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Sunday, July 27, 2014

#32 - Our Best Laid Plans Are Crashed (Journal Entries Through Sept. 13, 2013)

May 2013
In the midst of so much going on legally, we still have to make decisions for Bryer's therapies.  As much as we didn't want to accept the Infant/Toddler Program in the beginning, the therapists have been wonderful!  We look forward to her OT appointments at our home like a missing piece of our family coming to visit!  The sad part is that we need to find a place to transition to when Bryer turns 3.  After all the confidence it took just to switch doctors, I feel that again with trying to find a good fit for therapies. 

To add to my anxiety, her records still read 'Abusive Head Trauma.'  I don't want that title following her for the rest of her life and all through school.  It's like if I were misdiagnosed with AIDS and then they found the real diagnoses.  I wouldn't want every other doctor I see to be skeptical of the AIDS on my medical record, always questioning my future health relating to that.  We've decided that whatever therapy we are led to, this would be a good time for a fresh start.  It's not anything that I am fearful of or hiding from, I just want the next therapists to see Bryer for who she is and the miracle she is in our family - without the stigmatism that comes with a medical record that says 'abused.'

When we made the move, I researched all the nearby school districts for a good fit for our family.  I am so happy with the schools for my older kids, but it's just not sitting well with me to start preschool there in  5 months.  None of our other kids have gone to preschool, with the exception of Piper when Health and Welfare suggested she go to preschool for a couple months. 

My prayers are that we will be led to the next step that will be the very best for Bryer.  I have never wanted any of our kids to go without because we chose to have a big family.  I work hard to help them find their niche, their natural born talents, their God-given abilities.  Bryer is no different. 

We also have to make another big decision.  One that no parent ever wants to make for their child.  We need to choose a wheelchair.  Even writing that "We need to choose a wheelchair," plants denial again.  Part of me wants to carry her around forever.  She has to work so much harder to sit up and adjust to my movement if I'm holding her.  I want her to be attentive and curious about the world around her.  I want her to see the things I see and be 'in the action' cooking dinner with us, dancing with me, going down all the slides and swings at the park, whatever any other 2 1/2 year old would love to do.  On the other side, my body physically aches.  There are nights I can't sleep because my back hurts from carrying her around all day.  My arms and shoulders are trying to keep up to match the demand, but I'm coming to the realization that I can't do this forever.  I don't know why that is so hard for me, but it brings me to tears to have to decide on a wheelchair.  I've put it off and put it off.  I  finally accepted a home visit from a wheelchair rep.  I had a long list of wants and needs that this 'magical chair' was going to have to have to meet for my approval.  Realistically, a chair with this many bells and whistles - well, it's really just back to me carrying her.  There's just no substitution for that.  So I have started whittling down my list to the 'must haves' and 'would be nice' features. 

 
July 2013
We went on a Pioneer Trek with another family.  11 miles in 3 days with 10 kids, and a pregnant mom (not me!).  Some well-meaning family suggested we leave Bryer home.  Not a chance!  She's part of our family and was along for the ride and added another whole dynamic to our trek, riding along in the wagon as a (mostly) happy camper! 


 
 
 
 

August 2013
I was talking with another Mom with a special needs child and she mentioned a preschool program where the children are one-on-one with a therapist the whole time.  I have started researching this program and putting together my list of questions.  They're gonna have to be impressively good to replace our current OT! 

*****

Today we were out at the grocery store.  A lady stopped us and commented on Bryer's curls.  It wasn't the first time.  In fact, it's come to be a nearly daily occurrence.  Still, I oddly still don't know what to say.  "Thank you," always flows off my lips in reaction to the compliment, but then this lady stood waiting for something more.  A conversation about Bryer?  By the look on her face, I could tell she was curious about what was 'wrong' with Bryer.  After all, she's 2 and is working hard to sit in a cart without support for her legs.  The seatbelt holds her up for the most part, and I usually try to find a watermelon or big bag of chips to prop her up on each side.  It's definite progress, but she's not the little girl trying to squirm her way out of the cart like other 2 year olds I have shopped with. 

