Politics, Part 2

Approximately one year ago, I wrote my first blog entry, “Politics,” after agreeing to what I thought would be dipping my toes into CMV advocacy. I soon became swept up in a tidal wave of activity and less than three months later, we had actually passed a new law in Idaho.

It’s one of those things. If you’d asked me 5, 10, or 20 years ago whether I had any interest in government, any inclinations toward political advocacy, or any plans to incite change via policy making, I would have answered with a resolute, “no.” And my dear friend who called to ask me to participate in the Idaho CMV Advocacy Project, got me to reluctantly agree by assuring me that for at least a year, my job would just be to meet with various legislators and educate them about CMV and our concerns. That was the least I could do, I thought. But my friend, already knee-deep, was ready to go and found that one of the very first people, if not THE FIRST person she spoke with, not only agreed to sponsor a bill, but found the topic so compelling that he saw no reason for us to wait, as planned until the next political season to try to push the bill through, but to go ahead THIS year! That meant NOW.

Well, how do you say no to that? This was quite possibly a once in a life time opportunity and if someone is willing to sponsor your bill, you don’t turn that down. Ok. What do I need to do? I had no idea. But I put one foot in front of the other. One phone call led to another and another and then a meeting and then a hearing, etc. It was a crash course in local government. What’s a bill? How is it passed? Why do you need a sponsor? Actually, why do you need a law? What’s a hearing?

Before I knew it, I was swept up. On more than one occasion, I’d be “sending out a few emails to legislators” at my kitchen computer and before I knew it I was having to order pizza because the roast I was going to put in an hour ago was still  thawing in the fridge while time flew by unnoticed. Day to day stuff would go undone and the boys knew “Mom’s doing CMV stuff again.” One sponsor turned into two and the three. Countless calls, emails, and in-person meetings with legislators and their staffers, doctors and their assistants, radio, newspaper, and TV journalists, other advocates and CMV moms nationwide.  I wrote, edited, and rewrote flyers, testimonies, and educational materials. I copied materials, stuffed folders, delivered and mailed pamphlets.

Of course, my three companions were simultaneously doing very much the same thing. It was a job in which there was always more work to do. Always more people to call, whether for an initial contact or to follow up or to provide more information. And, in the end, we just did as much as we possibly could before time ran out. It is my understanding that in Idaho, the House and Senate leaders meet only from January through March of each year. So if you want a bill created, read, heard, and/or passed, that is when you need to do it. And after March, there are 9 months for the committees to forget about you, and that’s assuming it’s a year in which the legislators and committees will stay the same because they are not undergoing an election that year.

Throughout this process, we felt that nearly everyone we talked to was extremely receptive to what we had to say. Oftentimes, we would start a conversation with a legislator cold by presenting them with the following graphic, emphasizing that though they surely had heard of HIV, Downs Syndrome, and Spina Bifeda they mostly likely had never heard of CMV. We then went on to talk about our own children and our simple request for help in raising CMV awareness. The response was typically and incredulous, “Why have I never heard of this before?” Females noted that they had known to stay away from fish and cheese and the cat litter box for things less common and/or devastating.

Our goal for a bill, after a lot of research and consultation, was for our state’s health department to give CMV at least the amount of attention that it gives to other public health concerns that affect pregnancy outcomes. That is, we wanted them to put CMV on their website, adding educational information and frequently asked questions. We also wanted to the department to issue informational materials that would be disseminated widely across the state to physicians’ offices, daycare centers, and public health service centers. Here is where we started to brush up against some resistance.

The health department was a little hot and cold. Long story short, they seemed to pay lip service to the importance of CMV education but it was just that. Granted that they are pretty fiscally limited, particularly in Idaho, we came to see that part of the hesitation was because of they blow back that could ensue from doctors. Frankly, and understandably, the medical community doesn’t necessarily want to take orders from the local health department because the health department does not, by and large, house the leading researchers and practitioners in each medical specialty area. Truly. It soon became clear that I was far more educated about CMV than any of the point people that I spoke with at the health department regarding the possibilities of this project. “But why would doctors dissent if they are just handing out educational pamphlets?” you might ask? Well, the arguments we heard were that doctors already feel burdened by how much information they need to get to pregnant women, so they didn’t appreciate having more. They particularly don’t appreciate being told to distribute the information when there’s “nothing you can do about CMV anyway” which speaks to the very necessity of the project in the first place because CMV is actually quite preventable but many doctors don’t realize that.

Confused? Refer to Bekah’s Way, WAY Oversimplified Illustration of Why It’s So Hard to Get CMV Prevention Off the Ground

So, moving up the food chain a bit, many doctors are under-educated about CMV and have come to believe that it is rare, it is not preventable, and there is nothing you can do about it. All three of these things are wrong, but not all of them are things that we (read “wee”) parent advocates can tackle. Many doctors need updated education about how to detect CMV and why that is important. And THAT is where we hit a road block. The powers that be (Centers for Disease Control, Food and Drug Administration, Academy of Pediatrics, American Academy of Obstetricians and Gynecologists, to name a few), the people who actually write the book on the “best practices in medicine” are a little behind (in my humble opinion) when it comes to keeping up with the times in regards to cytomegalovirus. The last I heard, the standard of practice for OB/GYNs upon learning that a fetus is affected with CMV is to advise termination of the fetus. Period. That’s it. No mention of prevention. No mention of treatments that have been proven effective (Cytogam) when used to treat a child in utero. No mention of testing for CMV infection in a pregnant mother. No mention of testing a child for CMV after birth. No mention of treating a CMV infected newborn with antiviral treatments. Clearly this is territory that is much more appropriately broached by the big wigs. The movers and shakers in medical research, industry, pharmaceuticals, and policy making. The current and accurate information needs to be used to inform the standards of care that all doctors are required to follow in the United States. Without it, my pamphlets in doctor’s offices are more likely to be seen by physicians as pesky leaflets of pseudoscience legislated by a couple of angry mothers who don’t understand the whole story. Although, excuse me, I think they are the ones who don’t understand the whole story.  

