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

Awakenings

Remember the early 90's movie? The one, based on a true story, where Robin Williams gives L-Dopa to a bunch of catatonic patients and they magically come alive? Recent weeks have made me recall this movie, as Keira seems to be building momentum in various ways and we are seeing mini awakenings in her all over the place.

So, there's this old medication called Baclofen. It's basically a heavy duty muscle relaxant. I've been hearing about it since day 1 with Keira. I got the impression that its use was somewhat inevitable but that we should put it off as long as we could because there could be a lot of unwanted side effects including cognitive slowing and seizures. Doctors said they typically used it on patients whose parents literally couldn't extend their limbs to change a diaper or clothe them. Also, it's common for Baclofen users to eventually need a Baclofen pump to administer the drug directly into the spinal cord. Visit after visit, I'd hear about this drug, but it seemed that Keira's tone wasn't "bad enough" to warrant the drug. One by one, though, things seemed to be adding up and I eventually wanted to give it a shot. The doctors, I figured, typically saw Keira in the morning, when she was at her best. Keira has always tensed up her arms and legs during the day. This was, we thought, to express being overwhelmed. I was also thinking about how in the afternoons, typically JUST the afternoons, Keira gets more and more cranky and uncomfortable. She has to have someone directly interacting with her to sooth her. She often retches and/or vomits at that point in the day, and when we finally put her to bed, she cries for a very long time before falling asleep. Plus! We know that Keira has a high pain tolerance. So I thought, what if all this is related to muscle tension/pain/fatigue? What do we have to lose? The final straw for me was seeing Keira sleeping like this nightly...

Notice the awkward/unnatural position and rigidity.

And waking up like this in the morning...

When she wakes up like this we say she's "curly." So I consulted with the physiatrist, discussed it with Jeff, then decided to give it a try.

Magic! After just ONE DOSE, Keira woke up laying flat in her bed. She was also very "talkative" that day. She was silly and giggly. Almost like she was a bit inebriated. The drug caused some lethargy initially, but as we toy with her dosage, she seems to be "awakening" more and more. Here are some things we have noticed:

• Waking up lying flat and with soft hands
• Making more sounds overall
• Picking her head up higher and longer and working harder in PT
• More coordinated tongue movements in feeding therapy
• More content and easier to keep calm in the afternoons/evenings
• 90% reduction in muscle tension, leg extension, and teeth grinding
• More kicking in swimming
• Eating her ENTIRE bottle for the first time in months
• Falling asleep more easily at night
• 95% reduction in retching and vomiting

Needless to say, this is huge. We have not seen any scary side effects at all. Perhaps we are also on the road to getting her to tolerate more food. Of course it makes me wonder why we didn't try it before, but I try not to go there. I need to just pat myself on the back.

The Baclofen did have a honeymoon period. After a couple of weeks, we were still seeing very good effects, but not quite as awesome as before. We were assured that this is a typical reaction. What you may not remember about Awakenings, is that the effect was short lived. The treated patients gradually regressed back to their former state. We are optimistic that, unlike Awakenings, the Baclofen will continue to work for her for a long time.

Not long after starting the Baclofen, Keira was offered a "trial week" with the JumpStart program. Jumpstart is a program for kids ages 3-6 who qualify for intensive speech, OT, and PT services. The program offers these therapies, plus group social activities, for kids 3 hours per day, 4 days per week. Keira has been on the waiting list since she was 2. This is a LONG TIME if you realize that all the research recommends the more, the earlier, the better, with all things therapy.

I have some very mixed feelings about the program. It is the ONLY program of its kind in the area, so it is in high demand, though they only take about 15 kids at a time. The program feels really competitive and exclusive. The kiddos with Downs Syndrome seem to be the elite of the disabled and appear to get into Jumpstart more readily than other kids. I get it. Kids like Keira are hard work both physically and emotionally. The "milestones" may be fewer and further between. Another characteristic of Jumpstart is that it employs many newcomers in their fields who undoubtedly feel overwhelmed by kids like Keira.

Anyway, a year ago, the program told me that Keira would not be admitted because they didn't think she had the stamina. Last week, she completed the "trial" and, partly due to the Baclofen, Keira did better, I think, than anyone expected. Last night, I asked Jeff if he'd checked the mail, because I knew that Keira's acceptance or denial letter would be there. He said, "Do you think she got into Yale or Harvard?"

"RIGHT?!" I said. It seems so backwards.

Later last night, Jeff texted me and said, "Keira got into disability college!" So, I guess, Keira will be starting the program in December. This is good news in that Keira will get hours and hours of intensive therapy. But also a bit frustrating at times because I resent going in there and feeling defensive, as if we have to continue to earn our keep in this prestigious club. There is a strict attendance policy and we are forbidden from having our kids in other, private therapies while they are in the program. We will pull Keira out of school to take part in this, but overall, I think it will be good for her.

