Dear Vera,

I will understand if you don’t want to be friends. But, you’ve been on my mind a lot lately. Of course there’s the fact that I’m rooting for Evie on your behalf, but it’s more than that. I feel really drawn to you as a fellow mom of a baby with CMV. I keep wondering why, exactly, that is.

When I found out that Keira had CMV, I did what you did, immediately delving into the literature and websites devoted to CMV. I also put my name on several lists. Lists of parents of kids with CMV. I read almost every story that was posted by families on the Stop CMV site. I thought I was going to want friendship, camaraderie, and support from others in my situation. It wasn’t long before I figured out that I wasn’t looking for friends. I was looking for a story that started out just like Keira’s so that I could read the ending. So I could know what was going to happen. When I realized that there was no identical story to be found, I stopped looking.

One night, I did some instant messaging with Janelle Greenlee, the mom of 9-year-old twins with CMV and founder of the Stop CMV network. It was fun and refreshing and informative to talk with her and she gave me her phone number. I never called her.

To my dismay, when I think about meeting or associating with other “CMV moms,” I have a pretty negative gut reaction. My [probably uninformed and unfair] assumption about these moms has been that they are prematurely old, tired, bitter, hard-edged, resentful, and depressed. I don’t want to be that. I want to find another way. My own way.

As I’ve gone along, I’ve seen another side of “them.” Some have accepted their lot, are moving forward, and have plenty to say about it. Their sureness is off-putting to me, even as I feel a confidence building in myself about being a CMV mom. What is that about, I ask myself?

I find that I don’t want to meet the parents of kids who are doing “great,” for with them I may grow increasingly anxious about what Keira isn’t doing. Likewise, I don’t want to meet the parents of kids who are doing “worse” because I don’t want to see what could happen to K. I want to remain as optimistic as possible. I don’t want to know what you know…yet, I think to myself. Don’t short-circuit this process for me.

For one, it seems like so profound and rich a process that I want to savor it myself, however masochistic that may or may not be. Like watching a gripping movie with someone who’s already seen it, I don’t want to be told what happens. Although sometimes it’s lonely and scary here in my shoes, I don’t know how I could handle knowing another family facing something like this. Or maybe it’s just that I’m doing pretty well taking things one day at a time. I’ve got this precarious juggle nearly mastered, so don’t knock me off balance by throwing in another ball (And the ball, I’ve found can be any tidbit of information. Like the cost of a high-tech wheelchair. Or the news that some 2-year-old with CMV had to have 3 root canals because the CMV rotted his teeth.) Even if it means I have to stay in this lonely place alone.

And maybe part of why I don’t want to associate with them is that I’m in denial over being one of “them.” Who ever wants to be the parent of a disabled child? But, you know, I am one of “them.” So, now I am “there.” But, for me, being “there” turns out to be not so bad because “there” is still my “here,” and we’re doing okay. Maybe being there is what it takes to realize that there and here are not such distant places. Maybe that’s what those people mean when they say we are actually lucky or blessed. But that brings me full circle, doesn’t it? And I’m still hesitant to be in the CMV Mom Club.

So, then, it’s strange to me that I’m so drawn to you and Evie. Well, I’m sorry to say that it’s crossed my mind that the reason you feel okay to me is because I think I have some sort of advantage over you. Like I have some illusion of control because I’m 7 months in and you’re just 7 weeks in. As if you can’t tell me anything I don’t already know and I can be your guide. I apologize for that. I know that’s bullshit, really.

All that said, I’d love to remark on some of the things you’ve shared on your blog. For what its worth.

Regarding thinking vs. feeling: Try not to worry. You love that little fighter more than you know. I had similar feelings while K was in the NICU and after. Sometimes I still feel like her service coordinator more than her mommy. I am sure that multiple people in my life have shed more tears over her than I have.

BUT. What is it to be the parent of an infant? Your whole job is to ascertain her needs and get them met. So at this stage what else can you do but learn and study? I would assume we have this in common with other parents of disabled kids. This IS your love. It’s inevitable and necessary, but not the love you expected. Reflecting on that for myself, I guess that’s what I saw in “them” (the parents of disabled kids that I didn’t want to be) and that’s not the love I expected or wanted. It’s so different from the early bonding moments we had with our other children. But love is love nonetheless and when you’re in it, you want it, no matter what it does to you (Again, “there” is not so far from “here”).

I am also aware that thinking does feel safer than feeling. Sometimes I’m afraid that I still haven’t really felt what’s going on and that someday I might fall apart. After all, I’ve been prone to depression in the past and it sure seems that situations with far less gravity have sent me into a tailspin. But then again, maybe I’ll be just fine. Maybe mommyhood brings to us a level of resiliency and drive that we’d otherwise never have known. Undoubtedly it’s a process and some days will be better than others. It’s hard, as one of your friends said, living in the gray area. Not much is for sure. Everything depends. Sliding scales. Spectrums. Relativity. Ugh.

There’s just one thing I know. We’re going to be okay.

Sincerely,

Bekah

Vera's second daughter, Evie, was born with CMV and remains in a NICU in Colorado. Vera blogs at feetuponground.blogspot.com. We connected after she listened to my interview on Parenting Reimagined, which was later posted on the Stop CMV website.