As mentioned, I believe that physicians in the U.S. are generally under informed about CMV. And, if they are informed, they find little support to do anything differently because of the current published standards. For those few conscientious physicians, dealing with CMV is an uphill battle. There is little guidance about when and how often to test for CMV. The evidence for immunoglobulin treatments is mostly done on foreign soil and so is still considered experimental in the U.S. That means it is extremely unlikely that these very expensive treatments will ever be covered by insurance and could be an enormous liability for the physician.

The more I understood about the nature of this problem, the more discouraged I felt. Convincing the average citizen that CMV is an important thing to know about and prevent is a pretty reasonable thing to do. But once we get past local legislators and work up the chain to professionals who actually know what is at stake with CMV and its treatment, the punier we seem to be. And the more depressed I am to find that there are great big politics, dare I say even corruption and decisions made based on wealth rather than the health and well-being of the citizens and I almost wish I didn’t know what I know.

And with all of that, I just had to step WAY back and remind myself to focus JUST on prevention. It gets too messy otherwise. But as you can see, it’s difficult to talk about prevention without people inevitably wanting to know about treatment if the prevention doesn’t work. It’s so sticky.

But it worked! Or, at least, we achieved our unlikely goal of passing Idaho’s first CMV legislation on the first try. I am proud of that. I do think we did something good. Something great, even. And I was surprised to find that I have some skills that make me fairly good at advocacy including not only a passion for the topic of CMV, but fairly good writing skills, comfort with public speaking, and the ability to sound (mostly) like I know my stuff when asked difficult questions on the spot. But the task and the process grated on me all along. I felt like I was supposed to be a saleswoman. I am not a saleswoman. All along, for reasons described, I wasn’t clear and confident in our ultimate vision. I always disliked, networking, schmoozing, dare I say kissing up to people I didn’t know. In this case often individuals I would never, in a million years have voted for.

There was a lot of psychological dissonance created in me, too, when I was spending so much time and energy trying change the state of CMV when… my daughter won’t be changed. In many ways, some explicit and some less overt, I was preaching that my daughter is not ok. I mean, we had her in the room of the hearing, essentially as a living, breathing example of everyone’s worst nightmare and what we all want to avoid at all costs. When in ALL OTHER SETTINGS of my life, I’m saying, “look at this lovely girl,” “there is so much beauty to be seen here,” “there is so much to learn from her.”  

We were commended over and over for our hard work and told that it was an incredible accomplishment in such a short amount of time. Like I said, people were very receptive to our stories. Keira and the other kids are powerful! But I think the real reason why we had so little resistance is because we are so low on the food chain in terms of making widespread changes happen in the CMV world. There isn’t a whole lot that can be done from the ground up, though that didn’t make it fruitless. But I do think that if we’d been seen as a threat, a lobbyist from the Academy of OB/GYNS or another organization could have squelched our success at hearings pretty easily by telling some other select details. As advocates, we were telling only parts of the story and knowing that it’s so much more complicated than what we are presenting. It’s politics and we were playing the game just like everyone else. But I don’t like the game. I don’t really want to play. I hate second-guessing everyone’s motivations and intentions. It felt…gross.

That said, and for what it’s worth, I met many politicians who I respect very much.  I have a better understanding of what they do for us as a community and I appreciate this work that they do. I believe that they have good hearts and a genuine desire to help people. They know how to play the game and are willing to play the game in order to further the common good. My hat goes off to them because I’m just not built to stomach it.

So what now? The new law was officially effective in July of this year. The health department now has a budget of $15,000 per year to work on this project and as far as I know, they are “actively” developing literature that will be distributed across the state. And as for the Idaho CMV Advocacy Project, we are still here, but probably only one of the moms still has all the passion and drive as she did a year ago. A couple have all but bowed out after the accomplishment of this year. Personally, I still consult with the group and I speak fairly regularly with medical and professional boards and organizations in the area regarding CMV prevention. There is some interest within the group to continue with further legislation and there are several legislators who have become passionate about the cause and are willing to support it. I, however, for the reasons enumerated here, do not feel that I could confidently support much more legislation before some major changes start happening from the other end of the CMV food chain.

***

Whew. It feels good, actually, to have written all that down. I’ve avoided writing about it for a year, afraid that laying it all out there might compromise our goals. Hopefully, we are far enough along now that it won’t really matter. Or at least, if people care enough to read all of this, they will understand my heart and therefore my reservations about working in the political system. In the end, I figure, this is part of my story. And it’s part of Keira’s story. And what good is the story if I don’t expose the dark and twisty (thanks, Grey’s Anatomy) parts?