After an odd silence, I explained that Bryer has cerebral palsy.  The lady was honest and sincere and apologized for not being familiar with that term.  I explained that there's an interruption between the messages the brain sends to tell the muscles what to do.  She seemed satisfied with that response.  But as I walked away, I felt deflated.  All she saw was this little girl with cute curls with very little control over her own body.  I wanted to turn my cart around to go back in and tell her what a blessing Bryer is to us, how much she has overcome, how she understands much more of what we say than what she can express back to us.  I wanted to tell this lady about how the doctors told us Bryer may be a vegetable for the rest of her life and how she is so far from that! 

I still struggle with what to say when people comment on Bryer's curls.  I love that her curls act as a magnet for conversation!  I just never know how much people want to know.  If someone commented on one of my other kids, I wouldn't say, "Oh yes, but you should see how messy they keep their room and how awful they are at such-and-such."  I want to talk about Bryer's positives and miracles.  I suppose it's human nature to want to know what's 'wrong' with someone.  The way we see it is that if God meant Bryer to be a perfectly formed, squirmy, curly haired girl trying to get out of the grocery cart, then maybe He would have gifted us with that miracle a long time ago.  Now I usually answer a curly-hair compliment with "Thank you.  She's our little angel girl!"  If they want to know more, I have gotten good at reading it on their face. 



Sept. 13, 2013
We went to court this week.  Jason and I got there early, feeling confident, and waited outside the courtroom for our attorney to get there.  This would be considered our pre-trial conference to make sure all the details are worked out just before they start the jury selection process.  As soon as we saw our attorney come around the corner, I knew something was off.  He's a sure, steady man that doesn't show much emotion, but something about his appearance told me something was wrong.  After hellos and handshakes and making sure we were outside the right courtroom, he opened the folder for our case.  He pulled out a photocopy of a newspaper article and handed it to me to read while Jason read over my shoulder.  It basically said that the neurosurgeon we were planning to use as our expert witness had misrepresented himself in a different court case.  My attorney could probably see the confusion on my face.  He explained that the prosecutor gave him this information earlier this week and it puts a big hole in our case that our expert is deemed unreliable in the court system.   

My heart sank.  My confidence floated away.  What in the world does this mean?  Have I spent too much time putting my faith in a human that can make mistakes? 

*****
After a visit with our attorney today, as well as another attorney he brought in as a second opinion, our options are out on the table.  Both attorneys agreed that the neurosurgeon's testimony along with a pediatric radiologist, we had a fairly strong case.  The 2 attorneys said today that if we can find anyone comparable (in less than a month), our odds at winning are 50/50.  It really is up to the jury and how well we are represented. 

Enough to make me 'grrrrrrr' in frustration.  So, I have to gather myself and look at the positives.  It's the only way to survive it!  It is a blessing the way we found out about our expert witness.  The prosecution was 'digging up dirt' and found that this neurosurgeon wasn't credible as of April of this year.  She sent the article to our attorney. 

She really didn't have to do that.  She could have waited until he was on the stand during trial and then slaughtered him.  She would have torn apart his credibility right there in the middle of it all! 
 
Right now we have 3 options. 
 
1 - Go forward with the trial.  Pray and prepare to go to battle to keep our family together.  If they find me not guilty then I am acquitted of all charges.  End of story. 
 
2 - Go forward with the trial.  Pray and prepare to go to battle to keep our family together.  If they find me guilty, I could serve a minimum prison sentence of 90 days. up to 20 years, depending on the judge.  There would also be very hefty fines associated and a felony on my record for life.  Also, in the event that I'm found guilty, they would immediately impose a No Contact Order, meaning I can't see or talk to my own children for an undetermined amount of time. 
 
3 - Our attorneys have used the term Alford Plea.  It's a way to maintain my innoscense, but find some common ground with the prosecution.  Our attorneys would go to the prosecuting attorney and talk about a compromise - with wording to the judge such as, "There is a possibility that the jury could find me guilty and I am not willing to put myself in that position for trial."  These are not official options, just possible ones to be discussed...  There is a possibility of a set probation time period and then the case would be closed with a withheld judgment verdict.  There may also be hefty fines associated with this option. 
 
