Scabs...

Tonight, October 27, 2006, the second of two scabs finally fell off completing now another round of extraordinary events with our daughters Rena and Sophia. Soph, who was first to see the world was the last to lose her cochlear surgery scab. Rena’s dropped yesterday, or rather snagged on the carpet as I changed her diaper and finally relinquished its grasp after weeks of adherence. They have healed for the most part. They are responding to more and more sounds daily. Over the last weekend I clapped as they were crawling away from me with their backs to me. They both stopped, turned, smiled, looked at me and clapped their hands in response. How cool is that!? It may not seem like such a big deal, but believe me; it’s huge! That small response shows that they can put the sound with its source. They have identified it. They’re getting it! And now on top of that their scabs have fallen off.

So tonight I’ve stayed up too late for a Dad whose girls will be up bright and early Saturday morning and I’m stuck thinking about scabs. Vicki and I up until last year for the past five years have been working in the Dominican Republic and Haiti. Our plan as we were pregnant in the Dominican for the first six months of our pregnancy was to return to the states, give birth, and return to the DR with our girls. At the very least, our immediate plans were adjusted.

The girls came frightfully early… two and a half months, in fact. They spent 8 weeks in the NICU. We almost lost them on the second day, a detail that somehow escaped us even though the nursing staff (some of which are dear friends) and others directly involved assure us today that we were told they would likely not make it (Vicki was still coming down off her meds; I, however, had no excuse). What we would find out later is that our home church in Santiago in Hoya de Ciamito was on that treacherous day lifting our entire family up during a 24 hour prayer vigil dedicated specifically to the girls’ survival and well being.

The girls seemed to be faced with one frightening possibility after another, Sophi in particular. Sophi had three cists on her brain (possible evidence of an in-utero brain bleed) that might mean brain damage, developmental delays, etc. etc., she got an infection through her pick line and went septic requiring strong courses of anti-biotics, she required lasics on a few occasions to get fluid off her lungs. Both started out on the vent; between the two of them they had five blood transfusions; they had to be taught to suck, swallow, and breathe; they failed their hearing screenings and were referred to an audiologist. Before we left, Soph got an MRI to see if she had suffered any brain damage; it was fine. Finally, we came home and Soph came with oxygen and an apnea monitor.

We thought we were finally out of the woods, mostly. We were still planning on the prompt return to the DR. At our first pediatrician check-up the doc found a hole at the base of Sophi’s spine that the neonatologists had somehow missed as did we. There was some fear of spinabifida so we quickly got another ultrasound to see if the hole was connected to her spine. No, it wasn’t. One last hoop to jump through, we thought.

Tuesday, November 15th was a shattering day. Our visit to the audiologist confirmed what we had feared and hoped against. The girls were not just hard of hearing. They were profoundly deaf. It is interesting to me that given all that we had endured and all that the girls had survived that this reality proved so devastating and demoralizing. There was much worse that could have been that was not. There was much that other parents and children had suffered and do suffer that we were not faced with. Perhaps it was that there were so many near misses that we had expected that we and the girls would get out without a scratch. Whatever bullets we may have dodged, we caught this one and it hurt.

It hurt because it would mean more obstacles for the girls. It hurt because it meant more obstacles for raising them. It hurt because it meant our plans to move to the DR and Haiti with them were on hold. It hurt because in spite of what we were spared, the God we serve gave us a taste of what it was to suffer.

It has been difficult to wrestle with the long-term implications of prematurity. It has been equally if not more difficult to wrestle with the implications of deafness with or without the aid and benefit of Cochlear implants. We did not sign our girls up for this, the surgery, the therapy, the specialists, the batteries, the equipment, the maintenance. But we were all signed up none-the-less.

Stanley Hauerwas is one of my favorite theologians. When the girls were still in the NICU I picked up an anthology of his work put together by a medical doctor, a nuerologist, if I remember correctly. It’s entitled “Critical Reflections on Stanley Hauerwas’ Theology of Disability: Disabling Society, Enabling Theology.” I discovered it online and picked it up immediately because I thought it might help prepare my heart for the road ahead not knowing then what the future may hold (as if today I do?). In one chapter he states:

“Necessities force us out of our paths of least resistance, and, as a result, they make us more likely to form communities that know how to care for one another.”

Part of what Vicki and I have mourned early on was the death of the illusion of normalcy, normal kids, normal family, normal, normal. Whatever that is. Let me put it another way. We were heading down the path of least resistance and discovered that the road was blocked and the only way forward was not what we had expected or hoped for or even considered as a possibility. It was an unpleasant surprise and it cut us. It exposed buried expressions of our selfishness, our self-righteousness, our arrogance, our idols, and our immaturity. The path of least resistance makes this kind of baggage easy to tote. Tougher trails require less ballast. You’ve got to learn to let it go or be bogged down by it. That was the terrible and difficult surgery of heart and spirit we have really had to endure in this journey so far.

But we’ve been healing from it. Healing from the bullet we caught and from the uprooting of junk still hiding in our hearts. We have discovered and are still discovering a depth of love and compassion that we would not have otherwise experienced. We are learning to care for our girls and for others in ways that we would have been incapable of before. Our girls are our girls, precious gifts on loan from the Creator of all things who expects us to make good on his investment. We’ve learned that we’re far richer for traversing a path that is sometimes uphill, unpaved, uneven and winding. We’re getting to the place where we would not have had it any other way. Our scabs have fallen off too. I’d show you but I didn’t get a picture of them. I’m sure there’ll be more to come.

At any rate, thanks for traveling with us. Your concern, your love, your prayers... we feel it all and it is deeply appreciated. Thank you.

In all Things, Peace,

Jeff