Since our move, it's been so good for our family. The kids have room to run, a place to build forts, we are closer to therapies for Bryer, and she's started pool therapy every Friday with her physical therapist. Her body loves being in the water and she concentrates on how her movement feels different. Anytime we can bring attention to how she moves her body, it's a good thing!
July 2012
I think sometimes we get so anxious for things to move forward or to change that we forget that it won't always be like this. I won't always have a knee scooter. I won't always have kids that are little and needy and want to maul me. I won't always feel like I'm 'stuck' in this process. Sometime, whenever the time is right, this will all be behind me. I visited with a friend the other day that wanted to understand why we hadn't taken a plea deal, just to get all this behind us. I said, "I am held accountable to God - and only God - in my words, my actions, and my honesty. I cannot plead guilty to something I did not do. That's no better than being a coward. If I am doing everything I need to be doing to stay close to God, then I have to have faith that He will lead us to the next step - the next expert witness, the next therapist, the next whatever."
Shortly after that conversation, the blessings and a little relief started pouring in. We had a meeting with our attorney and listened in on a phone conference with our main expert witness, the neurosurgeon from Maryland. He has reviewed the files and had explanations for (almost) everything! Do you know what kind of relief this has brought?! He pointed to a type of meningitis that often doesn't show up on a meningitis test. He pointed out overlooked details that would have raised flags along the way - high protein levels in her blood at the emergency room, the lack of oxygen causing so many other complications along the way, the lack of oxygen on the scene as they couldn't get the black box open to give her oxygen, the raised heartbeat as she was intubated, no neck or rib injuries, and the lack of any bruising or discoloration at the site of the fracture. He was frustrated with the doctors for overlooking the complications from chicken pox, when that should have been a key factor. He went on with illustrated examples as he explained what happens in the retinas when the brain is under pressure. He talked in layman's terms, not official doctor vocabulary, so we could understand. As he explained things to the attorney on speaker phone, I felt the confirmation that he would be a good witness in court. He could relate to the jurors and not talk over their heads. They could understand what we do now. The only detail he felt inadequate in testifying on is the skull fracture. That's why he has been in contact with the pediatric radiologist, but no one has heard back his thoughts.
As Jason and I stepped through the double glass doors (okay- he stepped, I rolled along on my knee scooter) to leave our attorney's office, we headed for the van and both took a huge sigh of relief. Literally. Like all that stress and heavy load was just left in that office. We felt a physical calming for the first time, now to match the spiritual calming we have had along the way. Both are needed. We are spiritual and physical beings. We have both spiritual and physical needs and on this day, both sets of needs were met.
Our jury trial had been scheduled for August 2012, but the neurosurgeon was not able to take that time away from his medical practice at that time, and we also were still waiting on an official report from the radiologist, so the jury trial was postponed until January 2013.
In the meantime, as Jason and I kneel for our couples prayer at night, many times we continue to pray not only for our experts and attorney, but also for the prosecution. It's a humbling experience to pray for those that are against us - the woman prosecutor that pushes so hard for me to be punished; we pray for the judge specifically that his mind will be clear and sharp and that he would make wise decisions; we pray for the hearts of the jurors that their hearts will be prepared to hear the evidence on both sides and be able to discern between the two. It seems so cut and dry to us right now, but we know the information the prosecution brings to the table also - they see it as a violent act, a mom who just snapped, frustration and anger. The prosecution has sent court supenias to a handful of our friends - and to Jason - to testify against me. I can say if I haven't felt anger toward the prosecution up to this point, I certainly didn't have those feelings toward my sweet baby. They have rocked my world much greater than any crying baby ever has!
