The Future of CMV

As you know, Vera recently lost her daughter, Evie, due to the devastating effects of CMV. I created this 12x12 piece, in memory of her. It includes the scripture, "Peace I leave with you, my peace I give to you. Not as the world gives do I give unto you. Let not your heart be troubled. Neither let it be afraid."

As I worked on this, I thought about how Evie and Keira are both part of a CMV prevention movement that is building momentum as we speak. Last week, the first legislation in the United States regarding CMV was passed. In Utah, the governor signed Utah HB0081which mandated CMV education for pregnant women as well as CMV screening for infants who fail their newborn hearing test. This is a great start. I have heard it said that the science is there, a CMV vaccine is possible within the next decade. However, it will taking the public interest and championing to make this a priority.

They say that only about 13% of people have ever heard of CMV, though as many as 80% have had it. CMV is essentially the common cold, but the effects on a developing fetus are far more harmful that a cold suffered by a healthy child or adult. Many, many babies are born with asymptomatic CMV, which means that he or she is infected but the virus goes undetected. For most of these babies, the outcome won't be as catastrophic as it was for Evie, or perhaps not even for Keira. However, CMV is thought to be one of the leading causes of hearing loss, mental retardation, failure to thrive, and other developmental problems. Meaning, what often happens is that babies are born with CMV, it is undetected and they fight it off on their own, but the unseen damage later manifests in these other ways. 

CMV is preventable. I should have been advised to wash my hands frequently, not to share drinks/food with my children, and not to kiss my kids when they were sick. Minor precautions. Also, if you are pregnant and think you may have contracted CMV, or if your ultrasounds are irregular, you can be tested for CMV during pregnancy. I do not wish for my pregnant friends and relatives to be paranoid about their babies having CMV. Heck, I don't even know that I would have been more careful during pregnancy had I been educated about CMV. However, I would have liked to have had the information available, so please do pass the word if the opportunity arises. 

Great information and public awareness flyers, etc are available here and here. I think it's particularly important to have this information available at OB/GYNs, family practices, daycare centers and nurseries. For what it's worth...

Color Me Rad

It's been a great couple of weeks. The boys had a blast in Florida and brought back souvenirs for everyone.

I was able to do, roughly, all the things I set out to do: 1. Go on a date with Jeff, 2. Spend quality time with Keira, 3. Do something creative/crafty/artistic, and 4. Get caught up at the office. Not too shabby.

We got no real information from Keira's ophthalmology appointment. Our assessment of her vision is about as good as any, and that is that she can't see very well. Because the problem is coming from her brain and not her eyes, glasses probably won't help. We plan to go back to that doctor in 3 months, hoping that with a few more months of development under her belt, we might be able to get a better idea of what's going on.

I made an interesting (to me, anyway) observation of the difference between doctors and therapists that day. We saw the ophthalmologist and pediatrician on the same day, contrasted with the OT and PT the day before and the day after. Seeing the MD's is a little more depressing. Their job is to tell you what's "wrong" and give you a realistic prognosis. And with K, the "problem list" is long. Upon checkout, we most recently received this list in writing:

• Congenital CMV infection
• Neonatal hepatits
• Microcephaly
• Thrombocytopenia
• Conductive hearing loss, bilateral
• Cortical vision impairment
• Cerebral palsy related to congenital CMV
• Estropia

Sheesh. My point is that seeing the therapists is much more encouraging. They see Keira in her home environment. They see how much she has progressed, and their job is to help her be more functional. Thank God for them!

Keira's biggest triumph recently is her ability to self-regulate. She can tolerate so much more and it is helping me to feel more and more "normal." We are much more able to take her in the car, run errands, go to the gym, etc, with her in tow. This makes a world of difference. It always made me feel torn to leave her at home while the rest of us went out....

Which reminds me that our family outing yesterday excluded Keira, but provided a great opportunity for us to talk to the boys about disability. We participated in the Color Run, which is a 5k that supports Special Olympics. On the way over, we talked to the boys about what the Special Olympics is. They are so amazing. They take all of this in stride. It should be an example to all of us. Even when I talked to Ronin recently about how, in the future, if we were to go as a family to Disney World, Keira might have to be in a wheelchair, he thought nothing of it. Anyhow, it was such a fun event. I highly recommend it. And we'll keep enjoying it for showers and showers to come! (Liam's scalp is still green after 3 washes and Ronin sweat bright yellow today.). 