That all said, Heavenly Father prepared us for this trial long before we knew.  He made sure there were safeguards in place for our family, a plan in place, and that we had the support around us we needed.  He has stayed true to his promises and we try to keep an eternal perspective.  We need divine guidance on what decision to make.  If we should we move forward with trial then we need individual(s) to testify on the medical records.  A neurosurgeon or neurologist is our best bet for a replacement.  We know these doctors are busy and it takes time to secure their schedules to testify.  (Afterall, it's taken us nearly 2 years to secure this one!) 
 
Our trial is set to start Oct. 15th and they've allotted 2 weeks to hear all the evidence.  That's 4 short weeks away to find and prepare a new set of experts with literally binders full of evidence - something that has taken us nearly 3 years to put together up to this point.   
 
Jason and I and extended family will be fasting this Sunday, Sept. 15th to help us make a decision between our 3 options, how to find witness(es) we need if that is the answer, and fasting for the jurors hearts to be ready to hear our case if it goes to that.  We've invited anyone who wants to join us in fasting for divine help.  God can see an end to this maze.  We need to trust Him.  We have seen miracles happen through this court trial as a result of fasting. 

*****
 
Everything has been in fast forward for Bryer.  So much that I wonder what God has planned for the rest of this mess.  We made a decision on a wheelchair.  Bright pink.  Foldable.  Spin-able if there's too much sensory overload and she needs to face me instead of facing forward.  Big wheels for going over grass at soccer games.  Umbrella attachment for sunny days.  It tilts back, has solid, un-pop-able tires, quick break locks, adjustable handle to reach Jason's extra tall grip.  It has just about everything on my 'dream list!'  Now the waiting process for it to get here!... 

We also went for a screening to the preschool I called about.  Even after talking to the coordinator and getting most of my questions answered, I thought, "I'll just go through the screening process just so I know what to expect for the next preschool I'm serious about."  I'm not really crazy enough to drive 40 minutes to school every day!...  And then 40 minutes back home. 

We walked into the big room at the preschool.  I was impressed with the therapists and questions they asked and how thorough they were.  They had a big mat out and they got down on her level to play with developmental toys they brought in.  Normally she is serious and snuggles on my shoulder in new situations, but she laughed at them when they made funny sounds and even let them work with her and feel how her body moves!  She was animated and eager to show off.  They put me at ease and encouraged me to be as much a part of her day as I wanted to be, especially during the transition process if she is selected.  I left just wanting to love this place, but still feeling reserved about the long drive time.  They also had a few others coming in for screening and only had one opening to fill, so I didn't want to get my hopes up yet. 

It's a hard decision to make.  Even to hope for.  As I looked at these women's faces before I left, I wondered, "Will they be the ones teaching Bryer so much if I am in prison somewhere?!"  I hushed that thought and decided just to focus on how much I love this place for Bryer! 

Then, I got the call that they have selected Bryer!  She'll be 1-on-1 with either physical therapy, occupational therapy, or speech therapy the whole 3 hour block, 4 days a week.  We are so excited about it that we've given in to driving nearly and hour and a half each day to and from preschool.  Just as I pumped to give her the best of the best, now I'll drive.  I'll try not to think how this is all supposed to work out if I'm not here. 

It's been a sad time to say good-bye to our OT that we love so much!  I'm sure we'll stay in touch, but it's not the same as seeing her every month. 

 The song I have listened to over and over is If I Only Had Today, by Hilary Weeks (Not my video, just a favorite song).... https://www.youtube.com/watch?v=wJIqJyxiyJs

Sunday, July 20, 2014

#31 - Long Awaited Answers! (Journal Entries Through April 22, 2013)

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. 
 