Baclofen

Baclofen is a medication for treating spasticity that Keira has been taking for about two years now. It was initially prescribed at a very low dose by her physiatrist, who told us it was best for us not to Google it and, rather, ask him if we were worried about the risks. To put it simply, Baclofen has serious risks of overdose and/or withdrawal. Patients also tend to require higher and higher doses when using it long term. We suspected going in that if Baclofen worked for her, she may eventually need a pump.

We saw good effects from the drug pretty much right away. Keira’s muscles were looser and she was more relaxed over all. Initially, she was extra enthusiastic and giggly, as if slightly inebriated, but that part subsided. Therapists noticed that her volitional movement increased and she was less dependent on her primitive reflexes and tone. It became clearer that with the decreased tone also comes less vomiting.

Over the past 2 years, the physiatrist guided us as Keira needed a higher and higher dose of Baclofen more and more often. We eventually added a fifth dose to be given nightly between 2 and 3 a.m. We can bet that without that dose, she'll wake in the morning in a puddle of vomit and will be extra irritable.  

In April of this year, we had already reached the point where the doctor did not want to increase the prescription any further. He schooled us on the ins and outs of the pump and we decided to take the next step, an inpatient “trial” to see if the pump would be a viable option. We left that visit and waited for a phone call to schedule this one-day experiment in the ICU. 

Weeks passed with no phone call and I came to find that Keira’s physiatrist had had a “family emergency” and would be out of the office for several more weeks. Weeks turned to months. Repeatedly, there was a day set for his return and then he would not meet it. There was no other physiatrist or physician competent to handle Baclofen issues in the Boise area, even at the competing hospital.  

Keira's physiatrist was not even available for consultation or in case if emergency. I felt for his poor office staff who had to handle all of the phone calls from parents like me. I was a worried mess come July when Keira was due to have her next hip surgery. I was getting mixed messages with some clinicians advising that the baclofen pump surgery should come first, before the hip surgery so that Keira's high tone was less likely to damage the effects of the hip reconstruction. The hospital was supposedly working on credetialling another physiatrist so there would be some backup, but this was going to take months. We felt we had to do something, so we went ahead with Keira's hip surgery in hopes that the pump surgery would be close behind. The hip surgery went beautifully, but when the cast came off after 6 weeks, Keira's old patterns resumed in the way we feared, which threatens the longevity of those reconstructed hips.

The whole situation with the physiatrist felt so strange. I suspected that the doctor had either ended up in rehab or in jail. Otherwise, how could he suddenly be so completely unavailable? It also felt very tenuous. Here I am in Nampa with my child in this serious drug with no MD to help us any closer than Twin Falls. Nobody. 

Finally, in October, just as it was looking like the backup physiatrist would get credentialed before ours would return, he died. Suddenly and unexpectedly. 

This was heartbreaking. This specialist had really felt like part of our team. He was one of the first specialists that really seemed to get it. I loved him because he didn’t beat around the bush. He wasn’t afraid to call it what it was. He labeled Keira "medically fragile" and stated that we could never be certain whether she would wake up on any given morning. And at the same time, he wanted her to be happy and comfortable. He referred us to palliative care, one of the best connections we've got. He always asked how the kids were and recommended that my husband and I go on “wow” dates. One of our people, one of Keira’s people, was gone. 

I was so disappointed. I couldn’t help but think that he must have committed suicide. Or overdosed on drugs. I have no sound basis for this presumption. It’s just a feeling I get after trying to read between the lines. His obituary was sparse; little more than birth and death dates. I feel so sad for him and his family and his patients. But also, frankly, a little angry at him. You understood. You got it. And you opted out. It’s not fair! I can’t just check out; why can you? I thought we were a team. It's a strange position to be in. As a patient, or, rather, the patient’s mom, there was no outlet or ceremony or designated space for grieving. I didn’t know him personally and therefore I’m not entitled to participate in any funeral or memorial. Yet because he really understood, it felt like we lost a fairly intimate relation. 

For better or worse, the doctor’s death seemed to expedite things at the hospital. There is now a physiatrist in Boise a few days each month and available by phone. This doctor met us later in October for the pump trial. He is a wonderful doctor in his own right. He’s got a pleasant bedside manner, was comfortable with Keira and has first hand, meaning personal, experience with muscle spasticity. 

Keira was incredible on the day of the trial. Typically, kids get sedated for the procedure, but when I pointed out to the doc how little Keira actually wiggles, he agreed to try without sedation. The procedure involved the injection the Baclofen directly into her spine (Like a spinal tap, I’m told) and Keira  didn’t. Even. Cry. My guess is she was enjoying all the attention. There were probably 8-10 clinicians in the room at the time. Lots of observers because, once again, we were in territory that they don’t cover often. 

After the injection, our job was to just sit back and observe the affects. We were in the ICU primarily as a precaution in case the drug suppressed her breathing. It was actually a pretty fun afternoon. There is no better way to describe Keira than “noodly.”  She was absolutely limp and relaxed. Flaccid. Too relaxed, really, but the trial is really a firehose blast to see if the drug will work ultimately.

I was surprised and glad to see how limber Keira’s legs were. This was good news because it means that so far, the spasticity hasn’t actually limited her muscles ability to develop in length. Most astounding to me were Keira’s feet. In the past year it has struck me how more and more her feet are looking twisted and, well, deformed. With the relaxing agent on board, her feet looked utterly normal. 

