Have you ever heard of the fable of the Lobster?
It goes something like this. A lobster is a crustacean. It has a hard outer shell that protects its soft inner body. But the shell is unable to grow, so as the lobster grows, the shell gets tighter an tighter, until it is less of a protection and more of a constriction. As a result, the lobster has to go hide from predators and shed its shell, and a new shell replaces it while slowly calcifying. The lobster, in essence, has to regroup in order to prepare itself for the future. I recently was reminded of the fable from a video by Rabbi Dr. Abraham Twerski, that you can watch here in ninety seconds.
In May of 2008, right before Mother’s Day, we were told that Wendy was going to need a kidney transplant.
At that point, Wendy had been in the hospital for 180 days out of 360. We had figured out that since she was four, that it was roughly one eighth of her life. She and I had moved closer from our home in Vermont to Charlestown, Massachusetts, to near her medical home, Massachusetts General Hospital. She was on a dozen medications that she took by mouth in different combinations every day. She was getting insulin shots six times a day. She was seeing doctors twice a week and a visiting nurse once a week and she was getting blood draws a little more than once a week.
We had managed to use up all of our resources and reserves, physically and emotionally. Our parents, Wendy’s grandparents, needed a break from being co-caregivers and needed to get on with their lives. We had friends who stayed for a week at a time to help out. We needed more than that. We needed to get an au pair. So I set off in search of one. Luckily, in Boston, there is a company called Cultural Care Au Pair, and we found a match quickly. She would be coming a few days after the Fourth of July holiday from Russia. Her name was Irina.
Michael and I had been under intense pressure. He continued to work in Vermont to cover the medical insurance. I continued to live with Wendy in Charlestown. He would come down on weekends. It was unbelievable how much our lives had changed from the Father’s Day 2007 when Wendy said her stomach hurt. If you had told me what our lives would have looked like in a year from that time, I would have thought you were crazy.
Michael and I knew that we had to shore ourselves up emotionally for the next year, because a kidney transplant is no walk in the park. It was likely that our lives apart with a sick child would continue into the indefinite future. So we both thought about what we needed to get ourselves together emotionally and we had a talk. (You can read about how we set down ground rules early on in the journey in this blog post on communication.)
Michael wanted to take time to help his best friend from childhood move out to Vancouver. It would be ten days total, he would go down to Maryland to help load the van and then drive it across the country and up into Canada. Then they would unpack the truck and Michael would fly home. It would take about ten days. The two of them had traveled cross-country before, going to National Parks one time along the north of the country, and one time along the south, so this would be reminiscent of their trips together as teenagers. Though the work was hard, packing, moving, unpacking, and driving in a less-than-comfortable truck, honestly, who wouldn’t want to spend ten days with their best friend as a way to re-set themselves for the hard times ahead? The two told stories, drank beer on the roof of the truck while they watched the fireworks on the Fourth of July in Bozeman, Montana, and they joked and had a good time. It was what Michael needed to prepare for the next medical event.
While Michael was gone, I decided that I wanted to fly to Europe for a long weekend. I know what you’re thinking: who actually does that? My rules were simple. It had to be over a long weekend, after the au pair arrived. I wanted somewhere where I could do a lot of walking and go to a lot of museums. I wanted two non-stop flights so I didn’t spend all of my time in airports instead of the city. I wanted a real escape, somewhere where no one knew me, where I didn’t have to tell my story, where I could just blend in and be another tourist.
The answer was Paris.
I booked my ticket for the first long weekend in August. I used all of the points we had earned staying at the Holiday Inn near the hospital to book a modest room at a hotel in the Saint Germain du Pres district, not far from the Luxembourg Gardens. I was flying overnight on a Wednesday, so I would have Thursday through Saturday and fly back on Sunday to the States. I also emailed Michael’s aunt and uncle who live in England, and they agreed to meet me for part of the time.
