Wednesday, August 16, 2006

Blogging the Tumor

Blogging has saved my sanity in the darkest period of my life. I could not talk about it, though the problem was incredibly large and led to lots of staring when we did venture out in public. “My son has a life-threatening tumor.” It took me almost a year to be able to say that phrase. A year in which I flailed around swimming in medical jargon. I used terms like Kasabach Merritt Syndrome, hemangioma, and blood-clotting disorder. Nobody understood what the hell was going on and often they were afraid to ask, so they settled for staring or unfortunate misunderstandings of the problem. I’ll never forget how someone told me very sympathetically how her sister had bad eczema as a child, but she had gotten over it and my son would be fine too.

My son only added to the problem. I only brought him out in public when he was relatively healthy. When he was on massive doses of steroids or chemo, he had to avoid people, because his immune system was compromised. But the effects of steroids linger. Puffed up with steroids to a cherubic ideal of a fat baby, he laughed and smiled, so happy to see people. How could he not be healthy when he had such fat cheeks and a round belly? When people asked me, “How are you doing?”, I often said “Okay” or “Hanging in there.” I didn’t have any energy left to explain, not even to friends.

Finally my little ‘okay bubble’ burst when he had a relapse and his tumor regrew. It’s pretty obvious things are just not okay when your son is in the hospital receiving chemo. His fat belly remained, but his cheeks grew gaunt, his arms and legs whittled down to sticks. He looked the picture of a Third World starving baby shown on tv. The few times he ever went outside, people would stare and if I saw them staring would ask uncomfortably “How old is he?” When I’d reply, they’d look away. I wish then I’d be able to tell them I was not starving my own child. In fact at that time and up until now 600 calories pumps into his stomach every night through his G-tube, a small plug that connects directly to his stomach.

The chemo killed his appetite and destroyed the lining of his stomach. The steroids ruined his digestive system. He relapsed another time. He had infections. More hospital stays. His tumor has finally started shrinking, hopefully for good leaving in its wake lots of collateral damage. I’m still recovering.

But back to blogging. During that second relapse when I was so brokenhearted, one of my friends said “Why don’t you blog about it?” I’d been blogging in a desultory way since 2002, back before it was even called blogging. But not regularly. I didn’t have a blog voice. Now I had something to blog about. I blogged about what was happening with my son. But of course I discovered I had more to say than just a medical journal. I also disclosed more than I would have in person. This medical stuff is so hard to talk about. It makes people uncomfortable. And I have this very English tendency to just shut up when people look uncomfortable.

To say it was therapy both trivializes what I was doing and therapy which can be deep exploration. I’m learning to talk about a deeply taboo topic, infant illness. If you don’t think it’s taboo, ask yourself how many celebrities, except tough football players admit to having sick children. Now I can talk about it out loud. I no longer say “I’m okay” when I’m not. I no longer hide my son’s condition behind medical jargon. I’ve never spent a second feeling ashamed of my son or quailed from his long list of medical conditions. However for a long time I took other people’s reactions as shaming.

Last year I even put a link on dotmoms among the 600+. And I reached the point where I started to get a little traffic. Then spam arrived. I was struggling to feed my son. He was losing weight and vomiting. And I’d log into spam about diets. Now I could have complained to blogger about this outrage, but instead I ran back to more private blogging spheres.

A few folks found me anyway and commented on my posts about feeding tubes, the NICU, tumors, and other special needs stuff.

Then lately several nudges at once brought me back out. This blog. Last week I met Badgermama at a social event unrelated to blogging. Lots of post about blogher. At our photo shoot,I talked to Glennia about how hard she tried to get parents to connect to parents in the hospital and largely failing due to the hospital not getting that parents can't do two months of training. I gave Jill the Reader's Digest Summary of my son, because she asked, and I felt okay. Not comfortable because it's not a comfortable topic, but not worrying that it's not comfortable. I've crossed a new threshold.

I listen when several things happen at once. I start to believe perhaps enduring spam is worth venturing forth into more public cyberspheres again. So here am I. I know how hard it is to have a child with serious medical condition/s. I welcome your comments, but not your spam. I've only gotten this far because other folks broke the silence.

No comments: