Team Keira Elise

The March of Dimes March For Babies was a huge success. Thank you, thank you, thank you to all of you who participated in honor of Keira. We had such a fun time. We are overwhelmed by the love out there for Keira. She does rock, doesn't she?

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. 

Revelation

Two important things happened to me today.

First, as I was sitting across from a client in my office, it dawned on me that I had crossed the cavernous and dreaded divide: I was not only the psychologist guiding the mother of a child with a disability, I was, on a covert level, relating to her as a mom. What I mean is, I am one of them now. You know, the tired, haggard women that I feared I would become? My heart sank briefly when I came upon this thought. I wondered to myself, "Is it really so bad?" and brushed the idea aside.

Then, on my way home, I finished the wonderful book, Far From the Tree, by Andrew Solomon. The final words resonate with me so well:

Subjectivity may be truer than objectivity. Most of us believe that our children are the children we had to have. We could have had no others. They will never seem to us to be happenstance. We love them because they are our destiny. Even when they are flawed, do wrong, hurt us, die; even then, they are part of the rightness by which we measure our own lives. Indeed, they are the rightness by which we measure life itself and they bring us to life as profoundly as we do them. 

Pictures of despair are widely admired. And perfect bleakness is generally thought to reflect the integrity of the author. But when I’ve tried to write about happiness, I’ve had an inverse revelation; which is that you cannot write about it without seeming shallow. Even when one emphasizes the sorrowful or the joyful, one is being honest. Just as one is honest when he says the sky above is blue without getting into the brownness of the earth below. The families I met with mostly emphasized the craning art of looking up. 

Early psychoanalytic models are about accepting life’s problems. Modern therapies focus on resolving them, eliminating them, or redefining them as something other than problems. Does some artiface creep into this brazen triumphalism? People often affect a happiness they do not feel. People whose neurosis have turned to misery are not only miserable but also believe that they have failed. But the vital piece of this inclination toward the light is the unshakable belief that catastrophes properly end in resolution. That tragedies are frequently a phase rather than an end game. This book seeks the nobility buried in Howell’s disparagement. It is predicated on an even more optimistic notion which is that the happy endings of tragedies have a dignity beyond the happy endings of comedies. That they not only transcend the mockishnish to which Howell alludes, but also produce a contentment more cherished than one untempered by suffering.

Sometimes people end up thankful for what they mourned. You cannot achieve this state by seeking tragedy. But you can keep yourself open more to sorrows richness than unmediated despair. Tragedies with happy endings may be sentimental tripe or they may be the true meaning of love. Insofar as I have written a self-help book, it is a how-to manual for receptivity; a description of how to tolerate what cannot be cured and an argument that cures are not always appropriate even when they are feasible. As the jagged Alps are to the romantic sublime, so this curious joy is to the character of these families. Nearly impossible, terrible, and terribly beautiful. 

Thank you, Mr. Solomon, for your years of research and life experience that have led you to these insights. What you have written depicts the model mother I have been looking for: Undoubtedly tired, warn, and sometimes discouraged, but overwhelmingingly blessed by the love that is all around. May I be unapologetic about the former and forever thankful for the latter.

Nearly Normal

What? Don't your babies wear headphones? So, this was a failed attempt at blocking stimuli so that, hopefully, Keira could better tolerate certain situations like church, the rec center, and the school carnival. This was the only one made for babies and the funny thing is...it's too tight on her head (remember: she has a really small head)! So, it squishes her cheeks into a fish face. Cute, but no. 

Things have been really good the past few weeks. I still have lows, but find that, for the most part, if I ride it out rather than fighting it, I usually feel better within a day. More and more I feel like life is almost normal. By normal, I mean that I feel pretty much like things are flowing smoothly, in spite of the fact that I still need lots of help (I may always need lots of help). Normal in that each doctor appointment feels routine and not like the highlight of the week. Normal in that some days, the boys' needs take precedent over Keira's. Normal in that I can have the neighbor girl come over to hang out with Keira while I do an errand because, after all, she's just a baby! Normal in that I can play in the garden for 30 minutes while K lies on a blanket and makes faces at the breeze. Normal in that even though I still think about K pretty much constantly, I'm able to talk about other things, go to coffee with a friend, and even paint my nails. 

We have essentially graduated from the infectious disease specialist. It's kind of bittersweet. I'll miss having a doctor that really knows CMV. However, CMV is no longer the point of all these appointments. The point now is that her development is behind. Also, I think I feel a bond to this particular doctor because he has been with us from the beginning, even in the NICU. It feels a little like leaving home for the first time. 

