One Year Later

Tonight is the first night of Chanukah, a holiday that commemorates miracles. This is a theme that is very real for us.

Today marks the one-year anniversary of entering the hospital for stem cell transplant #1. On this day, a year ago, both of our cars broke down en route to the hospital - one in the driveway, the other on the way to the hospital. On this day, we found ourselves stranded on I-95 near Elkton, Maryland, awaiting rescue, while engaging in heated cell phone discussion with the Johns Hopkins admissions office, who threatened to turn us away at the door because they wouldn't accept our insurance approval. Meanwhile, Matthew was outside spinning around on the slick pavement, inspiring the "Skating on Thin Ice" episode (blogged on 12/18/05).

One year ago, in the hospital, I remember trying valiantly to evoke some Chanukah spirit by wrapping the door to our room in shiny paper and blue & white garland. Matthew got out of bed to help me, but he was too weak and the exertion made him throw up in the hallway. Later that evening, Jon & Danny joined us. We lit an electric menorah together, sang songs, and exchanged gifts. The first night of Chanukah happened to coincide with Christmas day. Even the import of the double holiday could do little to dispel the depression that pervades the Johns Hopkins pediatric oncology unit. Despite the tree in the entrance and the special sweets in the family lounge, it was a gloomy day.

Fast forward one year later. Yesterday, Jon & I attended parent-teacher conferences for the first time in two years. We were gratified to learn that both boys are doing well in school. Big fifth grader Danny reportedly seems to be in a good place academically and socially. Matthew's ability to ease into 10th grade seems like a miracle given his missing the prior three semesters and the extent of his hearing loss. It is no less a testament to his teachers, administration, and classmates, all of whom have provided tremendous support.

Another miracle: Last evening, Matthew returned from a very special, extremely generous four-day trip to Orlando, courtesy of Chai Lifeline, a wonderful organization that supports families facing life-threatening illness. He was one of 44 kids on the trip. Last year, he was eligible to go, but too sick to travel. This year, he was able to take this much needed break (although, it should be noted, the trip has significantly set him back in school to the extent that it may require a miracle to catch up!)

Yesterday, we spent a long, exhausting day at the hospital, trudging through three appointments - pediatric oncology clinic checkup and blood draw, audiology appointment preparatory to the cochlear implant surgery now only two weeks away, and a one and one-half hour spine MRI. The MRI experience really put us over the edge - and we didn't get home until nearly 8:00 p.m. But the essential thing is that by this morning, we were able to rejoice that the test results were all normal. The way is now completely clear for cochlear implant surgery.

A short while ago, we returned home from a small, informal Friday evening Shabbat service/Chanukah celebration in which Matthew played guitar and sang harmony in a small teen combo. Given the extent of his hearing loss, it seems like a miracle that Matthew can participate in making music. This evening, we lit the first Chanukah candle and said the customary blessings. The second blessing recognizes "the sovereign of the universe, who performed miracles for our ancestors in those days at this time," and the third blesses God "who has kept us alive, sustained us, and enabled us to reach this season." Both of these certainly hit home.

So, here we are, marking a milestone. Once again, I'd like to quote the same passage I quoted last year:

Hanukkah is not just some celebration of miracles performed in the past.
Neither is it just a commemoration of righteous people who lived in the
distant past. It is a guiding light for people from all walks of life, from
all eras in time, to see through the darkness of their personal lives and to
become a part of history. It is encouragement for those who face
insurmountable odds as a result of personal history. It is a declaration
that God will perform miracles for us when we courageously stand up for
battle. It is inspiration for us to be our own Maccabees in waging our inner
battle." (Rebbe Nachman of Breslov)

In the next year, I hope we will all continue to rejoice in miracles, but what do you say we take a little break from insurmountable odds?