The Boston Train Story

December, 2013: I have this book that I’ve been writing that I’ll probably never publish. So as we wrap this week of Crohn’s & Colitis awareness, I wanted to share one of the stories. Long, yes, but…

The more difficult years of Steven having Crohn’s disease are here, or not too far ahead of us. Girls and dating. Skins vs. shirts. This writing is from 2010, when I didn’t have to think about that as a “today” issue because I was busy living in the hour-to-hour immediate present. But we are here now. And today is that day I didn’t have to think about then.

He sleeps on my shoulder as I try to type this. The sun is already bright. Walking to Penn Station at 5:15 in the morning is quite an experience. It’s hard to explain to a child all the reasons for the sadness and the lost dreams manifested in humans sleeping on the street. We are on our way to Boston and I’m not sure that our feet have touched the ground as we headed toward the train. We are excited, I think buoyant might best describe it. This is a special day we worked for. “We,” I say. I was the bystander. Steven endured months and months of pure agony, and accepted the unstoppable degradation of his body with profound courage and fortitude. He did the work, both physical beyond what I could describe, and deeply emotional and cerebral. I was his “wing-mom” and did not leave his side, literally, but for 30 minutes for the duration of this entire life–changing experience. I stayed physically connected to him for both our sakes, but it was his fight to step up to. And here we are, northbound, in triumph, toward another of Steven’s big goals. He spoke often about wanting to go back to Fenway Park for The Dana Farber Jimmy Fund Fantasy Day. After going last year, and being moved by the struggle and courage of the kids in attendance suffering with cancer, he said he wanted to go back “every year for the rest of my life to support this cause.” Last year, at age nine and perfectly healthy, “every year” for his forever seemed like a long time. It doesn’t any more. Time is too abstract. So today is a milestone day and we on our way. Some dreams do come true.

The difficult street sights before us led to the conversation about making wise choices, getting a good education, finding the right girlfriend/wife, working hard. All of the things that in the end lead to success. Ultimately, being happy is to me success, and making wise choices paves the way.

“Mom, my counselors at Camp are so cool. We were talking about girls the other day and they told us to find a smart girl to date. She has to be smart. And, of course you want her to be really nice, the counselor told us,” said Steven giddily. “But, Who would want to date a mean girl?” (I didn’t get into the particulars of that query) “I want a girl who is funny. She has to have a good sense of humor, ya really need that in life.” (He would know.) “I want my girlfriend to have faith and believe in God too. And we all agreed that we want her to be really, really pretty.” He giggled a priceless, embarrassed giggle that comes with talking about pretty girls with your mom. “Ha! I can’t even pick out the right shirt the morning, how am I going to find the right girl?” I was a couple of roller-suitcase strides ahead before I realized that he had slowed his pace nearly to a halt. “You know Mommy, (I melted at the ‘mommy’) I’m just thinking that it will actually probably (loved that) be easiest for me, out of all the boys, to find the most special girl. If a girl chooses me, well, you know, with this bag on my side, and with a disease, she surely will be the most special girl of all.”

He seemed quite pleased with his revelation and had no idea of the profound wisdom of his thoughts. His well–timed, second–long pauses while he searched for words were as out of an A-list director’s cut of a favorite movie. Simple perfection. Genuine. I hid my sadness, my fear. My tears I choked back quickly, so as not to ruin his moment of triumph that was displayed quite matter-of-factly. But to realize at 10 years old that no ordinary girl would be able to be his girl left thoughts bouncing around my head. I found myself praying for this girl of the future, while offering grunts and uh-huh’s to whatever he was saying now. He didn’t elaborate about this revelation or wallow in its challenge. He bounced to the next topic like a typical little kid with few cares to concern him. Instead of listening, I was mentally lingering on that profound moment of a small boy telling of his hopes and dreams and revealing a vulnerability so pure it changed me.

Worn. Weary. Elated. Sad beyond belief. I’m ready to close my eyes and be fortified by sleep and the escape it offers. Soon we’ll be in Boston cocooned by the love and laughter of dear friends. And again,  buoyed by the hope of those who understand hope’s life-sustaining power, and the exhaustion of using it like oxygen.

  1 comment for “The Boston Train Story

  1. Lucianna R
    July 14, 2014 at 2:47 am

    Beautifully written. I hope u do publish a book about one smart insightful little man with so much courage, yet so innocent. Shows the amazing person u are raising are coming from his amazing parent.

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