Some strange things have happened this month.  I have met 2 other women that have their kids in foster care.  In all of my life, I have had 2 friends that have been foster care parents.  That was the limit of my understanding of the system.  I have never met anyone else with kids in foster care, and now with my experience with the system, I met 2 families in 1 month.  I try really hard not to be judgmental or ask details.  I don't think that's my place.  I will be there and listen and be able to empathize in a way I never could relate to before.  I know what it feels like to have my baby taken.  To be placed somewhere out there and not know who's caring for her.  I can cry with them, hug them, be a light at the end of the tunnel.  As I have talked with each of these two ladies, I have remembered the details of my dream in jail and only serving my time on the weekends.  I was there, in my dream, to help the other women that were there.  That was my purpose and mission in that dream.  Could it be that He would use me in that way to help these 2 women?  God gives us challenges, helps us pull through, and then expects someone else to be blessed by our experience or expects us to help someone else going through similar circumstances.  Could these two women be the whole purpose of all of this? 

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! 

November 2012
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.
 

Piper with a smoothie mustache and Bryer with a smoothie goatee
More Nov. 2012
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! 

Sunday, July 13, 2014

#30 - Living Like I'm Dying (Journal Entries Through July 2012)

I rested with the kids today (a rare moment for me) and we watched Calliou, a show about the daily adventures of a cartoon 4 year old.  At one point in the show, I found myself just zoning and then tuned in to hear Calliou say, "I'm a plolice man.  I'm going to put you in jail for 100 years because you're a bad guy."  In my gut I felt sick.  I wanted to erase what they had just heard - what I had just heard.  I don't like that my kids think bad people go to jail.  It's something that would have never bothered me before, but it does now.  I am not a bad person.  I have done nothing wrong, yet that's what's staring me in the face. 

Also recently, the Cub Scouts took a tour of the old courthouse in town.  Hunter and Sawyr came home with stories about what it looked like and the freaky jail in the basement.  It's an old building, so it was more like traveling back in time for them.  It wasn't reality in their minds.  The following week they contrasted it with a follow up of the new courthouse.  I prepped them about what it would be like.  They have never seen a courtroom other than the movies.  I explained that when Dad and I go to court, I sit at the table that says Defense.  They were actually excited to see this real place that we go every so often that causes such discussion in our home.  When we go to court, we have family members that come to visit and MaMaw that watches the little kids.  In their 11 and 7 year old way, they know court is a big deal. 

Sawyr isn't old enough to be in scouts yet, but he was intrigued with the fieldtrip and there aren't many scouts in our area, so he tagged along with Hunter and the group.  The boys came home bouncing off the walls and talking a mile a minute, trying to explain everything they had learned.  They told me they saw my chair (to have them refer to it as 'my chair' was a little humbling) and then they sat in it for me for good luck.  I kind of wanted to cry and laugh at the same time.  These poor boys have been exposed to way too much!  After a tour of the courtroom by an officer, they showed them a section of the jail.  If I would have known the jail was part of the tour, I don't know that I would have let them go.  The boys blabbed about how they saw a real inmate in solitary confinement (the kids didn't know he was staged, but a scout leader told me later) and how he looked and acted scary.  Sawyr was as much intrigued as he was freaked out by it all.  The officer leading the tour explained that our county is the best jail to be in, but they didn't want to give the kids the idea that it was a fun place to be.  My boys raved about the free food, computer time, open jail cells, it didn't look too bad - until they added this creepy guy in lockdown to remind them that it was a place they didn't want to come to.  As he was telling me all about it, Hunter said he asked the officer the question, "What happens when people are here that didn't do anything wrong?"  As he told me the question he asked, my heart hurt for him.  This poor 11 year old, expected to be strong, the leader of the kids in his family, was taking his own stand, questioning the officer in the most respectful way.  The officer that was leading the tour is completely aware of our situation and said they have a process through the courts to be able to tell.  That was a good enough answer for Hunter.  If I had not been in the situation I am in, the tour would have been fine.  But as it stands, with me trying to defend myself against that possibility - however impossible it may seem - it's still too real.  Too close to home.  Too much in my boys' heads now.  I feel violated, even if I shouldn't.  I want to go back to our little bubble where people could say whatever they want about us and it just wouldn't matter.  In a court of law, it does matter.  And no matter how innoscent I am, it really is about how well I am represented.

