Thursday, August 10, 2017

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?

Tuesday, July 18, 2017

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! 

Wednesday, March 8, 2017


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...

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,



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.  


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!

Saturday, January 28, 2017

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 OR to me at

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.  
    • 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
    • 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." 
    • 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." 
    • 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. 
  • Perhaps most importantly, CMV is totally preventable....IF we know what to do. 
    • 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. 

Tuesday, December 13, 2016

Falling Apart

If you've followed my blog for long, you know that after Keira was born, I fairly quickly accepted the idea of her diagnosis and, as a result, our new life. However, for a long time, I lived on edge, believing, anticipating, that "one of these days," the truth of it all would really hit me and I would fall apart.

I've "fallen apart" a few times in my life. By that I mean the emotional, physical, spiritual, and practical result of feeling utterly devastated, disappointed, and/or depressed. Falling apart is feeling so disrupted, so distraught, that it's difficult to carry on with life as you had before.

Eventually, with a lot of assurance from you, friends and family, I came to believe that perhaps I would not decompensate after all. Perhaps I was doing alright. Perhaps falling apart wasn't inevitable.

I wanted to confess that it happened. In the past month or so, I did fall apart. The funny thing is, it had nothing to do with Keira. Without sharing details, I will tell you that a hurtful memory from my past made itself relevant again through a well-meaning friend. And BAM! Some hurt that had lain dormant for many years hit me like a ton of bricks.

I cried. I sobbed. A lot.  I couldn't eat. I had bad dreams. I went to work and couldn't work. I couldn't concentrate. I felt utterly miserable. What happened is that these memories came up and awakened feelings in me that I hate. I felt ineffective, out of control, humiliated, and needy. Once I got over the embarrassment of being so consumed by these feelings after so many years, I began to see the picture more clearly.

Years ago, I had neatly swept these ugly feelings under the rug, associating them not with being human and being part of myself, but filing them away under that time of my life. Encountering memories from this time of my life not only pulled back the rug, it shook all of its filthy dirt out all over my living room.

I'm able to see now that my falling apart has little to do with the circumstance of my past, but rather the confrontation with parts of myself that I abhor. My true work in the past few weeks has been to begin addressing these feelings, recognizing them to be utterly human and acceptable, and incorporating them in to my life as opposed to sweeping them back under the rug.

Why do I mention this on Keira's blog? Because I believe it's vital to my understanding of who I am, which, in turn, will affect my outlook as a parent. Becoming a more whole person doesn't always happen in the ways we expect. We all have big blind spots. And they effect everything. If I'm able to accept that I'm needy, dependent, and imperfect, it changes things. It changes the way I love my husband, the way I parent my kids, and the way I advise others. And I want you to know, it's HARD! I very clearly had the option of sweeping everything under the rug, or pulling it out and looking at it. And, let me tell you, looking at everything in broad daylight can be gut wrenching and humiliating. But it can also be empowering, particularly if you feel supported by the people who really matter to you in your life.

When I was at my worst in the past few weeks, a couple of things really spoke to me. First, in the Living Christmas Tree program this year, Mary had a touching monologue.

...Why would you choose someone like me to carry the Savior of the world? I have no power or authority; why didn't you choose someone people would trust and believe in? Did you have to make it so hard on yourself? 
Why did you come as a sweet, helpless, naked baby? If you had come to earth as you deserved everyone would have known your power and strength. If you had come to us like that we would have had no choice but to bow before you and honor you and praise you- just as the shepherds and wisemen did.  
But you didn't want to demand our reverence or compel our worship, instead you wanted us to come to you on our own. You knew you had to meet us right where we were...where we are, didn't you? 
You came for each and every person you created and you knew each of us by name, even before the beginning of time. You have walked along side us every step of every day. Wealth and stature mean nothing to you - you love the poor and powerless just as much as the powerful and strong. You love us all...there is no place so far that your mercy can't stretch, no pit so deep your grace can't reach, nothing can separate us from your love, there is nothing we can do to earn your love.
No one has run too far, sunk too low, or cursed you too many times to call on you. All we have to do is call your name and declare that you are our Lord and Savior. I was nothing, I had nothing to give that couldn't get from someone else; my willingness is all you asked for.
Secondly, as part of advent, our pastor has reminded us about the stump of Jesse. Think about how, in order to keep a rose bush, or our apricot tree, healthy, we prune those suckers back to mere stumps. Just a few bare, ugly branches. But they get pared down like that, back to the very base of the plant, to encourage it to grow all the more. Pastor affirmed me, too, by reminding us that, most of the time, God isn't interested in delivering us out of the pit. Rather, he wants to shape and build our character through the circumstances we are in. I'm holding on tight.

I am independent AND needy. I am generous AND selfish. I am joyful AND miserable. I am effective AND useless. I am worthy AND unworthy.

