Objects in Mirror Are Closer Than They Appear

“Let’s just do it, and be done, and get on with our lives, and then it will all be just a memory.”

Four hundred and something days ago we made that decision, one of the hardest ones of our life.

Three hundred ninety-eight days ago they cut open my husband’s chest and let a machine breathe for him and pump his blood. My husband was Darth Vader for six hours.

It seems so much longer ago than a year. It feels like it happened in some other dimension, a fuzzy place we can barely bring before our minds’ eyes, a place called not June but Before Anna. A barely perceptible speck in life’s rear-view mirror.

I think of it every day, of course, and yet give it little thought at all. I thought this anniversary would feel more significant—though I’m glad it didn’t since that’s a sign that all’s well and we made the right decision.

Still, I thought about it as the dates passed and as we walked around doing the things he struggled to do last year. I remembered how it felt last year to have to cajole him into going, reminding him it would be good for him to get out of the house, and how it felt to walk as slowly as he had to and try not to show I was keeping a nervous eye on how hard he was breathing. What a contrast between that and how now he says, “I’ll get the little girl!” and swoops her up to his shoulders, carrying her proudly to greet people and point at dogs, skipping to make her laugh.

Like the physical scars, the memories and feelings of the June lost to surgery are hidden most of the time. They are a new feature of our history that we don’t examine much now that they’re healed over. You have to pull back some layers to see the scars. But once in a while they catch my eye. They surface in the dull ache in his chest some days, the tick of his mechanical valve at an unexpected moment, the familiarity of hospital waiting rooms, the taunting what-ifs of concerns over health insurance. But they are covered most days by the proof we reached the other side—the joy that was set before us, in a picture on a bedside tray, that got him up and out of bed and all the way to Ethiopia—the living, running, giggling proof of life beyond surgery, beyond Marfan’s, beyond ourselves.

Even though they have faded, those scar-memories are with us. And they are good. They have changed us and taught us much. So it is good to remember.

But it is better to go out and live.

Marfan Story on Today. (Too Much Air to Fill on MSNBC.)

Okay, apparently you were all too traumatized by my honesty to comment. That's okay. I am traumatized by my honesty myself sometimes. And Lord knows my husband is. (He previewed and okayed that post, though, FYI.)

Anyway, just wanted to note that the Today show aired a story on Marfan this morning. It's pretty general and the "interview" at the end is really rushed, so the article I linked to yesterday is more informative, but it's good media attention anyway. You can find the video on the Today website under "Video from TODAY."

From the video page you can also learn about a girl who craves eating metal, why Santas are urged not to say "ho," and about a woman who found an image of Jesus and Mary on a pancake. No word yet on why it sold for $338 on eBay, why this is news, or what keeps the anchorwoman who had to read the story on MSNBC from pulling a revolver from behind the news desk and demanding a few Hail Marys and a huge raise from her boss.

Marfan and Remembering Eye Surgery

Thinking about this time last year and Marfan Syndrome today. The Boston Globe had an article on Marfan, "Old Drug Offers New Hope Against Disease." It does a good job explaining how Marfan affects the body and some promising new research.

Many of you know that Aaron has Marfan and in the last year required eye surgery and heart surgery. November 9 is the day we saw the specialist and decided to go ahead with surgery on the 15th. (I know these dates well from my insurance saga.) Although this decision was a thousand times easier than the heart surgery decision, I was far more scared going into the eye surgery. I just never thought God would let my husband die that day in heart surgery. To be honest, I wasn't so sure he wouldn't let him go blind. And I didn't want to find out what would happen if he did--to our life, our plans, our faith.

It sounds silly to say it seemed "easier" to face the possibility of being a widow than the possibility of being the wife of a blind man. Obviously I would prefer to grow old with my husband, in sickness or in health. That was our agreement and all. But everyone knows what to do with widows. Maybe not how to execute it perfectly but the general idea of how to help them grieve and go on with life. No one knows what to do with a blind youth pastor. Including me. I think I had more faith in my ability to survive on my own than my ability to help him survive.

Whatever the reasons, I had trouble being open to the possibility that God might let the surgery be unsuccessful. I really, really had to rely on other people's prayers, because they were braver than mine. Mine were kind of passive-aggressive: I'd tell him how he could decide if he wanted to make a terrible, terrible mistake. Here is some of what I journaled the night before the eye surgery:

At times it has been overwhelming to think about the “what ifs.” But the support has been incredible. . . . Last night at the end of Young Life everyone huddled around Aaron to pray. The kids are amazing. [Kid you would not expect!] prayed the most beautiful prayer: “Aaron always asks me the most amazing questions; he has made me think about so many things in my life that I never thought about before . . . Bring him back so he can ask me more of those questions—and look me in the eye when he’s doing it.”. . .