September 25, 2012
Changes in Bryer in past month….Her communication makes me smile and shows that she's come ready to this world to make the best of it. She understands simple questions (Do you want a drink? Do you want to read a book?) and answers /hu/ for ‘yes’ and no sound for 'no.' That alone has made it easier to understand her needs! Now we just have to go through a list of questions to get the right answer. She asks for /moe/ (for ‘more’) a lot - and could mean more eating, more singing, more toys, or a repeat of whatever just happened. /Mama/ and /Dadadada/ are less frequent, but are definite names of people and uses them in context. Just in the last week she started saying Ma-MA while we are in the car. It took a while, but we figured out that means 'music' and could mean she wants the music on, she wants it louder, or she wants a different song. She responds when we ask “What does the kitty say?” with a high pitch squeak and “What else does the kitty say?” with a tongue spitting for purring. She's also started imitating the syllables of words she often hears - /uh-uh/ could mean Hunter, Amen, outside, anything with 2 syllables. So we just try to tune into her world and fit all these puzzle pieces together to help her express herself. She's in there and has thoughts and feelings and needs that she wants to tell us about!
In addition to the verbal words, she also signs “all done," “bye-bye,” “more,” “eat” and “night-night” and sometimes “me” when answering a question. At different times she has correctly identified her eyes, nose, mouth, tongue, tummy, and knee – now she’s just trying to sort through them all to get them straight. Sometimes she pokes her eye, when really she should be showing us her mouth, but then realizes that's not right and holds her hand out so we can show her where her mouth is. She's a smart little stinker!
I have officially weaned her from nursing. It was a big step met with faith to 'let go' and trust that she wouldn't be taken from me. It's funny how our minds play emotional tricks on us. She has adjusted so well to us helping her drink from a cup. She has also started feeding herself! It's amazing how many billions of connections are made in the brain to signal, "Oh, I can put my hand down on this pancake, close my hand around it, move it upward toward my mouth, feel it with my lips and tongue, and take a bite!" Then the whole chew, swallow, breath comes in. This whole slow-motion process is just an amazing miracle to me!
Visually - We met with a low-vision doctor and he suggested we try colored lenses. He explained that the optic nerve sees in three colors (red, green, and blue). Sometimes one of those receptors are injured so we try to maximize what she sees with tinted lenses. He's chosen purple for her after her exam, as the layers in purple have elements from the other three colors. She keeps her glasses on better if her hands are occupied and seems to visually attend to things for longer periods of time with her glasses on, as well as during feeding times.
Her eye therapist brought an Invisiboard (a fuzzy, black, tri-fold stand-up wall) to help contrast her bright colored toys, but she pushes it over like it's in her way. She will grab toys on the table as she plays in her corner chair. The table has black mat on it to help her see the contrast of her toys. Her regular eye doctor hasn't seen much difference in her optic nerve after this week’s dilation and not much change on the teller cards either, which were tested just after taking her glasses off. All these new things I'm learning that I just took for granted with being able to see!
*****
My Mom surprised me with tickets to Time Out for Women - with musical guest HILARY WEEKS! She's poured out her heart and soul into making music and my spirit has been so touched by her work! As I saw her running around and taking pictures with people before the show and signing autographs, I told my Mom, "She just doesn't know how awesome she is! Who does that?!" Then, I got my chance to meet her in person and she signed my polka dot umbrella (you know, for 'Dancing in the Rain.') I seriously love that lady!!! She has been an answer to prayer to keep me from depression, to help me understand my divine potential, to remind me what my purpose is, and to give me confidence. Of course, it's not her, but her allowing God to work through her music.
She brings a fun sense of humor to the stage along with her inspired music. Here's one of her older funny videos, just for fun to illustrate the many sides of Hilary:
The video I wanted to post won't upload, so go to https://www.youtube.com/watch?v=Ewmy_8AKkZw if you want a good 'Mom laugh.'