As I said, things are feeling much more settled to me. It seems much less heavy to talk about K in everyday circumstances. But some things are and will always be a little different when it comes to parenting her. For example: 

• I have a tendency to say, "we" instead of "she" and talk about her as if I am the disabled person and not her. A heyday for my future therapist. 
• We recently thought we might be having to look for a new car. Thankfully we don't, but the idea of having to look for something that could accommodate a wheelchair and other gadgets was a little intimidating.
• I was a bit neurotic taking Keira to the doctor regarding a swollen eye the other day. I found myself thinking crazy thoughts like, "what if her infection has resumed and her brain is swelling and the swollen eye is the first sign?!"....It was a mosquito bite.

We're resuming therapy this week after a whole week off. K's going to spend lots of time with her aunt Steph, who's  leaving in August for a year abroad, earning her master's in art history. We are going to miss her. I'm thinking of making a casting of her arms and inventing some "L'eau de Steph" to get K by for the year. 

Keira's Little Brain

Ok. I'm ready. I'm about to post pictures of Keira's MRI. These pictures were taken when she was about 4 weeks old. If you are interested, I would like you to see the damage done by CMV to her brain. I am not going to use technical terms. Partly, you don't need it to see the difference, partly because I'd have to go back to my textbooks to figure it out.

Here is an MRI of a normal brain. The comparison pictures are an adult, but for my purposes here, it's a fair comparison. Sorry I'm not tech-saavy enough to make my own little pointers. Bare with me.

This brain is nice and compact. There is a little fluid/space (the black part) between the brain and the skull, but not much. There are lots of squiggles (that's where most of the info is stored). See the sideways "C" in the middle? See the little bit of black inside the C in the very center? That, I understand, is the ventricles. It's fluid, and there is not a lot of it.

Here is Keira's MRI:

What do you see? There is more black, or fluid between her scull and her brain, particularly toward the back (parietal and occipital lobes). There are very few squiggles. The ventricles are HUGE.

I feel a little sick to my stomach just looking at it again.

Of course we hope and pray that with therapy, therapy, therapy, her brain is rejuvenating itself somewhat. Hopefully there are a couple more wrinkles and a little less fluid. We may never know unless we need an MRI again for some other reason. At this point another MRI would be for curiosity's sake only...what she can do is what she can do, regardless of what the pictures look like.

More than one therapist and/or doctor have commented, when meeting Keira after first reviewing her records, that she is doing much better than they may have expected. We'll take what we can get.

Two more, just to compare:

Milestones by Minutiae

How is Keira, you ask? I know! I've been quite wrapped up in my own process lately. Well, I suppose I've had the freedom to do so because she's doing really well! Within her perimeters, of course. I have become so schooled in infant development lately. And I say that because Keira's milestones are broken down far mare intricately than your basic head up, rolling, sitting, crawling, walking, talking. We are delighted that Keira has recently begun to:

• Tolerate the medium-flow (rather than slow-flow) nipple on her bottles
• Anticipate the pleasure of whats coming when we play a game
• Tolerate things she couldn't before: riding in the car, walking around the mall
• Hold her hands open more, sometimes raking her fingers to feel things
• Move her arms and legs more
• Nap in her bed
• Be buckled into the car seat without 3 distinct startles...one for each click of the buckle
• Be able to move her legs in a preliminary crawling motion when on her belly

The OT remarks weekly that Keira is stronger in terms of her arm strength and holding her head up. She's gotten so heavy that when out and about, I've been carrying her in the "chest pack" rather than the sling. We were wandering the isles of Home Depot the other day (the environment itself was a feat!) and she was lifting her head up off of my chest to look around! Hooray! She's strong enough that she can recline slightly in the high chair and sit with the family through dinner without slumping over and cutting off her own airway. We're even gearing up to start giving her some baby food!

Best of all, Keira is happy. Her laugh is infectious and we love that she is getting to a point where we can include her in more of the family's activities. She's been going on this well for a couple of weeks now, with no major regressions, though we have been expecting it. The biggest change is her ability to tolerate different sensations. Several of our closest friends have noticed and her PT said, "She's definitely at a new neurodevelopmental level." 

Though she's not supposed to say so, one of our therapists is confident that K will eventually walk and talk. That's so exciting to hear, of course, but it frightens me, too. If I dare hope she's capable of more than I have anticipated, I may have my heart broken again (Although, this is inevitable, I guess). More scary is the idea that she will become mobile, but she'll be uncontrollable and need ongoing supervision. Ahh! A day at a time, a day at a time. 

