Mondays aren't so bad anymore

How do I summarize the past couple of months? Well, it's Monday, and I don't have knots in my stomach, and we're not heading to Hopkins pediatric oncology clinic. That says a lot, right there. (By the way, we have remained at Hopkins for Matthew's care - it's a long story for another time.)

Over the past couple of months, things have been blessedly quiet in one sense (no sudden medical surprises to knock us off our feet) and happily busy in the way that many of your lives are and ours used to be. We did manage to get away on a spectacular 12-day vacation (Danny's fever be damned) to British Columbia - Whistler Resort, Pacific Rim National Park, Ucluelet, Victoria, and Vancouver city. We hiked, mountain-biked (highlight of Matthew's trip, low point of Jon's), kayaked, horsebacked, fished, zip-lined over raging river canyons, observed bald eagles, herons, sea lions, and even a lone black bear.

This was our first real vacation, without anything hanging over us, since Matthew's diagnosis in February 2005. It was gorgeous and restorative - a splurge we felt we deserved - and we had a wonderful time.

We arrived home and headed to Hopkins the next day for the monthly blood tests and the every three month (two-hour) MRI. Got the wonderful news that evening that all the tests came out clean. Two days later, Matthew returned to school, rejoining his 10th grade classmates. There wasn't a happier 10th grader on the planet. There were no happier parents on the planet.

So, here we are, seven weeks later. I can't really speak for Matthew in terms of describing what it's like for him to be back at school. I know he's thrilled to be back with his friends and back in the place he loves. I also know it's very hard for him to function with his degree of hearing loss. In school, he receives written notes and uses an FM system - a transmitter that the teacher wears around his/her neck, that transmits wirelessly to Matthew's hearing aids. This definitely helps in class when the teacher is talking (although it leads to some humorous situations, such as when Matthew steps across the hall for a bathroom break and can still hear the teacher's voice booming in his ear). However, it doesn't help with class discussion or small group work - or in the normal social interaction that takes place in the halls, the lunch room, and the classroom.

Matthew says it's a tremendous challenge to interact socially. One-on-one conversation is fairly manageable, but with a third person added to the mix, listening becomes twice as hard. With a fourth person, it becomes impossible. It's too hard to keep up with the flow of discussion; it's too hard to keep asking people to repeat themselves; it takes all the spontaneity out of interaction. The problem is that the high school/teen experience is mainly a group experience. So our highly gregarious son is largely relegated to the sidelines - forced to observe social situations, rather than participate in them.

It is for this reason that we are moving toward a cochlear implant (ci). For the past couple of months, I've been immersing myself in ci research - talking with hearing professionals, industry reps, and ci wearers. With the help of some amazingly resourceful friends, we've connected with several late-deafened musicians who are now ci wearers. These individuals have shared their personal experiences with us and helped Matthew understand what challenges he is likely to face as a ci wearer. The bottom line is that a ci is likely to improve Matthew's hearing in speech situations, but will to some degree (extent unknown) impair his ability to hear and appreciate music. Nevertheless, there are ci wearers out there who have been able to train their ear and bridge the gap, who are recording and teaching and earning their living as musicians.

This is a steep price to pay, but Matthew has accepted the reality of the situation. Even with his current hearing, he is able to hear musical pitch fairly well. In fact, he auditioned for and was accepted into Shir Madness, his school's a cappella choir (a source of incredible joy). However, he says there is no point in hearing music if he cannot interact with people the way he wants to. We support his thinking on this and are prepared to go forward with a ci. Our consultation with the Johns Hopkins team is next week - and we have a tentative surgery date set for December 20.

On other fronts: The rest of us are doing fairly well. Danny has gotten off to a great start in 5th grade. He likes his teachers and appears to be doing well. He enjoyed a great baseball season, with his team sweeping every game - until yesterday, when they lost by just one run. The soccer season (with Jon as coach) is still in full swing and going well.

The two moms are both in good health. Jon's mom is back in Baltimore now, after spending the summer on Cape Cod. My mother has a big birthday coming up - and we're honoring her with a luncheon at the end of this month.

Jon & I are still exhausted and just trying to take things one day at a time. Today is our 18th wedding anniversary. It's is a good point to reflect upon our blessings - the most important of which is that we have one another to rely upon for strength and courage and support. I can't imagine how difficult it would be to get through something like this without a supportive partner.

It also happens to be Day 266 post transplant. We count the days, we count the weeks - each one bringing us closer to the magical one-year mark when we can breathe a little easier, so the doctors tell us. It's a difficult way to live. You have to fool yourself, discipline your mind. You have to think day by day, taking one step at a time. You can't look too far down the road, can't plan too far ahead. We're doing the best we can do - trying to create a full, rich life for our family, while at the same time living in fear of what the next moment may bring.

An example that drives this home: One day on vacation, we had just ferried over to Salt Spring Island, a small picturesque island in the Gulf Island chain off the coast of Vancouver. We were sitting having a lovely lunch at a little vegetarian eatery, when suddenly Matthew got a troubled look on his face, said he felt "strange," excused himself from the table and disappeared for about 20 minutes. Jon & I sat paralyzed, watching our food grow cold. Quietly, so as not to worry Danny, he and I asked each other, "Where do you think is the nearest hospital?" "How frequently do the ferries run?" To myself, I thought, "Oh, God, here it comes - the next blow. Just when we least expected it. Just when our defenses are down." In the end, it was nothing. Matthew came back to the table. We spent the afternoon hiking around the island and foraging for blackberries. But the sense of uncertainty, the knowledge that the rug could be pulled out at any second, is always there.

It may come as no surprise to anyone that the High Holidays were particularly difficult for us this year. Jon kept thinking of his father. I kept having flashbacks of where we were exactly one year ago: Matthew standing at Rosh Hashana services one week to the day of his surgery; the mad dash up to Boston two days later to start radiation; fasting and attending services in Newton in between radiation treatments.

Speaking personally, I would have to say that my belief in a force of greater good is pretty well challenged at this point. I had always gone through life with a sense of well-being, trusting that all would turn out ok in the end. That's pretty much gone for me now. Sitting in services this year, I felt angry and abandoned. (Why should I ask for forgiveness? Shouldn't I be the one asking for an apology?) And yet...

I have never believed in a literal God, but to me God has always been synonymous with goodness. Certainly I have seen much goodness in the past year in the spirit of boundless caring and compassion that we have seen again and again in the many individuals who have reached out to us with love & support - in many cases, people we hardly know. That is certainly something to honor, admire & celebrate - and perhaps this is what will allow me to regain an overall sense of rightness with the world. Although this comes late, I want to wish all of you a happy, HEALTHY, sweet new year.