April 2007. Orilus was nearing the end of his nearly year-long post-bone marrow transplant recovery. We were "doing school" (as he liked to say) at the dining room table again. And he got talking about Eddie, and about how maybe he could sell cookies (he'd taken up cookie baking as a hobby that year, isolated as he was at home for so many months) to give money to Eddie. Orilus knew I had been out of work all that year, and was putting it all together...that the longer Eddie stayed sick, the longer his mom, Kori, wouldn't be able to work, either, given the frequent trips in and out of Boston for Eddie and the isolation requirements of his immuno-suppressed state. Orilus knew I was going back to work the next month and that Kori wasn't. He also knew that the non-profit that had helped both of our families with bills that year was unable to help Eddie's family any longer. "Mum," he said, "what's Eddie's family going to DO?" I didn't really have an answer for him. "Well, Mum," he said, "we have to do something. If all the people we know gave a little bit of money, maybe Eddie would be okay."
And that's how it started. Orilus decided then and there he wanted to write a letter (some of you may remember it, color-copied and in his own handwriting and mailed to your home) and I was suddenly scrambling to figure out how do you DO this thing, start a bank fund for someone else? I figured it out, gave Orilus some address labels and some envelopes, and he folded, sealed and labeled over 100 requests for donations to the newly-created "Eddie's Fund."
The Fund began by paying the family's monthly car payment, a payment for which the Fund is still entirely responsible each month, and pays directly to the lender. Over the years, the Fund has also helped with other bills on an as-needed basis. Each year, we hope that the Fund will be in its last year--probably no one hopes this as much as Eddie's mom, Kori, who longs to get back to a typical life with a good-paying job--and each year, Eddie continues to struggle in his recovery. Sometimes, the Fund has struggled, too, but always, it's kept on, and kept up with the family's needs. Through fundraisers--a yard sale, an Eat for Eddie night out, an auction, a birthday drive--and through donations (some monthly, others one-time), Eddie's Fund continues to love on Eddie and his family, and to share the hope that this season of their life will pass, and healing will come.
Thursday, August 12, 2010
Wednesday, August 11, 2010
how we met
May 2006. I get on a fairly full elevator in the Main Building of Children's Hospital. Get on at the 6th floor and press the "down" button. Behind me, another woman squeezes inside, and those of us in the elevator silently make room. Silently. Because that's what you do in elevators, right? Keep quiet. Stare straight ahead.
But I caught this woman's eye (at this point, I'd been living in Orilus' isolated room on the isolated bone marrow transplant floor for a few days already and was starved for conversation), and we exchanged smiles. I think she began talking first. "Do you know where I can get my ID badge?" she asked me, pointing at the card I was wearing around my neck. Not only did I know, but I was on my way to that very floor to buy a cup of soup, and would show her myself, and talk with her the entire way. By the time we reached our floor, we had exchanged pleasantries (mostly, comments about how awful it was to stay at a hospital, and vague sympathies for being mothers of the sort who had to stay) and I had decided, instantly, that I liked this woman. Really liked her. But not wanting to pry, I left her at the ID booth with a vague "hope to see you around again," when really what I wanted to say was, "on which floor are you because I could really use someone to talk to right now." Moment passed. Soup was calling, and my son was in the middle of a week and a half of chemotherapy, and I had just a few minutes to grab my food and return to his room and the increase of his side effects.
Later that day, our transplant doctor told me of a new family arriving from Mass General Hospital to the transplant floor. Because Orilus was also a former MGH hematology patient, she thought I might know the family. I didn't. "Well," she said, "I really think you and this boy's mom would benefit from knowing each other." She told me the last name of the family, and asked that I keep an eye out for them, and help the mother and her son to feel welcome.
Later in the afternoon, I was walking through the corridor when I saw the family's name appear on the nameplate next to a patient room. Aha! I thought. They're here! I scrambled back to my room, frantic for friendship, and scribbled what I was sure was a half-neurotic note to a mom I didn't know. One of those "I know you don't know me, but..." letters. I tucked it under the patient's door, since there were all sorts of rules regarding contact between patients and their families in the immuno-suppressed ward that was the bone marrow transplant floor. Satisfied that this mother knew my name and my room number, I hoped I would one day get to meet her.
An hour or so later, there was a knock at the door. When it wasn't followed by a nurse walking on through, I realized I had an unannounced visitor and my heart leapt. Could it be the mom from down the hall, already?! I walked around Orilus' bed and to the door, opened it quietly, and nearly cried...at the sight of the woman from the elevator standing there! She and I both gasped in surprise. "It's you!" we said, as if we were meeting a long-lost friend.
