each other on our laptops. We'll comment on things to each other and then on our laptops. For me, it's work. I'm handling some grassroots stuff on a volunteer basis for a friend.

Jen's staying connected to the other moms of Trisomy babies around the world.

I have to admit that I just want her to stop. It breaks her heart. It frustrates her, it drives her crazy. She reads about children being denied medical care because they have Trisomy. About an 18 year old mom who doesn't know what to do.

More than once, Jen has asked, "C'mon. Can't one live? Can't we have one?"

Mostly, the answer is no. Today, sitting at my computer and complaining silently about all of the work I'm doing while being unemployed, I witnessed the birth and death of a Trisomy 18 baby named Cathal.

I don't know Cathal from anyone. Just I know it's not fair. This isn't fair.


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