October 2012
Miss Bryer turns two! Great detail was taken in creating her cake. Music is 'her thing' so that was the inspiration. I made it black and white for the visual contrast, and the piano was a perfect object to use. I stuck red, glittery curls in the top so her eyes would be led to it. I so bad wanted her to be able to actually SEE her cake! For weeks, we've been practicing with her to not cry at the end of Happy Birthday. I don't know what it is about the end of that song that makes her cry. Maybe it's a sensory thing with the clapping at the end or she's sad that it's over? We haven't pin pointed the reason for such emotion.
This month I also made a decision that was scary and empowering and overwhelming. I have been researching and talking to other moms and praying about changing doctors. I don't know why I have been so scared for that switch, but it's very real. Will they use it against me in court? Will I be portrayed as something I'm not? Each time I have to take Bryer to the pediatritian I get anxious and up tight. I have to walk in and face one of the men that may testify against me. We have been cleared from most specialists now, but this main doctor has still been in the picture. Honestly, if I were diagnosed with a life-threatening illness today, I would go get a second opinion. So maybe this is similar - just go to another doctor. But it's not really that simple. What if that new doctor reviews her file and says the same thing? I have to put myself out there yet again. It takes courage over and over again.
So, I did it! I made the leap and switched! It helped to have a friend walk me through it. Her brother-in-law is a doctor and I hoped he would be a good fit. She talked with him about specifics with Bryer and he asked her a lot of the same concerns that our expert witness did. Once I felt like he was 'safe' and he would take Bryer on, I made an appointment.
At the very first moment, he put me at ease. He had a seat in the chair across the exam table from me and literally kicked up his feet to chat. He expressed his concerns about her history in a positive, non-judgmental way, thoroughly looked her over, and complimented me on my diligence in Bryer's therapies. It is such a relief to walk into this office and not feel like I'm on the defense anymore!
Today I layed Bryer down for a nap and as I stepped out of the room and cracked the door, I watched her. Something I normally don't do, as her naptime equals my catch up time for making dinner, helping with homework, or having 2 hands to clean up. I just stood, watching through the crack in the door; her eyesight unable to see me spying. She lifted her head up, trying to free her arms out from under her chest. She spoke, "Mama" in her sweet voice, and then layed her head down peacefully. As she layed there still and blinked her eyes, tears came to mine. At two years old she can't move on her own, can't protect herself, tell us exactly what she wants, or how much she loves us. I had a moment of greif for the hopes I had for my baby girl.
On the positive side - because there is always a positive side - she has curls like none of the other 4 kids - the kind I had when I was little - and the cheeks, profile, and nose that only resembles me. She loves my off-key singing, my silly rhyming words, and loves to snuggle. (After all, she can't get away!) There is so much she is learning to do. She may or may not end up on the softball field or basketball court, but I have learned so much more from her in 2 years than I could have in a whole lifetime of 'normal.' She has brought me closer to my Savior, keeps my eternal perspective in check, and has a giggle that is contagious. She IS 'my' kind of girl! And indeed, I have the best of both worlds in a girly-girl with straight hair and a curly headed giggle box.
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| Piper with a smoothie mustache and Bryer with a smoothie goatee |
I was driving down the freeway the other day thinking how much I am able to do as a mom with appointments, cooking meals, shopping for clothes and food, practice and game schedules for 3 kids, teaching my kids how to clean to be responsible, and a million other things moms do. I wondered how I was able to 'do it all' and wondered if I was nearing a cliff I didn't see coming; some kind of breaking point. Can people tell when they are going to 'crack' and feel it coming - because I don't feel anything of the sort. Will I wake up one day in a depression or just break down and fall apart one day in the grocery store? Would I see it coming or is it sneeking up on me unnoticed? I feel so on top of the world and feel that I'm fulfilling every hope and dream I ever had as raising our five kids. I can look at Jason and each of the kids and feel so much love and feel like my life is complete. As I pondered on these things, the thought that came to me was, "Through Christ all things are possible. He is where I receive my strength." He is there to make sure my pot doesn't boil over during dinner preparations when that might be the straw to top off my busy day. He is the one I can count on when I check on Bryer before bed, but still worry about her breathing. I turn it over to Him that He will watch over her while she sleeps so I can rest also. He is there. 100% real. He is there when I wonder how I can wrestle 3 kids in the stands for the 4th basketball game of the day while Jason coaches, and a friend asks if one of them can come play. He knows my heartaches, my joy, my strengths, and my weaknesses. He is there for me. He is how I feel like I can 'do it all,' and really it's not me doing it all.