I've been soaking Keira in while the boys have been gone. Learning little things. She likes music. Prefers male voices to female, for sure. Sorry, no Sheryl Crow. I've put her in the chest pack and taken her for a couple of bike rides. We've been hanging out. I've resisted the strange craving I've had to sleep in her room. Typically, the boys and I are all downstairs and the nursery is upstairs. But since the boys are gone, I don't like being so far away. She's delicious. 

I am very eager for her ophthalmology appointment this next week. I am pretty sure she isn't seeing well, particularly out of her left eye, and I am curious whether glasses might draw her out more....I'll keep you posted. 

How to be a Friend to a Friend in Crisis: Preliminary thoughts and an invitation to discuss

Over the past nine months, I’ve been initiated into a whole new way of being. As author Emily Rapp said, I immediately had the sense that I needed to “make my world big” for the sake of my daughter and myself. The befuddling question of what to say or not say, do or not do when someone you know faces a tragedy is something we all face at one time or another. By experiencing the comforts that the community has provided and, in return, making myself available to others in times of need, this is what I have learned:

1.     Let them know how what they are going through affects you.

I have been surprised to find that the most uplifting thing has been simply being made aware that other people are thinking about us, want to know what’s going on, and feel connected to us in some way. Do not underestimate the value in that. A quick note or call saying that you’ve heard what’s happened and are wondering what it’s like and how things are going can go a long way in helping someone feel more secure.

2.     Be specific about how you can help.

In crisis, finding help and delegating people to help satisfy basic needs can be a full time job in itself. Resist the fear of offering something “silly” and make known what you’re actually willing to do. I can’t tell you how many times that’s helped me. For example: watch the kids, pick up my dry cleaning, pay for a week’s groceries, fill my gas tank, clean my toilets, fold my laundry, watch my dog, make some phone calls, let me take a nap, bring me a meal, etc. I’m much more likely to take you up on a specific offer than, for example, ask you to do my laundry if you’ve simply said, “Call me if you need anything.” Also, let me know the level of your availability and/or commitment. For example: Thursday afternoon, every Thursday afternoon, 6-8 am, next weekend, etc.

3.     Be there when the “crisis” is over.

The first few days and weeks are bubbling and exciting, always waiting for new progress and information to arise. However, the adjustment lasts far longer than the initial commotion. Let me know you’re there, even after 3 months, 6 months, when the help seems to be dissipating, but may still be needed.

4.     Don’t err on the side of caution. 

Too many friends have been so afraid to say “the wrong thing” that they say nothing. This, cumulatively, feels lonely. The most heartfelt and thoughtful messages I have received in the past months have been from distant relatives, friends, and acquaintances who are watching from afar.

5.     Ask questions.

I’m dying to talk about what’s happening in my new world. But I worry that you’re sick of hearing about it. When you ask the basic, “How are you?” or “How’s Keira?” I don’t know if you’re just being polite, or if you are interested to know about how I haven’t been sleeping well lately, or that I’m feeling bogged down by the minutiae of K’s therapies. Ask me what it’s like. What I need. How things have changed. How you can be involved.

6.     Tell me about you.

I do not want my world to close in and be narrow. In fact, I fear that. I want to hear what’s happening in your life. Too many friends resist telling me their news because “it’s nothing compared to what you’re going through.” Nah. It’s all relative. I mean that. The only way that I’m going to be annoyed about hearing the details of your most recent drama at work is if you express no interest in my life in return.

7.     Don’t forget the family.

Parents, spouses, and children are our go-to people. They are working overtime to bring us back to homeostasis. Ask how they are. Offer to help them. Realize they are affected, too.

8.     In regards to what to say/send/give, if it’s from your heart, do it.

What matters is that you’re sincere. You can never know what state of mind your friend is going to be in when he/she receives your gift or your words, but the effort itself means so much. For example, a cliché statement such as “blessing in disguise” could feel profoundly beautiful or disgustingly Pollyannaish, depending on the day. But the fact that you stepped into my world in whatever way you could is valuable.

Your turn. Please jump in. Repost this if you think it would be of interest to anyone you know. I know many of you who read my blog have experienced your own tragedies: injury, stroke, death in the family, miscarriage, etc. etc. Some of you may really disagree with my conclusions or you may have things to add. I want to hear it. What has helped you? What has not?

Lonely Without Evie

Evie died in Vera’s arms on Wednesday afternoon. I’d been checking facebook incessantly, anticipating a post from Vera with an update as to how their case conference went. When I saw pictures of Valerie meeting her baby sister for the first and last time, of Evie going outside for the first and last time, I lost it. I felt devastated by the unfairness of it. For Vera to wait and study and anticipate and decorate a nursery and pump milk for three months only for her treatments to ultimately fail. I feel sick.