We have decided to move and have made an offer on a house closer to the bigger city where we take Bryer for appointments.  It seems so cut and dry.  We should be able to just pick up and move.  But my heartstrings are tied here.  I love this little town - this place I was so scared to move to just out of college with 2 little kids.  Our business has grown here.  Our family has grown here.  I have grown here.  I love driving down the street in our no-stop-light town and people wave at each other.  I love that people watch out for each other, even if it's gossip-y.  I love that when we check books out at the library, my 3 year old can scribble a W on the card and the librarian knows exactly who that book is checked out to.  I love that (most) people are supportive.  I love the fundraisers that have been done,  the friends that have cried and laughed with us through it all.  So to pick up and leave is not as cut and dry as I would hope.  Heartstrings are hard to cut. 

April 28, 2012
Last week Piper asked in her sweet, patient 5-year-old voice, "How long before Bryer isn't a baby anymore Mom?" The question caught me off guard and I struggled to get out, "I don't know honey." 

Silence.

I turned around from washing dishes to see Piper resting her folded arms and her chin on the front of Bryer's high chair, just watching her little sister.  I found enough courage to leave the dishes and sit down to have a conversation about this subject that's hard for me to understand, let alone her.  Since we still don't know what happened, I am cautious with how I approach it.  I explained that Bryer's brain is what helps her learn new things and tells her body how to move.  Her brain is working different than other kids her age.  Piper had asked months earlier why a boy at church, who is months younger and inches shorter than Bryer, is walking now and Bryer isn't.  I explained the same thing with the brain, not really knowing if that was an acceptable answer for her or not.  It's a lot to understand for a 5 year old. 

In the past week Piper has since asked other questions about brains and messages that our brain sends to our body.  We talked about a man in a wheel chair at church who also has cerebral palsy, but is much more severe than Bryer.  Piper and Walker asked so many questions about his brain - and asked more the next day.  It intrigued them, but I don't know if they understood the connection to Bryer.  He sits in a wheelchair and has uncontrolled arm movements, grunts, and has a feeding tube.  Yet he seems to know enough of what goes on in his world.  His mom has said if his schedule is off, he gets upset with it.  He smiles when I have let my babies pull themselves up on his wheelchair to see him.  There are some similarities, but also lots of differences.  Bryer smiles, she laughs at her siblings, she interacts, eats like a baby, but she's not walking, crawling, or sitting yet.  She's just Bryer to us - she progresses as she does and lots of times we don't question it until we see someone her age that is developmentally on a different path than what she is on.  Then it prompts the questions like "How long before Bryer isn't a baby anymore?" or "When will Bryer sit up by herself?" or "When will Bryer walk?" 

I went back to the scripture that says, "The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame."  Hmmm.  Their proper and perfect frame.  I wonder what that's like for Bryer.  Her brain will perfectly transmit signals to her muscles to tell them when and how to move.  When and how to dance.  When and how to sing.  For that moment, I hope to have a front row seat in Heaven.  I want to be there when her legs dance her way through the pearly gates (or whatever the entrance to Heaven looks like).  I will sit in awe as she is restored to her proper and perfect frame - a proper and perfect way that I may never know her as, in all the time on this earth. 