I cannot keep my mouth shut. I ache to be known by those around me. In telling my story, I find tremendous support and added confidence. And I hope to be an encouragement to you, too.

Merry Christmas.

Monday, December 12, 2016


Ugh. I hate them.

Several states have now passed CMV legislation. Utah, Tennessee, Illinois, Texas, and Hawaii, I believe. The legislation allows for increased public awareness of CMV, education of physicians about CMV, and requires doctors to provide information to pregnant women about CMV. If you've been to Salt Lake City in the last couple of years, you may have noticed busses downtown plastered with CMV posters.

If this type of information had been available to me 5 years ago, our lives may be very different today. And I believe that it may only take a few passionate parents to get some similar legislation passed in Idaho. I really think it's something I could do.

However, there are many things I need to be doing with my time and I had kind of given myself a pass, to put this particular goal off until...I don't know. Later. But for better or for worse, a couple of months ago, I was contacted by a fellow CMV mommy who lives in northern Idaho. SHE has it in her to push forward on this NOW. So, I informed her of my limitations and I'm letting her take the lead, but I am now taking baby steps forward toward this big goal of CMV legislation in Idaho.

My partner in crime requested that I write up a one page testimony about life with Keira. I put it off for a long time. It was harder to write than I thought. But here it is. My first writing for the purpose of twisting the arms of the powers that be, to educate and inform all the pregnant women of the future in Idaho. Wish us luck.


To Whom It May Concern:

I’d like to tell you about my daughter, Keira. She is a four-year-old girl with an effervescent laugh and eyes that sparkle and light up a room. She is also the biggest challenge I’ve faced in my life. The condition she has is preventable and I am passionate about the fact that every pregnant woman in Idaho should be aware of it. My daughter was born with cytomegalovirus* (CMV). Harmless to most, CMV is a common virus that infects 80% of us by the time we reach adulthood. However, it can have devastating effects when transmitted to a fetus by a pregnant mother.

When I was pregnant with Keira in 2012, my OB/GYN repeatedly told me that my pregnancy was “boringly healthy.” Yet my baby was born with tremendous challenges. Born at 37 weeks, she was technically full term, but she weighed only 4 lbs., 13 oz. She also had microcephaly, an enlarged liver and spleen, petichiae on her skin, and cysts on her brain; all symptoms, I would soon learn from specialists, which were characteristic of CMV.

At my 6 week, postnatal follow up appointment, my OB/GYN attested that CMV had hardly been covered in medical school and after over a decade of practicing obstetrics, he believed Keira to be the first time he had encountered CMV. Unfortunately, my OB/GYN was not alone in believing that CMV was rare. I have since learned that only 13% of women have ever heard of CMV and fewer than half of all OB/GYNs are educating their patients about CMV.

Keira has cerebral palsy, vision impairment, and failure to thrive. She will never walk or talk. She receives her nutrition entirely by G-tube. At age 4, she cannot hold up her own head. She is at high risk for hearing loss and seizures. It is very unlikely that she will outlive her parents or her brothers.

Since her birth, Keira has undergone 14 surgical procedures and spent 100 days in the hospital. She is followed by 16 medical specialists and 7 types of therapists. She takes 7 medications on an ongoing basis. She averages 6 appointments per week, not including school. To date, Medicaid has paid out $278,303.47 on Keira’s behalf.

Here is what I wish I had been told and the information that I believe all women of childbearing age should have access to:

-1 in 150 children is born with CMV
-CMV is more common that HIV, Spina Bifeda, and Downs Syndrome
-1 in 5 babies born with CMV will be permanently disabled by it
-CMV can be prevented using specific hygienic precautions
-Testing for CMV before and/or during pregnancy can aid in prevention and treatment
-Vancyclovir and Immune Globulin Injections may help treat CMV during pregnancy

I had never heard of CMV until it was too late for my daughter. If my OB/GYN and I had been aware, we may have been able to prevent it and/or mediate its devastating effect on my daughter.

It’s unconscionable to continue to keep this information from pregnant women. In the U.S., typical prenatal care routinely screens for a numerous conditions (including HIV, cystic fibrosis, and toxoplasmosis) that are far less common, less devastating, and/or less burdensome on society than CMV.  CMV needs to be added to the list of conditions that are screened and followed by physicians.

It has been estimated that educating the public in our state would cost $40,000 the first year and $26,000 annually after that. Several states (including Utah, Texas, and Tennessee) have already begun to implement CMV legislation. I pray that Idaho will soon follow*.

Thank you for taking the time to read our story. Do not hesitate to contact me if you have additional questions.


Rebekah Ponsford-Hall, PsyD

* For more information about CMV, visit or the Center for Disease Control website
* To review the CMV bill passed in 2013 by the state of Utah, visit