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.