Fast forward to December. Keira and I are sitting in the back seat of the van as we approach Salt Lake City. There is currently no neurosurgeon in Idaho who does pediatric Baclofen pumps, so Primary Children's Hospital it is!

Today we’ll meet the surgeon and tomorrow Keira will have surgery. She’ll have a hockey-puck sized pump put under her skin below her rib cage. Then a catheter will be threaded up her spinal cord as far as they can get it. The further up the spinal column, the more likely the drug will help her with her neck, shoulders, and arms; not just her legs. The pump works by continuously delivering microdoses of medication directly to where it needs to go, making it much more effective and efficient than oral Baclofen. The side effects are obvious discomfort from the implants, misplacement or slippage of the catheter and unplanned withdrawal or overdose. Also, we cannot adjust the dose ourselves, so we have to be in close contact with the doctor.

If all goes well, we should be able to come home on Monday. We'll keep you posted. As per usual, Keira's wonderful brothers are staying with Jeff's parents and my parents will be travelling to Salt Lake tomorrow to take some shifts on hospital duty.

On Writing

“Rebekah, I think you are a writer.”

I laughed out loud. Partly due to the relief and release of having the validation that my writing and my way of thinking are valuable. Partly a nervous response to the inevitable anxiety and compulsion that would come with increasing my commitment to this hobby.

I’d been talking to my therapist about my tendency to have to think through things to the fullest before I felt free to move on. Whether it be a passionate feeling about something or a scene in a movie or a perplexing social interaction, I so easily get hung up and feel a sense of dis-ease when trying to move forward before I’ve completely processed/made peace with/understood the circumstances and feelings at hand. Is it about being in control? Is it about being artistic/creative/empathic? Do I have a slow processing speed?  I don’t know the answer. But whatever it is, Jeff even agrees, I want to squeeze every last drop of juice from the fruit in my brain. I want to appreciate the full meaning and apply it to the best of my ability. I’d like to think that this, for the most part, is a strength that serves me in positive ways. Perhaps it makes me more open to understanding the experiences of others. Perhaps I more richly appreciate aspects of this life that many don’t. Maybe. But, I know that it is often a hindrance as I struggle to recognize my limits, relax and let go of things that don’t make sense to me.

“Rebekah, I think you are a writer.”

I’ve often mentioned to her that I want to write. But that I don’t. There’s this really difficult push and pull. I really want to write. I feel like so much has happened and that there are so many issues and observations and considerations on my mind that are like caged birds wanting to fly.

There’s this method of therapeutic intervention called narrative therapy. The whole idea is that patients will find comfort and relief in narrating or re-narrating one’s own story. To clarify your history into a somewhat linear story with a beginning, a middle, and an end, with main characters, auxiliary characters, themes, a climax, and a resolution. It’s probable that part of what I want from blogging is to create this type of narrative. But lately, (as in, the past year or so), I feel less and less like I understand how our day to day experiences fit into the story. I don’t quite know what they mean or where they are heading. And so I don’t write. I feel guilty writing very much without being able to tie it all up into a neat and tidy bow at the end. It’s hard to write without being able to scrape together some sort of optimism or gratitude. I really want people to read, but feel like my writing, if I were to do it, would be repetitive and depressing and self-serving.

But I want to put it all out there.

I’ve asked myself, why don’t I just journal? First off, I kept a journal when I was a pre-teen or junior higher. A pink one with a little lock on it. Much later (maybe just a year in those days), I came upon the journal and upon revisiting the pages, I was so disgusted with my words.  I was immature and silly and boring. I was embarrassed. I threw it in the trash. I was pretty sure that my “deepest inner thoughts” were junk and that I was a terrible writer.

Fast forward two plus decades and I sure as hell don’t want to sit alone in my own thoughts. In fact, I do enough of that already, without keeping a journal.  I want to be loved and I want to be understood and I want, somehow, to make meaning out of the trials and tribulations of my little life. For better or worse, I value the immediate feedback that I get from blogging. The sense that others know me a little better, that I’ve made good on my commitment to be vulnerable and transparent, and that I’m not alone in my thoughts and feelings.

And then there’s the Swiss cheese. Since the beginning of my blog, I’ve tried to be as real as possible, though always eliminating a few topics for the sake of privacy, decorum and respect for those near to us. I never talk about how our parents cope with Keira and I don’t talk about finances or legal concerns. In the past year, it seems to me that these matters have blossomed and grown substantially. Increasingly, there are things I need to be especially sensitive and tactful about because of individuals and systems that are involved in our world.

It seems that the holes in this story have gotten so numerous and large that the cheese is no longer even snack worthy. Issues with therapists, clinics, nurses, and doctors are tricky to write about. Though I don’t name names, in this small community it is foreseeable that some readers would be able to identify the persons I mention. My political undertakings have left me extra sensitive about online persona. As a networking exercise, I “friended” many Idaho senators and representatives on Facebook, giving them direct access to my blog, which, in turn, could influence the effectiveness of my CMV-related endeavors. I also fear that sharing my story in a raw and vulnerable way could inadvertently have a negative effect on Jeff’s and my ministry at church.

