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.

Politics

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.

Sincerely,

  

Rebekah Ponsford-Hall, PsyD

CMV Mom

* For more information about CMV, visit nationalcmv.org or the Center for Disease Control website

* To review the CMV bill passed in 2013 by the state of Utah, visit le.utah.gov//~2013/bills/static/hb0081