I wonder why I am so upset by this. Of course it’s horrible to lose your child, but I don’t know Evie or Vera. Not really. I had that fear (this is a theme now), that I hadn’t really dealt with the reality of Keira. Maybe I have this deep pit of despair that I haven’t realized yet. Maybe Evie has made my façade crack open and now I’m falling in. I was thinking about how I’d resisted praying for miracles for Keira, refusing to believe that her illness was a mistake. But now I found myself praying desperately for Evie. Willing her to fight and to live.

I expressed all this to Jeff. “Have I really not dealt with this yet? Do I have all this deep dark stuff that I’m avoiding?” Jeff (wise old sage that he is) asserted that he thinks I’m lonely. He thinks that the idea of Vera and Evie provided so much hope for me. Hope that there really was someone out there who was not so different than me, who would have a child not so different from mine. Someone who would understand. Maybe we would have checked in with each other throughout their lives. Maybe we’dhave eventually met. Maybe we would have established a fabulous group home situation for our girls and they would have been roommates when they were older…

Jeff was right. It’s lonely.

Last night I had this dream.  I was eating at a barbeque with some extended family. An aunt of mine had had a baby and I was playing with her, or trying to, in my lap. The baby was about as big as Keira, and limp as a rag doll. More limp than a rag doll, actually. She was so hard to hold that she kept slipping out of my hands. My aunt offhandedly mentioned that the baby had been found to be infected with “congenital cytomegalovirus” but she didn’t seem to think it mattered much and she wasn’t going to make any decisions, anyway, without her boyfriend, who was out of the picture indefinitely. At this point it was clear, in an impossibility that only exists in dreams, that though I was playing with the baby, she was still in utero. I began asserting that really, they should do something, that CMV was a big deal and that there were treatments to be done to minimize the damage of the disease…nobody was listening. In the dream I felt so upset and frustrated and helpless that I finally decided that I couldn’t stay there any longer. I got up and walked across the lawn toward the house, but I became dizzy and I couldn’t walk straight and I had tunnel vision. I finally collapsed onto the ground at the edge of the yard. Nobody came to help me.

It was then, that Keira woke me, thankfully, to nurse at 5am. She greeted me with a smile, ate peacefully, and went back to sleep. Just like babies do.

Shrinking Mommy

I've decided that it would be a good idea for me to see a therapist for a while. Not because I think I'm not doing as well as can be given my recent circumstances, but primarily to have someone with whom to discuss the existential challenges of this new life.

I've found that getting into therapy is no easy task. Of course there is the economic factor and the reality that most of the good practicing clinicians in the area are 1) people I know or 2) people with whom I have clients in common. So, last week, I jumped for an appointment when a person I respect suggested a name I did not know.

I was excited about the prospect of my first appointment. How hard could this be?  I wasn't looking for analytic probing of my deep, dark, past. I really only needed a good, reflective listener.

I was more nervous that I expected. I really didn't want to run into a client and found myself wearing my sunglasses in the waiting room while I filled out my paperwork. What? Who am I? It's not like I'm going in for a nose job. Once seated in the therapist's office, and through the initial rigmarole, I was asked about why I was there. I surprised myself in that I had a brief moment of terror. I couldn't quite get the words out and thought, "Now is when I'm going to really lose it." I was sure I was going to dissolve into a puddle of tears. But I didn't. I did fine. But then...

In the course of 45 minutes, the therapist suggested all of the following:

• I must be feeling incredibly guilty for infecting my daughter with CMV
• I might need to swaddle my baby to make her feel more comfortable
• This is hard, but it's only going to get worse as Keira becomes more and more different from her peers and other people don't know how to deal with her
• I might need to stay home more, as sensory issues make it really difficult for babies to process information
• My boys may well be feeling neglected and I need to be sure to spend one on one time with them lest they need to be in therapy of their own soon
• Exercise is not self-care enough. I should probably be meditating or sitting by the river.

I really tried to give this person the benefit of the doubt. Really, I did. I tried to redirect, "I understand that. In fact, those are the kinds of things I worry about incessantly. All in all, I'm doing okay there. The reason I'm here is to process the meaning of all of this for who I am and what it means for my life."

Unfortunately, this fell on dead ears.

Welp, I did get my money's worth in reminders of how important it is to let the client lead and to use basic reflective listening techniques. Good grief.

Still looking for a shrink...