Should I take the risk and share? Or keep it to myself? Somewhere in between?

Regardless, I fear that my therapist has awoken the beast. I was awake much of the night and awoke early this morning, narrating my life in my head. From experience, I know that this is what happens before a spurt of writing. Before an episode in which I produce a flood of writing with such automaticity and energy that I can’t stop until I’m done. In the end I feel exhausted, satisfied, and a wee bit anxious. I feel like I’ve just birthed an aspect of myself that is right there online for others to consume.

So here I am, starting with a piece about how and why it’s so difficult to write. But she may have created a monster. I’ve let loose and am considering about going back to write about the events of the past year.  I’ve wondered whether I should write more about my own coming of age story, perhaps as part of a larger project, maybe a book, someday. I’ve begun collecting quotes and images and books and articles that speak any sort of new wisdom or intrigue me or that articulate specific thoughts and feelings more astutely than I can myself. I’ve even wondered whether eventually I’ll be contributing writing to the field of psychology. Perhaps someday, for their licensing exams, psychologists will have to memorize Hall’s Stages of Special Needs Parenting. Who knows? Thanks for the vote of confidence, Barbara.

In the meantime, bear with me?

Flower Girl

I have been paralyzed by the idea of blogging for the last couple of months. It's been a very rough year so far; for me, if not for Keira. Sickness after sickness hit us all followed by a fairly traumatic hospitalization for RSV for Keira, which was simultaneous with my work at the Idaho legislature and the passing of Idaho's first CMV law. Throw in a confusing, stressful, and prolonged exchange with a dear old friend, I was ripe for a bout of depression when the bill passed. And, in fact, when I got the news that we had indeed reached our goal after months of tireless effort, I did not celebrate, but burst into tears and yielded to the darkness I felt descending. I fell into a metaphorical pit that I didn't/couldn't climb out of for a couple of months. That's all been hard to speak of and I hope to elucidate it here at some point. 

Fortunately, there was a very happy event this past week, a good time to venture back into blogging. I really do want to continue to keep all of our supporters in the loop and keep a real, raw account of her life and our process as her parents. 

On Saturday, my sister-in-law, Stephanie married her love, Tolga. They felt strongly about including our kids, and particularly Keira, in their wedding. Liam, a "junior groomsman," pushed his sister, the flower girl down the aisle. 

Though happy to be involved, Jeff and I were concerned about the big day for Keira. She has not been herself a lot of the time lately. We've also continued to find that Keira doesn't handle the heat well. She gets hot fast and cools down only very slowly. She doesn't seem to sweat much. Even 20 minutes on our back patio at dinner time in the 90 degree heat would have her retching and vomiting. The forecast for Stephanie's wedding, held at Sawtooth Winery, was 102. Needless to say, we figured we'd call her flower girl debut a success if she managed not to throw up during the ceremony. 

We had lots of good help on the wedding day. Friends and family sat with Keira in one of the few air conditioned rooms indoors at the winery until picture time and then again til the ceremony. She was a little blitzed/dazed, as expected, but it was clear that Keira enjoyed her role in the festivities. 

Grandma Sharyn lovingly sewed Keira's dress, telling her about the process as it unfolded and, finally, trying it in her and helping her finger the lace and tulle. We also did Keira's hair up nice, had her nails done, and put sparkly sandles on her to match the bridesmaids. While getting ready that day, Keira seemed to perk up, to some degree understanding that it was a special day. The best part was when I showed her the flowered garland that was to adorn her wheelchair and put a large bouquet of poppies and roses in her lap. This, it was clear, tickled her. 

Like the little man he's becoming, Liam pushed Keira through the grass and stood with her at the front of the wedding. Keira held her head up and didn't retch. Don't get me wrong, it was a hot day, but the breeze was a blessing and the heat was forgettable during the lovely ceremony. 

Grandma Sharyn and Grandpa Ron promptly took Keira home after the ceremony and she slept like a baby. The following morning, I reminded Keira of the previous day's events and when I asked her if she would like to wear her special dress to Sunday School to show her friends, her smile said it all. 

Congratulations, Aunt Steph and Uncle Tolga! Thank you for loving us and including us in your big day! 

Erica

Last month, I finally went into my family physician to get something to clear up the sinus infection I'd been harboring. While there, I took the opportunity to introduce my doctor to the Idaho CMV Advocacy Project and let her know what we were working on. To my surprise, she told me about another patient she'd had who, not long before I was pregnant with Keira, was pregnant with twins, and had discovered she had CMV. This patient had been referred to a specialist at the time, was able to receive immunoglobulin treatments in Boise, and her twins are now 5 years old and healthy as could be. My doctor offered to call this mother for me, to try to connect us in the name of CMV advocacy, and I accepted.

I barely held it together in the doctor's office. As soon as I was out her door, I began to sob. This rocked my world. Treated? Here? At essentially the same time I was pregnant with Keira?? You won't often hear me complaining about life not being "fair," but that's what I stooped to that day. It wasn't fair.

The patient contacted me before the end of that very week. Turns out we even had numerous friends in common and she had been following my story. She was interested in hearing more about our CMV prevention efforts and wanted to help. In my typical fashion, I laid myself bare for her...

Erica,

How wonderful to hear from you. Thanks for contacting me! What a small world, huh?