November 13, 2012
My heart reconnected with the sweet baby girl I gave birth to just over 2 years ago. I looked through pictures of her progression in the last 2 years and was amazed. Most moms would look through baby pictures and think the same thing, except that their children have developed so much more beyond Bryer. Or have they? We come to earth so new and sweet, so fresh from His presence. And the world hardens us. We learn to walk and fall down. We learn to read and make mistakes. We learn to drive and crash. We learn a million things by trial and error. About that progression - I think she is more developed spiritually. It's when she laughs for no reason, that we blame 'her angels.' Or when she quiets down after crying when we start to say family prayer. It's those moments of keen spiritual awareness that she is in tune to. I feel that there was a shift somewhere in time between the baby girl I gave birth to and the one living in our home today. Did time stand still? Did she make an internal change at the time she was in the hospital? Maybe it's the shift of my hopes and dreams for the baby at birth are not the same as Bryer now. There was a shift there. And it reminds me again that the worldly, physical things are really not as important as they once seemed. She sets a good example for me.
I often wonder what God was doing during the day of December 19, 2010. I have no doubt he was watching over me, but I would like to know His reaction to the events as they unfolded. Did He cringe as I stood at the door to go check on Bryer? Did He cover His eyes, peeking out between the cracks to see how I would handle it? Or did He stand tall with a tender smile on His face, knowing with complete confidence that the events that would unfold would only be a strength to me and that I could handle it? No doubt He had prepared me, and 'if ye are prepared, ye shall not fear,' as the scriptures say.
*****
As Christmas gets closer, we have started studying each of the people and animals in the nativity for our weekly family lesson. This week was Joseph. I really connected with him and feel like I have my very own Joseph in Jason. As he went door to door, trying his best to find a room for Mary to give birth, Joseph was the ultimate protector. He kept things together when his wife was under such turmoil. He kept her calm, he pushed physical things out of the way to make her more comfortable. Although the scriptures don't say it, he was obviously a great strength to her. I feel the same about Jason as he makes call after call to expert witnesses and attorneys. He keeps me calm when I just want to cry. He pushes out the physical barriers to make me more comfortable. He is a great strength to me.
January 2013
Court was Friday - a pre-trial to make sure everything is lined up for the end of the month jury trial. I geared up and called in for Piper's help. We pumped out 10 freezer meals in 1 afternoon. I'm just saving them for the end of the month of court drama. And in the wierd, strange, slight chance (however slight - it's not a fun idea to have wondering around in the back of your head) that I might not be here after that, my family will eat home-cooked meals.
Driving to court was different this time; for Jason and me both. When we drove into the little town where we once lived, I didn't feel the stress I normally do going for court. Even pulling into the parking lot and going inside, I just didn't feel it. I wasn't uptight. I wasn't concerned. It was a peaceful feeling. Maybe we needed to get to that point for the rest to go as it did.
So, we entered the courtroom, along with a few others that were waiting for their case to be called. As we waited our turn, we watched a sentencing happen, which I had never seen before. There was a lot of laws read and amendment numbers to explain why and how. Then the judge sentenced the man to weekends in jail. Weekends?! Is that normal? I was taken back to my dream of me spending weekends in jail. They can actually sentence someone to that? I thought that was just a strange detail of my dream! How weird that it can actually turn out that way?!
