...and then bad news comes again

I woke up yesterday morning to Jason's sudden calling of my name and lights in our bedroom suddenly turned on.

Turns out Moriah was unresponsive--though breathing and fever-free--and we needed all-hands-on-deck.

We hemmed and hawed a bit. Her vitals were good. Her lungs sounded clear. But instinct won out, and we quickly loaded her into the car and brought Moriah to the pediatrician's (by then, she was at least crying and seemed less floppy). We kindly but firmly argued our way through the front desk and into the first appointment. As we sat in the waiting room, Moriah began to improve, and by the time we saw the doctor, we were wondering if we had wasted our time. She seemed suddenly fine. A flu, maybe?

But no. The doctor came in, spoke with us for a few moments, and said the dreaded words: "I see she has a neurological history...what you're describing is a classic case of seizure." (Many of you remember that Moriah suffered from a month-long battle with infantile spasms at 6 months of age, putting her at risk for future seizure disorders throughout her lifetime).

Moriah recovered yesterday; by mid-morning, she ate breakfast and had resumed talking and walking. We've talked with Moriah's neurologist today and he's ordered an EEG for Wednesday afternoon.

After the good news of Moriah's cardiology appointment, we are living again with the unknown, and doing what parents do: keeping fear at bay by staying busy, going about the usual, and encouraging each other with hugs and kind words.

In the busyness of this week--Jason's grandmother passed away mid-week last week, and the memorial service is tomorrow; Jackson's soccer season is begun; we have many appointments as Orilus is moving to a new town and school district (we are working hard to keep the details of his life private, but many of you know by now that he has not been able to live at home with us for many months); my teaching at Gordon College begins Thursday--we can't understand the sense of "one more thing," especially one more painful thing, added to our life.

But things do not always make sense. Life is not pain-free. The future is not certain. Wellness is not guaranteed.

In the truth of all that, we want to be accepting of our life, and angry about the injustice of suffering. We want to be at peace, and to grieve. We want pain to do a work in us that makes us softer, not harder, people.

This is much, much harder than it seems, this abiding-with-God in all things.

"This is a hard teaching," the disciples said to Christ. "Who can accept it?" Sometimes I cannot. But like Peter, we recognize that there is nowhere to run, nowhere else to go, no one else in whom such hope and grace abides.

We appreciate your prayers for us as we run, then, into the unknown--accompanied, we believe in faith, by a loving God--and as we hope the journey produces in us the kinds of life that would make the trip meaningful and more bearable.

at Children's Hospital today

Dear Friends,

Today Jason and I found ourselves on our way to Children's Hospital for Moriah's annual cardiology visit. No matter how much I try to do to create a buffer around these visits (this morning, I treated myself to a caramel macchiato, for instance), the hopefulness I try to carry with me to these appointments does not leave me immune from the sadness that accompanies me, too. They mingle. They always do. Sometimes I think this is grace--not that hope eradicates grief, but that it is manifest within it.

In many ways, the visit went better than expected. Moriah allowed the EKG, counting

each node as it was placed on her chest. She sat patiently through three doctors' exams. And she clapped when we cheered at the news that her heart is so healthy she won't have to re-visit the cardiology clinic for another three years. Amazing. She will be six years old then. I can't imagine her at six, and can't imagine her without cardiac concerns for that length of time. It really does feel miraculous, a great gift (left, in the photo, Moriah hours after her open heart surgery at age 2-1/2 months).

But also. Also there was the doctor who told us that when she went to view Moriah's recent history (in search of her last cardiology visit), her year-long search pulled up over one hundred doctor's visits! She was flabbergasted at all that Moriah has been through, and more so when we insisted that this has been Moriah's healthiest year yet. Hearing that--on average, a doctor's visit every 3 days for the last year--made my heart ache for our little girl, and for all the not-yet that is still our hope for our daughter, and all she has to struggle through to have what many children have at birth.

And also. On the way to the hospital this morning, I called Kori, Eddie's mom, to find out if they were in Boston today, and if so, if there would be a chance of a rendezvous. I have seen Kori frequently this way; in between doctor's visits, we will catch a few minutes in a lobby or a hallway, or we will sit with the other in a waiting room and talk. They were on their way to Boston, too, though our visit did not materialize due to scheduling conflicts and too-long waits for doctors. But Kori gave me some important news: Eddie is featured in today's Boston Herald.

So of course as soon as we arrived at Children's, we rushed to buy a paper, and stood in the lobby and read it. I got to it first, and read it through, crying the entire time. Jason read it then, and cried, too. If you haven't seen the article today, I hope you'll check it out at http://bostonherald.com/sports/columnists/view.bg?articleid=1061154666&format=comments#2992135 It's worth a read, especially as it confronts our ideas about suffering, and justice, and grace. Or at least, mine.

I know Eddie's story; for over six years now, we have raised funds for his family; we know how he is now wheelchair-bound, using a feeding tube, and needing a double lung transplant to survive. And I know ours--we have two more children alive now than we would have without the interventions of Children's Hospital. And standing there in the lobby today, it struck me--as it often does when we're visiting--that there are so many stories there, narratives that are triumphant, and heartbreaking, and ordinary, and extraordinary, and just so very human. How some of us leave those hospitals with diagnoses of hope, and others without them, is terribly mysterious. I saw a mother watching me as I finished reading the Herald today; she was trying to figure out why I was crying, I'm sure, and her eyes went back and forth between Moriah and me, trying to piece it all together.

And I wanted to say, Lady, you have no idea. You will never figure out what we've been through in this place.

Today was a triumphant day for us. We are truly grateful for Moriah's good news; I thanked the doctors so profusely and so emotionally today I couldn't finish my sentences. They saved her life.

And we were also reminded: When hope is harder to come by, when hopelessness stalks people we love, those of us who have been renewed in hope offer some to our friends. We call them back and tell them we love them. We send money and gifts and give hugs and make them laugh. We tell them that though it doesn't seem like it, Love is available, and all around.

That's what has been done for us. Today, we are grateful. Grateful especially because we know too well how undeserved such good news is, how randomly the universe seems to dole these things out, and how mysteriously God shows up through each one of us to love on the other. In light of suffering and hope, it's all we can do to whisper our thanks, join hands with the waiting, and feel again the blessing of a daughter who is with us still.

(If you'd like to donate to Eddie's Fund this month, please visit www.eddiesfund.blogspot.com)