I had no idea about you, or your twins, until the doctor told me. I have to admit that as soon as I left her office, I just cried and cried. First, understand, that I am thrilled that your girls are ok and you got the treatment you needed. Stupefied, really. I've come to believe that my doctor was somewhat negligent and he SHOULD have known something was wrong with Keira. I think something I've told myself, though, is that even if he HAD figured out that I had CMV when I was pregnant, the chances, at that time, of accessing any sort of effective treatment from Nampa, Idaho would have been slim to none. Well, your story blows that assumption out of the water for me and brings on another layer of grieving, I guess. You essentially were pregnant at the same time and in the same place I was and you were able to save your baby. Makes me sad.

I'm sorry to dump that on you. If you've read my blog at all (THANK YOU, if you have), you know I like to be an open book. I hope to meet and bring you in on this CMV awareness stuff, if you are willing. But I guess I needed you to know that I might possibly inadvertently have difficult feelings around you and your family, at least for a little while. I hope I'm not totally oversharing.

So, I was recently (within the last few months) asked to join two other women in forming the Idaho CMV Advocacy Project. There is another CMV mom, who's daughter is 11 and functions much like Keira, who lives in Sandpoint. The 3rd is a woman who is an audiology graduate student who was very involved in rolling out the CMV legislation when it began in Utah.

Our goal is to create legislation that will allow for increased education and awareness of CMV. We want to target doctors and pregnant women. Because CMV is more prevalent than even Downs Syndrome, we think that people should know as much about it so that they can take steps to prevent it. Reception has been surprisingly good from Idaho legislators and we are moving forward to a bill this year!

We actually have a print hearing on Tuesday and hopefully will have 2 other hearings follow soon after. I'm emailing/calling/meeting with legislators on a daily basis now.

I would love for you to be involved as much as you would like. Off the bat, these are the types of things you could do: Write a letter of testimony; attend one or more of our hearings to show support; testify at one or more of our hearings; email legislators; call legislators; visit legislators; help us with putting together and/or delivering informational packets, printing documents, etc; and other odd jobs (for example, right now I really need to put together some thank you gifts for our sponsors and I need to look into having some swag printed with our logo on it, etc.)

Whew. If you've made it through all of this and are still interested, I would love to meet with you. This Saturday, before or after Upward, might be a good time to have coffee. What to you think?

Take care,

Rebekah

Rebekah, 

I so appreciate your honesty. I can only imagine the wave of emotions you experienced learning about my situation, and I appreciate you being willing to get to know me and my story. To be totally honest, I really struggle with guilt about our girls having a positive outcome. I have so many conflicting emotions surrounding our whole CMV experience that it's difficult to even articulate.  

I would love to get together for coffee this Saturday. And although the thought of speaking in front of legislature gives me all kind of panicky feelings, I am thrilled at the prospect of being involved. I would love to help wherever you need it most.  

Erica 

Though another friend warned me that this might be a terrible idea, Erica and I met for coffee early that Saturday morning. She shared with me her whole story, which is much more complicated, of course, than our doctor had let on.

Erica was falsely diagnosed with mono while pregnant and only through further prodding did she receive testing for CMV. As is commonly the case, Erica was advised to terminate her pregnancies. As this did not sit well with her, Erica did her own research (digging) and, finding that there had been overwhelmingly positive effects from immunoglobulin treatments done in similar cases in Europe, she was able to talk her doctor into consulting with a physician in France and, ultimately was able to acquire the treatments here in Boise.

It was NOT an easy road for her. In fact, it was traumatic in many ways. In the end, Erica had two healthy CMV-free babies, but it was hard won and I do not, for a second, blame her for hunkering down with her family when they were all home from the hospital and mentioning CMV only once in a while over the next few years.

I was relieved and maybe even happy to hear Erica's full story. What kind of monster does that make me? I could only be her friend if I felt she'd had enough hardship and paid her dues? I don't want that to be true of me. It wasn't that I was happy she'd struggle, though, I realized. It was that with her story, my world still made sense. My story, my understanding of how Keira came to be could still be true. It wasn't that there was this whole other reality where CMV was easily diagnosed and cared for. Not at all. And we could relate to each other in this. I am so thankful.

Not only did Erica meet me for coffee, she testified during our print hearing just a few days later. Her unique story and experiences have added important depth and perspective to our approach. Erica dove in the deep end and has been a wonderful asset to our efforts. She has helped keep me level-headed, which can be a feat. She's built up my confidence in advance of our big meetings and calmed my anxiety after the fact. 

I've met her beautiful family, with 3 girls in all, and am nothing but thrilled for the life and the health they have. We've been friends for a whole month now! I'm so glad to know you, Erica!

CMV Call to Action

Many of you have asked me what you can do to help. Now's your chance! If you are reading this blog, or if you are a friend or acquaintance of mine, you know enough about CMV to write a letter for me.

We have a print hearing coming up soon to pass the first CMV bill in Idaho. We want to have as many letters as possible at the hearing to provide to legislators.

It doesn't need to be fancy. It doesn't need to be long. Just write a statement saying how you have been affected by CMV. Or how you have seen ME be affected by CMV. Tell them why you think it is important that there be more public awareness and education about CMV in the state of Idaho.

Then email your letter to Idaho CMV Advocacy Project at idahocmv@gmail.com OR to me at bekahelise@msn.com.