We have been working with speech therapy on getting communication devices that can be used at home. Particularly now, since she has a good chair in the house, where we can mount various switches, it's a good time to invest in some equipment. This past week, we've been enjoying the use of her "step by step" switch. How it works is that someone (myself, a therapist, etc) records messages into the switch in segments. Then, each time Keira pushes the button, she "speaks." It's a little weird putting words in her mouth, but it's fun that Keira can come home with the switch from therapy and "tell" me what she's done. Or she can participate in dinner conversation by "talking" to us. It's working on communication and motor skills as well as teaching her another way to get attention, aside from pulling her head out of her headrest!

Keira seems happy with her progress, too!

I'm really excited about where Keira's communication is going to go. I feel like she understands a heck of a lot of what we say. If you know what to look for, she responds pretty readily to lots of names and lots of words. For example, when Jeff gets home, he'll ask her what did you do today? Did you see Garren? Or did you see Deana? And Keira's face (60% of the time) will brighten according to what actually happened that day. I love that she has the opportunity to make choices, too. "Do you want Daddy to change your diaper? Or Mommy?" (Did you see my trick there? She always picks Daddy. Ha ha!) Oh! Another example of her communication was when we had our small group at our house last week. Keria was sitting in her chair, between myself and Kori. When Keira began to cough I took her in my arms, and she would NOT stop giving me her "no" face. I eventually figured out it was Kori that she wanted!

When the boys were babies, I talked to them constantly. I narrated every activity, whether we were driving in the car, walking through the mall, or going down to sleep. With both, as with most babies, it wasn't long before they started to respond and eventually speak. I never talked to Keira. Maybe because I was afraid that even my speech was over stimulating. Maybe because I thought she wouldn't respond. Until now. We were taking a bath the other day and I noticed that I was telling her all about each body part as I washed it. Just like I had with the boys. Without realizing it, my belief in her ability and desire to respond has increased dramatically and this is a wonderful awakening for us both.

Because retinal and other vision problems are common in CMV babies, Keira's been seeing an optometrist since birth. Though we see him regularly, we've gotten very little information from him except that she probably wouldn't benefit from surgery. It's been difficult to get her to open her eyes in the exam room, let alone pay attention to the toys and stimulus card that the doctor used for the evaluation.

Over time, our curiosity about Keira's vision has increased. In PT and OT, it was frustrating to not know whether she preferred the right because she could see better, or because she could move better in that direction, or both. We decided to seek a second opinion from a developmental optometrist who specializes in vision therapy. Knowing we'd have to pay out of pocket (because, apparently vision therapy is on par with woo woo), we decided to give it a shot. And boy am I glad we did!!

This doctor won me over from the start when he admitted he was a little intimidated after seeing Keira in the waiting room. By now, you should all know I appreciate candor! He promptly became invested in Keira. He earned her trust (therefore her eyes remained open!) and was willing to think outside the box. He thought what I had to say was important and seemed to understand the value of sensory integration. We learned more from him in 20 minutes than we'd known about her vision in 4 years. She likely sees much better to the right and in the lower quadrant. She does have peripheral vision. She seems to have some left side neglect, meaning she often doesn't see there, but could be trained to, potentially. She works very hard to track her eyes together but still operates like an infant in this way. Her vision is probably fuzzy, if not double, much of the time. The reason she closes her eyes is not just because she's overwhelmed, but it's her equivalent of squinting to try to put her environment into focus.

But the best part was when the doctor decided to put a prescription in front of Keira's eyes to see what happened. It was amazing. She. Woke. Up. Her smile and attentiveness went beyond her excitement about having Daddy's attention. It went beyond the novelty of having something silly resting on her face. She was alert and looking around and her eyes were teaming together! Plus, she was so tickled by it! In fact, for the rest of the day, when we talked about her "glasses," she would just laugh!! We know that getting an ideal prescription for her is going to be a long process, but we are so excited about the implications! Just think. If she can see better, can communicate better and discover her environment more! Finding baby girl glasses via Medicaid is not a Lens Crafter's sort of specialty. So it'll be awhile, but watch out for updates!

Well, folks. That's the end of my mommy retreat. It's been perfectly lovely. I may not post again for a long time, but I will be back. Thank you for reading.

4! (A Birthday Album)

Keira turned four on September 9th. And what an eventful four years it's been. I feel like I've aged twenty, but I'm so thankful for all of the family and friends around us who have lived this past four years with us. To steal the title of a new movie coming out...there's been a lot of "collateral beauty."

I was really excited for Keira's birthday. For months, I had been meeting regularly with the moms of some of Keira's therapy-mates. We've become good friends. I was excited to have a party for Keira in which I could invite her little buddies. We invited several of her friends as well as their families. Our new patio was completed just in time and so the birthday party served as a little housewarming as well.

The day of the party, Keira seemed excited. She clearly knew there was something special going on. You are My Sunshine seemed to be the perfect theme, not only for us, but for all of her little friends. Keira wore the bright yellow dress that her brothers brought her from Hawaii. Only 2 kiddos and their parents were able to attend, but we had a good time. A craft. Trampoline time. Dinner. Her friends brought some very thoughtful gifts (She's not easily interested in your average toys, so this was very touching).