It breaks my heart to think of Aaron not being able to serve those kids like he is . . . I know God would find an amazing, surprising way to be glorified . . . but I am terrified of being asked to do that. I don’t know if I could be good enough at holding him up. I don’t know if he could keep the faith or if I could bear it if he couldn’t. Part of me is sure we would find the grace . . . but mostly I just don’t want to be that holy. I know this is no super-spiritual attitude—feels like I should be saying “Whatever you want, God, is fine by me”—but that’s not really true. Of course he has the right and I want to be obedient and even be glad to be that obedient. But honestly I don’t want that. Yes, I’ve told God this, since he already knows. And I think if I understand him correctly (okay, I don’t even come close to understanding him, but humor me here), he’s been leading us all along to SmallPort, to youth ministry, to adoption . . . I don’t think he wants to change all those plans all of a sudden. I hope not anyway. Aaron is so gifted at what he’s doing. I want us to bring home our baby and I want him to see how beautiful he or she is. God, you aren’t going to let all this go to waste, are you? See, I have conflicted feelings—yet I am finding peace. I am being held up. I am being brought to the feet of Jesus by my friends who have faith for him to see. On him we have set our hope that he will rescue us again . . . so that many may give thanks on our behalf for the blessing granted us through the prayers of many (2 Cor. 1:10-11).

I wonder how many times I have clung to that verse in the past six years. I wonder if I'll be braver the next time we face something big, after all we've seen by now. But maybe I don't have to be--maybe just being honest and letting others carry us is enough, whether it's the first time or the twelfth or the the two hundredth.

Oh, we are not as strong as we think we are.

The Only Way Out Is Through

God is good, all the time.

What a long, strange trip these past couple of weeks have been.

We had our garage sale, and we got closer to (paying for) bringing Anna home.
We had Mother's Day, and strangely enough I was validly wished a happy one.
We had a court date set and high hopes of seeing family and friends on our way to Ethiopia in just a few short weeks.
And then . . .
And then . . .
Why can't we just be happy and excited for one week? Why does something always have to go wrong? Seriously, God . . . what the heck?

Aaron went in to his cardiologist for a routine visit to get his meds updated. The doctor read his charts and a test from last summer and went to check something. When he came back, he recommended surgery. As the kids say . . . WTF?

We waited through the week to get set up with an appointment and go up to Portland for more tests and consultation with a surgeon experienced with Marfan Syndrome. When three doctors (or are they lawyers?) walk in the room, you know they mean business. They determined that Aaron's aortic root (where the main artery, the aorta, comes out of the heart) has expanded right to the point where the risk increases so much that they recommend surgery.

Thanks for noticing that, you know, last summer.

Then again, thanks for not noticing, or we wouldn't have Anna.

The surgeon said he should get it taken care of and there's no reason to wait. Uhh, that you know of. I got one, how 'bout this: We're adopting a baby. In about 6 weeks. In Ethiopia.

Long doctoral pause.

Oh.
Wow.
Hmmm.
"First let me say I think it's wonderful you're doing that." Yeah, you're just stalling now, doc.

We talked about how the adoption process works, how we wanted to travel in six weeks and how little control we have over the process. Could Aaron travel first and have the surgery late July? He said wasn't his first choice but didn't think it was crazy to consider; he wasn't ruling it out. But . . . it adds risk. How much risk? Unfunny thing about Marfan Syndrome: no one really has any idea. We talked about surgery late July, but we needed to think about it and he wanted to show the tests to more people and think about it. We'd talk Monday. Fair enough.

So, that'll kinda put a damper on your big baby party weekend.

Some people seemed to think this was a no-brainer decision, but trust me, it was pure agony. We wanted to get Anna home as soon as possible, as everything had seemed to be lined up perfectly for, and to share the incredible experience of traveling to Ethiopia for our first week together as a family. And most importantly, we were terrified that doing surgery before court or even just the agency finding out about this before court would jeopardize our ability to bring her home at all. Then there were all the other summer plans so long anticipated and worked for and prayed for: for Aaron to lead the teenagers he's been growing so close to all year at Young Life camp, for him to be in his friend of 20 years' wedding, to see our distant family members and friends . . .

I had a brief conversation with the doctor Monday, we kept thinking and talking with a few wise friends, and our pendulum began to swing from we'll wait to we won't wait. But the doctor still hadn't looked over the tests again, so I stayed by the phone the rest of the week. Or rather the phone stayed by me. Seriously, I took it to the mailbox and the bathroom. That kind of companionship will make you crazy.

Last Friday we finally had a real conversation with the surgeon and decided to do the surgery Wednesday, June 6. They will replace a section of Aaron's aorta with a plastic section. They will also either repair his damaged valves at that spot or replace it with a mechanical one, in which case he'll be on blood thinners, so we are now hoping for a repair job. He will be in the hospital about a week.

The doctor said the soonest he could possibly travel would be 4 weeks, but they say 6-8 weeks for full recovery. People keep saying their 80-year-old grannies were out riding motorcycles after 60 days or whatever, so we'll see. When we heard our court date was successful, I told the agency about our situation and they were extremely supportive--big relief. I am sure they will work with us on travel dates but we haven't gotten that far yet.

I don't think I have ever been as stressed as I was that week of waiting on the doctor and deciding. Even my body was revolting, and I don't just mean how I looked. Aaron has been having trouble sleeping, and although part of the load is lifted with court done, this is still an anxious time. We trust--somehow inside us we know--God will bring us to the other side. But that doesn't make it easy. It's a rough road ahead, but the only way out is through.

All the time, God is good.

“You can’t conceive, nor can I, the appalling strangeness of the mercy of God.”

—Graham Greene