This means so much to my colleague and I.

If you are still reading...

• Most of you had never heard of CMV until you heard about it from me.  
• WRITE ABOUT THAT!
• Surely you've heard about Downs Syndrome, which affects 4000 U.S. children per year. Surely you've heard about HIV, which affects 100 U.S. children per year. You may have even heard of Toxoplasmosis (you know, the stay-away-from-the-litter-box-while-you're-pregnant one?) which affects up to 4,000 U.S. babies per year. CMV AFFECTS 5500 U.S. BABIES PER YEAR!! Prenatal care in Europe includes CMV prevention. Why not here?

• Some of you have told me that you asked your doctor about CMV and they said it's not that common
• WRITE ABOUT THAT! 
• 1 in 150 babies are born with CMV. Of those, 1 in 5 have long-term disabilities because of it.  
• Some of you have told me that your doctor said, "If you were infected, there's nothing you could do about it anyway." 
• WRITE ABOUT THAT!
• There are options for antiviral treatment and immune globulin injections for some women. More research is being done as we speak. 
• Some of you have told me that your doctor advised you not to be around me or Keira for the duration of your pregnancy "to be safe." 
• WRITE ABOUT THAT!
• According to the Centers for Disease Control and Prevention (CDC), infected children should not be excluded from school or other settings. Children born with CMV pose no threat to their peers and are NO MORE OF A THREAT TO THOSE AT RISK FOR CMV INFECTION (ie. pregnant women) THAN WOULD ANY OTHER PERSON!!
• The information that is currently available to women in Idaho is NOT accurately or adequately addressing the PREVELENCE, the SEVERITY, or the PREVENTABILITY of CMV. 
• WRITE ABOUT THAT!
• Perhaps most importantly, CMV is totally preventable....IF we know what to do. 
• WRITE ABOUT THAT
• CMV is most readily transmitted from wet saliva to wet saliva. Pregnant women most often get CMV from the toddlers they parent/work with. The best way to avoid CMV is to avoid sharing food, drinks, and utensils with others. Avoid wet kisses from toddlers. Practice good hand washing. 

• PLEASE don't hesitate to cut and paste any of this information. 

What are we asking for? We're starting simple. This year, we are hoping to pass a bill that will enable Health and Welfare to run an educational program and provide awareness materials to physicians and pregnant women all over the state.

Here is our purpose statement:

The purpose of the CMV bill will ensure that the women of Idaho and their doctors have access to the most accurate and up-to-date information available regarding cytomegalovirus prevention, infection, and treatment. Appropriate dissemination of this information will foreseeably prevent the infection of numerous babies in utero, thereby saving the state of Idaho millions of dollars in the care and treatment of various disabilities that are associated with congenital cytomegalovirus infection. 

Where is the sun?

This has been the week from hell.

It’s been an extremely unusual winter here in southern Idaho. Usually, we get a few snowfalls per season, 1-4 inches each, and each tends to melt away within a few days. If the kids are lucky, they get one snow day.

This year, the snow started to fall well before Christmas and it has been white ever since. There have been numerous storms and the temperature has not risen to melt it away in between. Nampa simply is not equipped to remove that amount of snow so widely and frequently, so even when our main roads have been clear, many people are still stuck in their driveways or neighborhoods because of the snow and ice there. Ice melt hasn’t been available in stores for weeks. I’ve lost count of how many snow days. 9? So, the kids had Christmas break, then as soon as they were “back” at school, they only had 2 days of school in 2 weeks.

Frankly, I liked this forced slow down. Sure, it’s annoying that our wheelchair van gets stuck so easily (the low rider gets high centered pretty easily), but it’s been an unexpected blessing to have to rely on neighbors and kind strangers. And it’s annoying that the first place snow seems to get piled is in the wheelchair accessible spots, but with this much snow, the parking lots don’t tend to be full anyhow. I liked the excuse to not have to get dressed and get out. I’ve had excuses to call off of Keira’s doctors and therapies that would not jeopardize our relationship with those caregivers. It’s kind of felt like camping. We had nowhere to be and had to make the most of what was right in front of us. We had to dig through the pantry and to the bottom of the freezer and make do with what we had on hand, which tends to be a lot if we think about it.

It tends to be a lot if we think about it…. A lot of friends and family were sick and tired of being cooped up long before I was. They were stir crazy and angry that they couldn’t get on with life as planned. Even last week, during Sunday school, I pointed out how this weather has been an opportunity that reminds us how little control we really have over our lives. While warm and safe (most of us) in our homes, we are being reminded that our lives are small and can be displaced by something as insignificant (or so we usually think) as the weather.

How righteous of me.

The message in Sunday school that day was about a concept called “holy fear.” The leader encouraged us each to think of fears we have, big and small. She led us through some scripture regarding Old Testament kings who did and did not lean on God in times of fear. My friend’s point, I think, was to show us that the times when we feel worried or fearful are precisely the times where we have opportunity to look beyond ourselves for help. The kings who did it wrong were the ones who thought, “I’ve always been able to make it work before, so I’ll do it myself.” She reminded us that our job as believers is to walk right up to the precipice of our fear. We are not to stay in bed and wait for someone else to do all the hard work. We are to march right into the face of battle and there, at in the middle of hardest part, is where he will ALWAYS meet us.