When the time arrived, I packed lightly. I didn’t want to have anything bog me down. A few skirts and shirts, a pair of pants, sturdy sandals. I knew that Michael could handle anything, he had my parents and Irina to help. I also knew that when I arrived back that we would be doing immediate battle with the insurance company. They had rejected our application for a kidney transplant at Massachusetts General Hospital because they had a contract with Boston Children’s Hospital. Actually, they had rejected the application twice. On the Tuesday when I returned we were going to be on a conference call with a review board of the insurance company along with our nephrologist who was calling in from vacation in India, another doctor calling in from vacation in England, and a few more who were in Boston. The idea of suddenly having to transfer care to a hospital that we had virtually no contact with was terrifying, and our stress level was high. I needed to get away more than ever.
I kissed my family, went to Boston Logan, and got on the plane.
When I arrived at Charles Du Gaulle, I bought a Paris museum pass. This was entry to all of the major museums in Paris, without having to wait in lines. I took the RER in from the airport to the center of the city of Paris and walked to my hotel to drop my bag, as my room wasn’t ready yet. Then I went to one of my favorite spots: Notre Dame.
Notre Dame is really as beautiful as people make it out to be. Large and gothic, you can see how the architects and builders designed it to showcase the greatness of God and gain converts. The stained glass windows are the envy of the rest of Europe. It is simply magnificent.
One of the first things I did was stand on line to put Wendy’s name in for a mass to be said in her honor. It was a few euros for the charge. The woman asked her name, I wrote it down, we exchanged money, and I got a date. September 8th. Then I went and sat to absorb the enormity of the moment.
I kneeled down to pray, and all of the pain came rushing in, I was finally alone enough to feel all the pain and sadness and anger and fear that I had been holding back for months. All of the fear for the future, the relentlessness of the fear and exhaustion. It came out in sobs, I was crying so hard that the tears were hitting the seat in front of me. I’m certain I made a spectacle of myself. If someone walked by they must have thought I was in mourning, and in a way I was. I was mourning my old life, the life with healthy children and worries about mortgages and milestones and whether or not Wendy brushed her teeth. Those normal days were over and I had known it for a long time, but I couldn’t mourn it the way I needed to. That trip, that place, that moment was my release.
I don’t know how long it took me to stop crying, I just let myself cry my eyes out. Finally, I sat there, relieved. I could move on. I could get up and start the next phase of whatever this journey was going to be. First, I was also ready to be a tourist.
I went to something like six museums. I walked in, I saw what I wanted to see, I walked out again. I saw where they kept Marie Antionette before they killed her. I saw the Lady and the Unicorn tapestries. I went to the Musee D’Orsay and walked around my favorite impressionists. I saw Hammurabi’s code at the Louvre and walked along the old ramparts that had been buried for centuries. I ate when I wanted to eat, I drank when I wanted to drink. I walked miles and miles and miles. I bought a few souvenirs for the family.
I did, however, meet people in Paris, I wasn’t totally alone. I arrived on a Thursday, and on Friday night, Michael’s aunt and uncle flew over from England to meet me. I met them at a brasserie on the Ille St. Louis, and we had a drink looking at the back of Notre Dame. And they took care of me as only they know how: they fed me and took me shopping. We walked around the Ille St. Louis, going to a candy shoppe and looking at textiles. They took me to Shakespeare and Co and to the bridge with the locks. They took me out for a lovely dinner and met me the next morning for a visit to the Place du Vogues and more lunch, more dinner, more light conversations. Part of me thinks they made the trip over just to make sure that my sanity was intact. They were clearly worried about me, and in turn, I was incredibly grateful just for their presence, someone who took the time to check on me because, quite frankly, I probably needed it.
Looking back on it, I joke that I was a lobster in Paris. I had been under such pressure that I needed to go somewhere, shed my shell, and start again. I needed to be ready for the next difficult phase of this journey with Wendy, and with Michael, and with our families. Ironically, Irina our au pair didn’t work out. She basically had come to America to find a husband, not look after a sick little girl. When I arrived back in the US, and after we won the battle to have the kidney transplant at Massachusetts General Hospital, Michael and I broke the news to Irina, that we didn’t think this was working out. She, not surprisingly, was unmoved by our decision. She never really liked us that much anyway.
My time away, as well as Michael’s time with his best friend, put us in a place where we could re-examine what was working and what wasn’t. We prepared for the next step. We made ourselves as ready as we possibly could. And we moved forward together.