Pride and PBS

At Eliot's last appointment (which was over a week ago now) he sat on the bed in the infusion area, watching PBS on a tv that has reception and as usual couldn't look away. Naomi was along for the ride since Aron was out of town and she was sitting on my lap cowering saying, 'No poke Nomi's finger, no poke Nomi's finger, no shot Nomi, no shot Nomi.' She is not a fan of her own clinic and clearly Eliot's clinic reeked of medical realities and she wanted nothing of it.

Eliot's awesome doctor Dr. Burke came in and sat down on the bed and talked directly to Eliot. He sat down and told Eliot he looks great, that his hair is looking great and that he is doing really well. Eliot held his blanket and watched tv. I didn't quite realize that the doctor was trying to talk to Eliot and I kept budding in. And then I quit doing it.

Dr. Burke went on to tell Eliot a few times that he is really proud of him, while Eliot kept watching tv.

I'm tearing up just writing it.

Since when does my son have a doctor who has any reason to be proud of him - like a real, live reason to be proud of him. Not a usual reason a doctor would be proud like 'way to go you got weighed without crying, or you got a little shot without crying or you pooped in the potty (which by the way Eliot has been doing - and wiping too!).

Eliot has a doctor who has many good reasons to be proud of him. And he sat down on the bed and told him that. And if I'm going to paint the whole picture I have to say that I love Eliot's doctors, all of them. I love that his doctors sit down and talk to HIM and tell him beautiful things. And I love that Eliot doesn't even really care that its happening and feels so comfortable (or so it seems) at the clinic that he just hangs out and takes advantage of kiddie cable tv.

And hearing Dr. Burke talk to Eliot like that made another piece of the whole shitty reality hit in. My kid is a freaking cancer patient. A cancer patient. He is a cancer patient. My son take chemo every night when I give it to him. He gets constipated because of other chemo they give him, that I sit and watch the put into his veins. What the hell happened? How in the hell did that happen.

More Blogged by YOU

This is from my good friend Eva.

Hi Sara,

I've been thinking about wanting to call you and so I thought I'd check your eliotandnaomi blog. I hadn't looked at it for a long time and, with tears streaming, I've been reading the stories about marking Eliot's 1-year anniversary of The Cancer. I know it's long past that time, but I feel compelled to share my tiny slice of story with you...

Truth: I know we have the kind of friendship that is a little "esp-ie", and I know you just thought I was calling out of the blue, but Michele Morgan asked me that morning, I think it was Tue, if I'd spoken to you. I said, 'no', and she said something like - you might want to give Sara a call and she wouldn't tell me why. I was annoyed by her vagueness but thought, whatever. I'll just call. So I did and left a message saying I was thinking of you. Then you called back, I think it was Wed night.

Keep in mind, I'm 7 mo pregnant at this point and we've been exchanging all sorts of emails and phone conversations about any number of pregnancy and new baby-oriented issues. You and your sweet McGinley family had sent me a care package with all sorts of great goodies, and really when I saw your name on my caller id, I thought we'd be talking about more baby whatnot. So, I picked up the phone. I was walking out of the guild hall at church and towards my office where I could get a few minutes of quiet to talk to you. I answered the phone, "Hi, Sara!" and you said, "Eva, Eliot has leukemia." That word "leukemia" seemed to stretch out for miles. I stopped walking and told myself to breathe. We didn't speak, we just held onto the silence together for as long as it took me to get to my office and sit down. And amidst tears, I said something like, "geesh Sara, in the future, I don't recommend telling people that way." We sort of laughed, and you shared details, and I just remember hearing an level of exhaustion and tightness in your voice that I have never heard before or since.

(I have to say, I'm bawling my eyes out right now in a way I never have before about this, and it's because now I have a baby, and now I have something to attach all of my love to, and now I can not imagine what it would mean to have JD's life be threatened by a potentially fatal disease, or to have to shepherd him through the months and months of treatment. OMG, how did you not lose your mind over and over and over again?! I think the answer is that you did/do, but that for some odd reason, it keeps coming back to you.)

It's strange. I just wanted to come back and be there for you guys, just clean your house, tend to things that you didn't have time for or care about. But I feel like your and Aron's disembodied friend. In those moments, I realized that you have local friends, you have a very loving family, and that being physically present wasn't going to be 'my thing'. Those first days and weeks, I thought about you all a lot, I stayed glued to your blog, I prayed stumbling and shitty prayers, not really knowing what or how to ask - most of the time, I just felt caught up in a sense of fear and panic. I preached about you and Eliot and Aron and Naomi on Christmas Eve. Your story became Trinity's Christmas Story that year.

I always mean to tell you that a dear monk from the local Episcopal monastery, Brother William, has prayed for you guys unceasingly. Every time. Every time I see him, he asks about Eliot. How is Eliot? Even after it seem clear that Eliot was healthy and turning into a normal 3 yr old. "How is Eliot? I pray for him every day."

In the one day that we got to spend together this past July, I came over to your house with JD and stayed for hours. I think I took two naps with JD upstairs in Eliot's bed. We all got to hang out together. Nan and Isadora came over, Jorma and Gabe stopped by, and I got to watch Eliot and Naomi, these beautiful children, be together in regular time. It was a normal day, I imagine, filled with the usual drama. You opened up an automated bubble blower that your mom sent for Eliot's birthday, I think. It seemed like thousands of bubbles came flying out of that machine. Something felt so GOOD to me about being able to be there to see it all happen in person. To get a taste of that family that I only read about, to breathe life into a friendship that stays intact with the duct tape and glue of email and sporadic phone calls and to pretend for a day that it wasn't the exception, rather the rule, that we get to spend time together in person.

I suppose that's it. And it's so much more than that. Sara, I think you have a gift for making your friends feel really special because you confide in us and share yourself. I'm so grateful to know you and be your friend. I really do hope that some day we get to live closer together and our children might know each other. No matter what, though, we'll just keep on being friends and telling each other our grossest stories and biggest dilemmas.