I had 3 main goals for the week. First, I was going to go to the doctor on Monday. After taking antibiotics for a week to help a supposed sinus infection that I’d had since Christmas, I wasn’t feeling any better and needed to get checked out.

Second, I was going to spend all day Wednesday and Thursday at the statehouse with my colleague from the Idaho CMV Advocacy Project. We’d spent a Saturday at the CMV Advocacy Academy, worked together to write and put together dozens of packets of materials, and had appointments to meet with numerous legislators over those two days to talk about writing a bill to provide CMV education in Idaho. Dare I say, I was actually starting to have fun with this process?

Third, I was going to make some progress with figuring out my debt with Social Security. A while back, Keira suddenly stopped getting social security disability checks and we were told we were overpaid by $13,000 and needed to pay it back. That’s about 18 months’ worth of payments that they had overpaid us, even though we had been updating them regularly with our income information. Of course, the 10 pages of documentation that accompanied the bill “explained” the debt, but if any of you have ever seen such a statement you probably will agree when I say it may as well be written in Greek. Or Martian. After calling the Social Security office, they told me that the file could not be opened to answer my questions because the file had been “terminated.” Meaning, I could not find out about why it had been terminated because it had been terminated. Fast forward a couple of months, I have gone down several rabbit trails looking for help and had finally come upon a disability rights group who seemed EAGER to assist. After a phone interview, they said they would call within a week and specify how, exactly they would be able to help.

Sunday night, Ronin was hit with a violent stomach bug. He vomited most of the night. When he slept, I stayed awake, listening to him breath, because I knew he was going to vomit again before he did and I cleaning up bathroom is WAY easier than cleaning up the bed/bedroom/hallway. Monday I took Ronin to the doctor because he was still feeling incredibly nauseous but now was writhing in pain.  After multiple tests, they decided NOT to hospitalize him, and sent him home to rest.

Tuesday was spent nursing Ronin back to health. I quarantined Keira in her room with her caregiver, determined to keep Keira from catching this bug. It could kill her. I get a nap here and there. And I spend too much time reading the news and looking at Facebook. I never cared about politics. I figured that whomever was able to make it into such an office as president of the United States, whether I agreed with his or her thinking or not, we’d all be ok. I resent that I care about politics now. I don’t know that everything will be ok. He might be a “good” businessman, but “the least of these” are not good business.” My daughter is not good business. The poor, the weak, the disenfranchised, the sick, the minorities, the abused…they are not good business.

Tuesday afternoon I get a call from the boys’ school. Liam is vomiting. I spend Tuesday night with Liam as he is awfully sick, unable to sleep. “I’m here, at the precipice,” I thought.

Wednesday morning Ro still feels weak and yucky and Liam’s stomach is just starting to settle. To leave them would mean that my mom would have to care for all 3 kids, making it more likely that the germs would get to Keira. Jeff, by no means, could take the day off. His Wednesday responsibilities mean that if he took the day off, 4 other people would have to as well.

I didn’t go to the statehouse. Instead, I spent all day doing laundry and disinfecting the house. Surely, I thought, everyone will be better by tomorrow and I can make the Thursday appointments at the capital. Wrong. Liam was throwing up again in the night. I couldn’t leave. “I’m at the precipice,” I thought. My colleague kept me in the loop. She did an amazing job. She got an excellent response from legislators and a bill is already underway. I just cried as she told me the good news. Not so much because of the good news. More so because I wanted to be there, damn it. At least, I’ll go and meet with my colleague on Friday morning before she leaves town. I’ll get the full update, make a plan for what I need to do to continue forward progress, and potentially meet some of the people who have offered to sponsor our bill.

On Thursday morning, Keira’s therapist calls. She’s vomiting.  Dehydration is a major risk for this kiddo. We huddle over her all day, releasing air through the G-tube trying to prevent further vomit, administering pediatlyte by the milliliter. Twice I consider taking to the ER.  First, because she vomits dark brown, which is highly unlike the color of the clear liquids she’s been getting. Jeff disagrees because she’s acting alright. Second, because she’s crying and sweating, out of sorts. Jeff disagrees because at that point she’s tolerating fluids. We know from experience that if we take her in she would definitely get admitted. We keep her home. She gets through. I don’t make it to the capital on Friday.

Friday morning I open Thursday’s mail. One week later, I’ve received a letter from the disability rights group. I’d expected a call, but it’s a thick packet. This is promising. I read, “Unfortunately, the issue you called about did not fall within this year’s case acceptance priority.”

That’s it. I’m so pissed off at this point, I don’t know what to do with myself. I go for a drive. Why am I so upset? I ask myself? Why is this so hard? It went so well at the statehouse. Why do I feel so crushed? The answer? Because I am out of control. I want to think that I matter. That most things are predictable and reasonable. This just sucks.

And I realize I’m eating my own words.

And then it’s Friday night and Jeff is finally home and I sleep for nearly 18 hours.

And I realize that God was there. Is here. Nobody was hospitalized. We are all resuming health. The CMV bill is making progress. And the social security debacle isn’t finished yet. But it’s not what I wanted.

Give me a just a few more hours to pout.

Then my goals for the week will be 1) Go to the doctor to check out this darned sinus infection, 2) proceed with what needs to be done to get the CMV bill through and 3) make some more phone calls to try to find a responsive person at the social security administration.