And really, it seemed we were. The transplant doctor had said that she thought we'd both benefit from knowing each other. Kori, Eddie's mom, will tell you that she has been the greatest beneficiary, given that our family began Eddie's Fund three years ago to provide financial support for hers. But I don't agree. Over these years, Kori has provided me with friendship, and more than any other friendship in my life, hers has taught me what it means to "rejoice with those who rejoice, and mourn with those who mourn." Orilus has gone on to great post-transplant recovery success. Eddie continues to struggle. But Kori has unabashedly celebrated with us every milestone, every achievement, every good bit of health news, even as her own son has suffered so much. Why am I motivated to continue to raise money for Eddie's family? Because Kori is actually the greater example of love in our relationship. It's easy for our family to make financial sacrifice for hers, given that we have been able to "move on" from our transplant experience. But for her to have true joy for our family--this is the greater sacrifice, and the more beautiful gift. Jesus said that "greater love has no person than the one who gives his life for his friend." Kori gives her life for me every day, gives it when she calls to hear how Orilus' basketball game went, how his school year is about to begin, how he can't come to the phone because he's over a friend's house. Hers is by far, by far, the greater love. And like I tell her, Eddie's Fund is the only way I know to do something tangible for so loving, and lovely, a friend.
But I caught this woman's eye (at this point, I'd been living in Orilus' isolated room on the isolated bone marrow transplant floor for a few days already and was starved for conversation), and we exchanged smiles. I think she began talking first. "Do you know where I can get my ID badge?" she asked me, pointing at the card I was wearing around my neck. Not only did I know, but I was on my way to that very floor to buy a cup of soup, and would show her myself, and talk with her the entire way. By the time we reached our floor, we had exchanged pleasantries (mostly, comments about how awful it was to stay at a hospital, and vague sympathies for being mothers of the sort who had to stay) and I had decided, instantly, that I liked this woman. Really liked her. But not wanting to pry, I left her at the ID booth with a vague "hope to see you around again," when really what I wanted to say was, "on which floor are you because I could really use someone to talk to right now." Moment passed. Soup was calling, and my son was in the middle of a week and a half of chemotherapy, and I had just a few minutes to grab my food and return to his room and the increase of his side effects.
Later that day, our transplant doctor told me of a new family arriving from Mass General Hospital to the transplant floor. Because Orilus was also a former MGH hematology patient, she thought I might know the family. I didn't. "Well," she said, "I really think you and this boy's mom would benefit from knowing each other." She told me the last name of the family, and asked that I keep an eye out for them, and help the mother and her son to feel welcome.
Later in the afternoon, I was walking through the corridor when I saw the family's name appear on the nameplate next to a patient room. Aha! I thought. They're here! I scrambled back to my room, frantic for friendship, and scribbled what I was sure was a half-neurotic note to a mom I didn't know. One of those "I know you don't know me, but..." letters. I tucked it under the patient's door, since there were all sorts of rules regarding contact between patients and their families in the immuno-suppressed ward that was the bone marrow transplant floor. Satisfied that this mother knew my name and my room number, I hoped I would one day get to meet her.
An hour or so later, there was a knock at the door. When it wasn't followed by a nurse walking on through, I realized I had an unannounced visitor and my heart leapt. Could it be the mom from down the hall, already?! I walked around Orilus' bed and to the door, opened it quietly, and nearly cried...at the sight of the woman from the elevator standing there! She and I both gasped in surprise. "It's you!" we said, as if we were meeting a long-lost friend.
And really, it seemed we were. The transplant doctor had said that she thought we'd both benefit from knowing each other. Kori, Eddie's mom, will tell you that she has been the greatest beneficiary, given that our family began Eddie's Fund three years ago to provide financial support for hers. But I don't agree. Over these years, Kori has provided me with friendship, and more than any other friendship in my life, hers has taught me what it means to "rejoice with those who rejoice, and mourn with those who mourn." Orilus has gone on to great post-transplant recovery success. Eddie continues to struggle. But Kori has unabashedly celebrated with us every milestone, every achievement, every good bit of health news, even as her own son has suffered so much. Why am I motivated to continue to raise money for Eddie's family? Because Kori is actually the greater example of love in our relationship. It's easy for our family to make financial sacrifice for hers, given that we have been able to "move on" from our transplant experience. But for her to have true joy for our family--this is the greater sacrifice, and the more beautiful gift. Jesus said that "greater love has no person than the one who gives his life for his friend." Kori gives her life for me every day, gives it when she calls to hear how Orilus' basketball game went, how his school year is about to begin, how he can't come to the phone because he's over a friend's house. Hers is by far, by far, the greater love. And like I tell her, Eddie's Fund is the only way I know to do something tangible for so loving, and lovely, a friend.
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