Our attorney met with the judge in chambers and decided the details before we went 'on the record' in the courtroom. My attorney has still been having a hard time getting a hold of the radiologist at UC Davis. (Do they not know that this is my life on the line?! My family?! My kids?!) The radiologist received the records in November, but we haven't heard anything yet about anything and they haven't been able to contact him. So.... The judge basiclly gave the ultimatum "unofficially" (on the stand he was very professional) that we either go to trial at the end of the month without the radiologist or we postpone it until April and also move it to a bigger county, per the prosecution's request.
The discussion about finding a set of unbiased jurrors has been conflicting, so that definately played a part in them wanting to move the case to a bigger county. This smaller county seems safe to me. It's where we live. We should be judged of our peers - that's what a jury is all about, right? - being judged by the people where you live. It was a hard decision. Could I let go of that safety net and hope that the jurors we've been praying so earnestly for, are really from the bigger county? We don't know which county they live in, but God does. And I know He answers prayers. I just always pictured those jurors coming from our small county. The radiologist is definitely one that is going to be optimistic for our side and we need his testimony along with the neurosurgeon! My attorney and Jason both left it up to me. It would have been so much easier to let one of them choose.
Ultimately I decided on moving the location and pushing it back to April. The judge made it clear that he was not going to allow us to move it again. This case is over a year old and needs to be heard, was his reasoning. He also mentioned the financial strain on the smaller county tax payers to have to send out individual juror questionnaires before they actually interview them.
Moving on. Again. And pushed back. Again. Sometimes it's frustrating, but it's another few months I am guaranteed with my family and I'm not living my life differently than I would be otherwise. The main things are the thoughts that run through my head or the planning (should I sign kids up for swimming lessons since I may not be here, should the kids be registered for soccer if I'm not here to take them to practices?).
Now, my life gets prolonged and I am able to spend more time teaching and organizing and making the essentials into habits for my family in the unlikely event I am not here later. Someday this whole thing will be over and I will have felt like I died and went to Heaven - for unlimited access and time with the ones I love so much. It will feel wonderful!
March 17, 2013
I started running this last week. It's been good for my body, but even more than that - it's been good for my mind and spirit. I have always felt at my best when I am doing 3 essential things - regularly reading my scriptures, drinking enough water, and exercising.
There are lots of things and symbolisms I am finding as I run. During last Sunday's lesson we talked about how real Satin is and what he wants for us. During my run the thought occurred me to that he doesn't want me out there running. It's good for my body, spirit, mind, the example I set for my kids, the energy I have during the day, the good worn out feeling at the end of the day - he doesn't want me to have any of that. It was enough of a thought to push through the hard part of my run.
I have also really thought about individuals as I run. I think about people that are especially inspiring to me - real life friends and family that I have relationships with. I think about the hard time 2 of my past young women are going through since losing their Dad to a heart attack. I think about other young women I've taught that are reaching pivotal points in their lives - marriage, first babies, church activity. I think of other friends that are on a journey toward making better health choices. It's been another way for me to push through the tough hills on my runs, to connect with those that are executing hard things. They have no idea of the strength they are to me.
I am thankful that Jason is supportive of me running and finding time to stay in shape. I hope I don't take that for granted. He's been so good to be up with Bryer during the night if she's up or take care of her in the morning if she's up before I leave to run.
When I played college softball we did a lot of visualization. We pictured a pitch in slow motion and exactly how our body would react to it. We pictured ourselves making a perfect play, diving for a ball or making a perfect throw to get an out. The idea is that our minds are stronger than our bodies. We can train ourselves to think more positively, to visualize exactly how to execute a situation.