Keira is doing well. She is developing. Slowly. She rolls a little. She's strengthening her core muscles little by little. She makes quite a few noises. She recovers from being overwhelmed much more easily. She is better at riding in the car. She naps sometimes. And she laughs. Oh boy. It's pretty easy to get her to smile and laugh these days. I tell myself that if all she is ever able to do is smile, then that will be enough. I hope I mean that. 

I felt so good recently that I dared to look at K's MRI again. I was curious to look at it now that the postpartum fog has settled. Oo. Not pretty. I dare to think that maybe, maybe some of that dead space is filling in somewhat. I came really close to posting an image of it for you on here. Maybe one of these times. It's fascinating. 

I realize that there is a certain amount of tough skin required in order to go out and about. I have to pretend it doesn't matter when people say "Congratulations" because they think I have a brand new baby. I have to be willing to talk about it. No, that's not it. I have to be willing to NOT talk about it. When K is with me, I feel like her disability is an elephant in the room, so to speak. So, I find myself feeling most at ease when someone brings the conversation around to that. I found myself feeling so relieved and happy and grateful to a neighbor who recently asked in casual conversation, "What does she do in therapy?" and "Will she have to be in a wheelchair?" So much nicer than a different neighbor who yelled across the lawn, "She's not growing! Why isn't she growing?"

This week: Synergist injection, OT, and 2 PT appointments. We are continuing to work mostly on increasing her strength and teaching her brain how to get these muscles to engage!

They assure me that her growth will continue to be positive. By that I mean that they don't expect her to lose skills once she's gained them and they expect her to meet many milestones, though they don't know when. As she grows, her differences will be more and more obvious. At this point, it's clear that she's not ready for solid food (which could lead to a need for a feeding tube down the road), she can't control her head well, roll smoothly, or crawl. Underneath all that is her basic inability to predictably regulate her own arousal level. As I've said before, when she is too overwhelmed, it prevents her from moving forward in all areas. 

She laughs when Ringo licks her, much to Mom's chagrin. 

Victorious

That's how I feel today. Weeee!

Playing with Ronin at the park while sporting a baby. This (victorious) mom stays in the picture.

I was able to do something good for each member of my family:

"Too much therapy!"

Keira. I endured the stress of the trek and took her to the "woo woo" therapist in Eagle. I don't know what that lady does, really, but Keira was magically doing things all of a sudden that she doesn't do...eating with long, hearty gulps, holding her head up and looking around, gazing straight with both eyes...it was unreal. She says it's part of this neurodevelopmental journey. Because K is short on brain mass, we're essentially retraining her brain to do things that missing parts would be doing. It's still unpredictable when and whether she will engage her eyes, mouth, and torso to their greatest extent, but this should get better over time. When Jeff got home tonight, he said she seemed like a different girl. Bigger smile, new sounds, a gaze that tries to reach a few inches further into the distance than before.

Ronin. I took him to KIA at the Rec Center for the first time. He had no qualms about being dropped off without his mom and no friends to speak of. I picked him up nearly 7 hours later and he was wiped. out. He had climbed the rock wall, played table tennis and air hockey, played basketball, and swam. It was the perfect day for this boy. Not to mention that later he cried after he'd disobeyed me. Cried! Not that I like to make my kids cry or anything but...Man, it's kind of nice to see Ronin be a little more affected, a little more sensitive, and/or a little more concerned that he may have broken a rule or let someone down. And then. Then! He wanted me to comfort him when he felt bad. Oh, melt my heart. He DOES need me, after all.

Liam. I picked him up from the bus stop. Well, sort of. So, when I can't pick him up at school, sometimes I can still save him a half hour on the bus by picking him up at a different bus stop. Ronin and I went to said bus stop but the bus driver did not stop. So we chased the bus down and picked him up a few stops later. In the end, this didn't really save any time, but it was funny and got the message across to him that I was really looking forward to seeing him!

Jeff. Well, I braved the Health and Welfare office. AND I didn't even get mad when Jeff didn't get home til 7:30, which meant that he had missed dinner with the family. And I had even cooked. Sometimes I'm able to realize that his day is just as busy as mine.

And for myself....Well, I didn't beat myself up for not working out. I juggled some finances. I loved on each of my babies. I hung out with a friend. AND I spent some more time reading Alison Slater Tate's blog. I was just introduced to her writing and I think I love her. This and this were particularly wonderful for me in the past two days. Oh oh oh....AND I spent about two hours parenting all three of my waking children BY MY SELF and did just great thank you very much.

Particularly bright-eyed and relaxed in her vibrating bouncy seat today...sat alone long enough for me to finish supper!