Living with CMV

Our circular journey...

I feel like we're back where we were a year ago. Right after Elliot's diagnosis, our pediatrician warned us not to google CMV. The range of possibilities would overwhelm us, she felt. After a few months of neurology, audiology, therapy appointments, I ventured to spell out cytomegalovirus in the search line. I scoured bios and stories of children and families living with CMV, and the range was daunting.

Parents subscribing to a list-serv would sign their names with a series of complications (ie, Emmy, cerebral palsy, bilateral deafness, etc.). I gulped thorugh my fear, and managed to reach out to a family in Gonzales with our same neurologist. The mother seemed exhausted, desparate, hopeless. I thought we should meet for shopping? I'm not quite sure what I thought I would have to offer this woman. I sent her an encouraging email, telling her to hang on. After a couple of days, she responded, letting me know that she'd been meaning to remove her posts. That her daughter had died a year prior. That she was sorry if that added to my own struggle with this new diagnosis.

I dropped my subscription to the CMV group that day. My rationale was that I had nothing to offer these folks, and they might not have anything to offer me right now. I knew I had rich supports through my family and friends.

Well, tonight I found myself on the list-serv tonight, and was unable to access information (I'll have to be invited again). When I found myself here last year, my guilt was that my body was not a safe place for Elliot to grow as a fetus, that he was harmed inside me because of me. When I find myself here now, I wonder if my intentional shutting out of this community could've kept me from valuable information that could've saved Elliot's hearing. I am now learning about this drug called glanciclovir that has been shown to reduce progressive hearing loss. Shouldn't I have known about this sooner? We've been riding on the wings of faith...just wait and see. Look to Elliot for what he needs. And now I wonder if this is a form of laziness.

From what I've read tonight, Elliot's chances for bilateral deafness are pretty high. There is a tremendous sense of urgency I'm feeling...do I enroll in signing classes? I feel scared of his world going silent around him. How many songs can I sing to him before it all just goes away? Will his mind remember our voices, the sound of his name? I know I'm getting ahead of myself here, but that's what a night of research will do...The last hearing test we have coming will act as a "predictor" to what his left ear might do. Do we want to know? I know the answer is yes...we're just feeling beat down right now.

Tuesday is the swallow study. I've looked into what negative results might yield. There are a multitude of feeding strategies and therapies that can help Elliot move past possible chronic aspiration...they include thickening of his food, positioning. All things that don't scare us, unlike say, a feeding tube. I'm glad this test comes on the heels of the hearing. Let's just get it over with.

Thanks for all your love and friendship. I've got to say that lunch with Tina and Rene was really healing today. I can't remember the last time I just went out with the girls and talked about the challenges of relationships, parenting, living in this city.