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!