I have to admit, though, that after the party, I was extremely let down. I was surprised at myself. Not sure why I was upset. To me, the party felt off. Maybe a little forced. It stressed me out that I didn't know whether Keira was having fun or not. Whether or not she liked having all these people over. She had about an hour in which she tolerated all the hubbub, but then she seemed to close in. She wasn't interested in tasting the cake. She was too overwhelmed to open presents with all the guests there. I suppose the party was just a reminder, a flashing sign, reminding me that Keira isn't "normal." In the end, I think the party was worthwhile. We'll do it again.

 

 

 

Rewind. Summertime!

June

When I arrived home from my trip in June, our house was listed and it sold in just two days!

July

Keira is full of surprises. On the fourth of July, we typically go out to Jeff's grandparents' house for family and fireworks. They live atop a hill out in Marsing and the views are just great. During the day, Keira had been giving all of the signs that she was overwhelmed (coughing/vomiting/muscle tension), and I nearly stayed home with her. For whatever reason, we went ahead and took her and we had so much fun. First of all, her distant baby cousin, Bethel, was there, along with many other cousins, and she soaked up all of that attention. She spent an hour, at least, examining the cool blinky ring Grandma Joy gave her. She also unexpectedly loved the fireworks!! Sometimes it's really hard to know how she'll react!

August

August was busy, busy, busy. Jeff took the boys on a backpacking trip. The boys also went on a trip (Hawaii!!) with Grandma Janie and Grandpa Dave. Somewhere in there, we moved! Here's a picture of Keira holding her own pen at the closing.

August and September were a little rough. My parents had 10 days between when they got the keys to their new house and when we were going to have to vacate our old house. They had huge plans to remodel their new place, so as soon as they got the keys, they tore up/down 3 walls and ripped up most of the flooring. Unfortunately, putting it all back together has been a much slower process than they thought it was going to be. It was hard for me to move in to our new place, and feel good about making it ours, when my parents were essentially squatters across the street.

Now, 3 months later, my parents are close to being finished with their remodels. They've finally moved into their bedroom. And I think that they both really like their little "cottage." This is a huge relief to me and Jeff and I are enjoying making our new place our own.

We started with pouring a new, large, patio out back. It is fantastic. It's easy to roll Keira out there and seats lots of people for barbeques. Inside, we stripped lots of wallpaper (sorry, Mom!). I've done lots of painting and put up "tile" in the kitchen. Jeff bought me a new chandelier for our 15th anniversary. To help ease the transition, I hoped, I painted Keira's room (my old bedroom) to look just like her room in the old house. We recently hired a finish carpenter to build windowsills, add crown moulding, and transform the fireplace. I love it!

Mom's old living room

My new living room

Mom's old dining room

My new chandelier

Mom's old entry

My new entry

Mom's old kitchen

My new kitchen

The boys were not particularly excited about the move. I think they both worried that they'd miss the old neighborhood. The boys were actually in Hawaii when we moved, but the day they got home, we had a big family Nerf gun battle in our new house, thereby "staking our territory." It was a great evening.

The house is WONDERFUL. Better than I even expected. For one, we have Keira's wheelchair in the house, making it easy to zip her around to wherever we are. But being on one floor has other advantages. I feel like we are all together, whether I'm cooking or doing laundry, or working at the computer. One level just feels more cohesive, yet its big enough for us all to have our own space. It actually feels enormous to us compared to any other place we have lived. We feel so incredibly lucky and thankful to my parents.


Just before we moved into the new house, Keira got her new wheelchair. It had been months in the making to determine exactly what she needed, had all of the twenty-something parts authorized and paid for (the whole thing cost more than our first car), had it built and shipped. She was so cute the day we got it. She seemed to pleased. She looks really good in it. By that I mean, she seems well supported. She is able to sit up quite a bit taller than she ever was in her old chair because it fits her so snuggly. The chair is narrow, which makes it easy to fit through narrower doorways in the new house. However, no adaptive device is a slam dunk. The thing that makes this chair great, namely the small size, is also its worst characteristic.. The small wheels make it difficult to push her over even the most minutely uneven surfaces. I had to teach the boys to be really careful, so as not to accidently tip her over completely when trying to get her over a bump in the sidewalk or a gravel patch. Second, we ordered a very cool, high tech headrest that was supposed to support her head really well, and with a strap on her forehead, it would keep her from pulling her head continually out of the headrest (something she's done a lot in the past 6 months. We think its a way of communicating and/or getting attention, but it looks so uncomfortable and can be a problem during therapy, or if I have to pull over while I'm driving in order to fix it). Well, we were reminded that K has microcephaly. The head strap was too small and Keira could still pull her head away from the headrest. Rather accidentally, Jeff discovered that the forehead strap served its purpose if it was positioned as a chin strap. The PT thinks Jeff is a genius. We've since ordered a child size CPAP chinstrap and this seems to do the trick.

Trying out her new chair

All the time!!

The head strap that doesn't work

The chin strap that does

Oh! And school started in August. She was happy to go back and she seemed to do well going twice each week. The teachers love her and, if nothing else, it gives Keira something to do and kids to hang out with. Keira seemed fussy a lot of the summertime and all I could surmise was that she was bored. So this was a welcome opportunity.