May 10, 2012
Our house still hasn't closed.  No word from the underwriters.  Frustrating to say the least.  We have heard bits and pieces of info from our expert witness, but he's still going back and forth with the radiologist, so he hasn't given us enough info to go on.  The judge has decided to allow the enhancement to my original charge - carrying a possible 10 years in additional to the maximum 10 years.  20 years in prison.  Do you know what happens to a family in 20 years?!  An August trial is coming too soon.  As I packed and prepared to move to a new place from the only place 4 of my children have ever known, I can't help but wonder about a few things.  Will this new place be he home Jason raises our children without me?  Am I preparing to move to a home I may not be living in 3 months from now?  Am I preparing my children to be more responsible for the event that I am not with them?  Could I possibly be denied this opportunity to raise my own children?  I received a priesthood blessing that said, "Though you will see evil all around you, you will be able to keep it from your family."  As we went through our trial with Health and Welfare, I felt that I really was seeing evil all around me.  We were spared and able to have our kids back.  Now will that evil all around me be jail?  Inmates?  Felony criminals?  Could God spare my children's devine potential and delicate spirits as a trade for me in prison?  As a mother with an eternal perspective, is it worth it?  Really, is it worth it?  If God made a deal with me and asked if I would give up my life for my children to be protected, would I do it?  Where I sit today, I say Absolutely!  If I can come full circle and ask that His will be done and fully know that He has my best interest and my family's best interest at heart, then I will try my best not to question it.  In the meantime, the home we have picked out has a full basement apartment.  Our thought is that if I'm not here then we may need family to move in to help Jason. 

I hope for the best and have faith, but I have to prepare for the worst in this temporal brain of mine.  After all, the scriptures say, "If ye are prepared, ye shall not fear."  Last week I ordered a special journal with a picture of Jason and I on the front so I could write little notes to him in the next few months of things I admire and appreciate about him.  Court is coming in August.  If after August, I am not here with my family, then he will need something to carry him.  He will need to know that I appreciate when he gets up with Bryer in the middle of the night, or helps me clean up throw up when one of the kids are sick.  He will need to know all those quirks that I love about him and cherish.  He will need to know that I love when he helps with the dishes or folds the laundry with me.  He will need to know he is fulfilling a divine responsibility in providing for our family.  He will need to know how much his touch means to me.  It will be a happy day if I can sit down with him at the end of August and read the things to him aloud, in person.  Otherwise, it will be something to buoy him up when he needs some nudging and help from me if I am not here.  Successful marriages do not just happen.  We have to work and appreciate each other and grow together and be supportive.  This journal is my way of doing that if I'm not here. 


*****

As I fixed Piper's hair this morning, she whined that it hurt.  And the words came out of my mouth, "What are you going to do if Dad has to do your hair?"  She quieted down, I'm sure thinking that was the most absurd thought of me to have.  And I did too.  I am her Mom.  I am the one to do her hair, fix her breakfast, teach her to read, encourage her craft ideas, point out when she feels the Holy Ghost, sing with her, teach her how to jump rope, cook dinner side by side with her.  And a million other things.  But I just read another news article where someone was convicted of hurting their baby.  Same 3 triad of symptoms.  It's maddening.  How can person after person be convicted when, in fact, some of them are innocent?  By going headstrong into trial, I feel like I'm preparing for my death, my life as I know it. 

*****
I have checked one of those 'Bucket List' things off my list.  It arrived in the mail today!  All my adult married life, I have had our extended family pictures on my wall.  It consisted of Jason's family - matchy-matchy, the ones who make it a priority to all be together for holidays, and monthly family nights.  The picture, all 27 of us, is updated every year without fail. 

All these years, next to that picture on the wall was not just one picture of my family, but two.  A constant reminder that I come from a divorced home.  Never a picture with both my Mom, Dad, and Step-Mom in the same picture.  Never a Christmas party where every person of my family gathers, never a monthly family night like the Hansens have, never a whole, big, happy family picture...  Until now.  Because this sweet baby girl has entered our lives and turned us upside down and made us all work together....  Today in the mail, arrived a picture of my WHOLE family in one 8x10! 

Yes, maybe we are 'Slytly Dissfunkshunal,' but we are together.  In one piece.  Or at least one picture.  Since this all started, there have even been family gatherings and meetings that every person from my family is in the same room.  Who knew a sweet baby girl could work such miracles?! 