My rule is not to stop running on a hill. It's a good thought to have for life - never give up in the middle of a trial. Wait until you get through it to take a breath or a break. For me, this has been one tall mountain to climb. Heavenly Father has provided short plateaus along the way for me to take a break and breath. It helps to have the support of people behind me as I'm climbing this mountain, like they are physically pushing my body when I can't go on my own. I remember stories of the pioneers feeling like 'angels' were pushing their handcarts. It's true! Another thought I've had as I run is to be aware of what my body does on the downhill parts. Do I hold back? Why? Do I let my body release and just flow? What triggers that? It's been good body awareness for me, but also trying to find some symbolism in it. In the easier parts of life, do I make it harder than it should be? Holding myself back or reserving some of my energy/time/spiritual breakthroughs and feel like to have to 'save up' for when it gets hard? Or do I let my body/mind/spirit do what it's supposed to and trust that God is in charge? He will carry me and help me through the next up hill when I come to it. I have used my college visualization days to try to memorize the marks on the road, what the road feels like under my feet, how my arms move when I'm running up hill.
After my runs I have found a quiet place to pray... in the dirt... on my knees. It's a wonderful place I wish I could memorize the details of. I try to visualize that place when I'm not there. The crisp air after a morning run, how the dirt gives in to my knees, the smell of the growing crop nearby. Maybe I'll have to recall this place if I'm not able to make it back here.
April 2013
A friend of mine is on bedrest with her third pregnancy. I felt like I could help her out with her own kids since they are about the same ages as my girls. Today we walked down to pick up Piper from the bus. As we walked back to the house up our long dirt driveway I watched as Piper and our little visitor, right about Bryer's age, hold hands and ran giggling together up the driveway. I pushed Bryer up the long driveway in the stroller as I watched Piper's straight ponytail swing back and forth and our little friend's curly blond hair bounce as she ran. I listened to them giggle and make plans of what to play when they got inside. I couldn't help but think of them as sisters - something that it would have been like if Bryer had never gone to the hospital. My heart hurt for a minute and I got teary, just imagining what could have been.
Then the thought came to me that after this life Bryer's body will be made perfect. Perfect! No tight muscles. No wondering eye. No preference toward only using her left hand. All her infirmities will be perfect. And my sadness turned happy at that possibility. What I thought was a sad moment to view as Piper ran hand-in-hand with our little friend up the driveway, became a reflection of what to look forward to in the eternities. This life is really just a blink of an eye.
April 20, 2013
We got an official full report from the radiologist today! He is the lead pediatric radiologist at Stanford University Medical Center. I read and re-read and looked up terms and tried to comprehend all of the medical vocabulary. In the report he wrote about how CT and MRI scans are just a snapshot in time. They can't tell what's 'accidental injury' (AI) and what's 'non-accidental injury' (NAI) from looking at a scan. What they can tell is some general timing of things and what the issues are at hand. He stated that the brain hemorrhaging could have taken place anywhere from 3 hours previous up to 7-10 days previously. Other areas showed hyper-acute to acute hemorrhages that were at least 2-3 days old. He also stated there may have been a 'lucid interval' where the infant seemed fine, or maybe extra sleepy, or fussy. He stated (in very confusing doctor terms) that there seemed to be some clotting factors that were influencing the amount and length of brain bleeding - something not related to abuse. Then two sentences toward the end of the report stuck out to me:
"In the context of these findings, along with the widely acknowledged "lucid interval" phenomenon, whether post trauma (AI or NAI) or associated with an evolving medical illness, it cannot be assumed that a given caretaker is responsible for such injury. This is particularly important when the psychosocial evaluation of the caretaker reveals no at-risk features for abuse."
Taaaa-Daaaa! I wanted to dance around my living room! I wanted to shout it from the rooftops! I am innocent and have the experts to prove it! But, shhhh! I have to stay quiet about it - just as every other detail of the case. Keeping 'secrets' does not sit well with me. Let's do this trial!
April 22, 2013
Our trial was scheduled for today, but the timeliness of the report we received 2 days ago and trying to get expert witnesses for both sides adjusted, the judge has rescheduled the hearing for October 2013, 6 months out, to allow them time to review the new evidence and time scheduled away from their medical practices to come testify.
Hurry up and wait. Move on. Again. And postponed. Again. It's killing me! Let's just get this done already!
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