*****

This past few weeks we have been able to do so many fun things.  Things we meant to do sooner, or have been in the back of my mind, but until we had planned to move, were just not a priority.  I feel like I am living in the last months before a death.  You know those people that go sky diving and travel to foreign lands and see the sights?  My version is a picnic with other moms and kids, having friends over to lunch, starting a workout plan, eating healthier, impromptu cookies and breads baked by my kids, walks and bike rides with only 1 kid at a time.  It's those essential relationships that get my time and energy.  I don't want there to be any doubt in my kids minds or Jason's of how I feel about them.  And yet I'm forced to prepare things in my home in the event that I am not there - getting my baby girl to go to sleep on her own instead of nursing to go to sleep.  Teaching my kids to wash dishes and make bread and be responsible for their own things.  I am finding a way to dance in the rain and prepare my kids for the storm.  These are things that would be taught anyway, but it's now a necessity, not just a learning process as it happens.  I laid in bed last night awake thinking.  And I laid there long enough that Bryer woke up so I brought her to bed with me and nursed her back to sleep.  I felt comforted in that.  It was something that couldn't be taken away from me in that moment.  I suppose it's a reason why I have held to nursing so long.  We worked so hard at it while we were separated and it's created such a bond.  Maybe it's not just that she can't drink enough from a cup yet.  I'm not ready to let go and risk losing her again.  Risk losing my family.  So somehow mentally I feel that if I keep nursing, they can't take them from me again.

I know I shouldn't worry about Jason with the kids if I am not here.  But I do.  He's a wonderful Dad!  He loves nothing more to come home after work and wrestle and play and sing and dance with them. But that's after traveling to our other offices all day and coming home to refresh himself after a long day.  Being with them all day long and conquering all the battles that come up in a day - clogged toilet, water mess, arguing, lost toy, missing piece, broken doll, 'he took my...', 'she touched me....', then it's not so refreshing by 5:00.  May the Lord know what He's doing!   

Bryer's Progress Notes:
Bryer's progress in the past few weeks has been amazing.  She is holding her own cup with assistance now, and we are teaching her how to put it down when she's done, rather than just letting go of it.  It's easier if she's on my lap to practice.  She's also good with eating a variety of textures now.  Once in a while she'll spit something out, but rarely does she gag anymore!  Amazing little miracles that I would never have thought would be a big deal.  (I actually texted her OT when I successfully fed Bryer taco soup - the corn, meat, broth all mixed together was something she would have choked on before!)  She also seems so much more social and her eye therapist has noticed the same thing.  She pulls back when someone is too close or about to take a toy from her.  She searches for a face to look at, not just the body of the person walking into a room.  She understands and reacts to words like outside, shower, kisses, and up.  She started waving bye-bye last week.  First at her eating therapist, and now to almost anyone we prompt her with.  She was casted for her foot braces today so they can make a mold from it and specialize it for her.  The braces will help stretch out her heel cords so she can stand better.  She is an amazing little girl.  I am so blessed to be her Mom!

May 13, 2012 - Mother's Day
I look at my kids differently now.  I struggle between wanting a clean house, which includes training my children to take responsibility for it, and the probability of argueing with them over chores; and just wanting to enjoy them and spend fun time with them while the opprotunity is here.  Today the fun won out. 

After lunch, I looked around at the kitchen.  How nice would it be for my boys to take charge and make it all go away?  And then the fun gave in and we decided on playing Settlers of Catan instead.  After Bryer woke up, we went outside so I wouldn't have to look at the mess.  As I sat there in a folding camp chair, I turned on Hilary Weeks, "Stand Still," and the emotions got to me again.  The song is all about how kids just grow up too fast and how I should just enjoy them while they are little.   

As if in a movie, slow motion, I watched each of my children's personalities unfold as they played in the water.  And the haunting thought hit me again, "What if I am not here next Mother's Day?" I watched Hunter, with his engineer-minded brain, create a 2 story spout of water flowing from the hose secured up high.  Sawyr controlled the flow of water at the spicket, turning it up and down to hit the inclined board just right to send the water cascadeing down into a mud hole.  He is my cautious one who likes to be in control - running the spicket and making sure not to get wet himself were right up his alley.  Piper let loose and actually splashed and played in the mud - something she hasn't been willing to do before.  She admitted it was on accident that she fell in, but decided she liked it, as with most things that are new to her.  I counted it as a blessing to be able to witness a small miracle.  Walker, with his trademark, pure, reckless abandon, played joyfully in the mud hole and then shivered in his cold clothes afterward.  I peeled back the blanket that draped over me as I fed Bryer the best of the best I can give her.  She pulled off and smiled at me.  As as my slow motion movie came to a close, I basked in my children's laughter.  The song echoed in my head, "If time stood still...."  Just what I needed to hear, while my dishes sit in the sink and I watch them build a hose fountain down into a mud pit to play in.

May 2012
After all the 'hurry up and wait' paperwork to go through, we closed on our new house!  The month of May has been filled with boxes and bubble wrap and tape guns.  It's also been filled with tears for leaving friends and giggles for our new house and a million other emotions on opposite extremes. 

Our first Sunday at church, I felt like I was a middle school girl again.  Will they like us?  Will I make friends?  Will my kids make friends?  Going from a congregation of 50 to over 150 was a big leap - for our whole family.  Will they even notice that we're there? 

We had exactly 11 days of trying to settle in before I went to my first Relief Society monthly get together, an evening just for the women.  I sat at a dinner table with women that were actually about my own age - a change from our older congregation.  They had kids similar ages and talked about schools and sports and community activities.  They filled me in on the transitions happening between school and summer break.  And then... they invited me to play basketball with them later that night.  Great!  Other women who play!  (I guess they like me?!)  I was ecstatic!  I have tried to stay in shape running, but having a purpose to run up and down a court is more of my style! 

I made it home and managed to dig through enough moving boxes to find my basketball shorts, a t-shirt, and tennis shoes.   I went back to the church and was surprised at how easy it felt to fall back into the workout routine. 

Toward the end, we decided to play 'just one more game.'  I should have known.  Toward the end of the 'one more game,' I stepped forward to make a pass.  As I pushed off my back leg, I felt a brick hit the back of my leg, an internal pop, and I went down.  I looked around, fully expecting to see a brick or at least a loose ball or something that had hit me.  My leg felt funny and I tried to get up, embarrassed at falling on my night to make friends.  My leg gave out and I couldn't stand.  I remember saying, "Just scoot me off the court, it'll just take me a minute."  They didn't buy it.  When I was ready they helped me out to a car and a friend took me to her house to be inspected by her husband, a doctor.  He confirmed by 1 squeeze that my Achilles tendon running up the back of my calf was no longer in one piece.  Kneeling on the car seat in an awkward position, he asked me to point my toe.  I did.  He said, "Go ahead, point your toe."  But I was pointing my toe... until I looked and my foot hung, no pointed toe at all.  After a knee surgery in high school, I knew too well that this was no good. 

Surgery was 2 weeks later, followed by a cast for 6 weeks.  My kids had fun 'decorating' my leg for surgery so the doctor would know which one NOT to cut open - complete with a message to the doctor written, "Do not hurt her." 




No walking, no bearing weight, but more importantly - no lifting Bryer. 

I didn't journal much during this time, so I'll tell in my own current words the miracles that happened...
I should have realized by this point that the Lord works in mysterious ways.  This was His way of introducing me into our new community.  A girl was hired to help me for the summer, as I hobbled along on my knee scooter.  She became a great friend of ours and was patient with me as I tried to teach her how to do my job.  In turn, I got to relay my feelings to her of her worth and have great gospel discussions with her.  She met her future husband while she served our family, after I encouraged her to attend a church activity that she was less than excited to go to. 




My mom also had foot surgery, so we had time to sit together and laugh at what a pathetic sight we were.  Bryer recieved her foot braces about the same time, so we had 3 generations in 'boots.'  There were many days of just sitting out on the lawn and watching our kids play in the water, filling up every square foot of our yard with their giggles.  It was too easy to just cry and ask, "How much can one family take?"  But I remember how depressed I felt in not being able to do my job, it was those giggles that carried me and helped me be happy in the midst of our trials.  It gave me an 'excuse' to just sit and watch them in action - in a way that would never be the same again.  To savor every moment.  And forget what grown-up problems I have. 



One lady from church (who tried her very best to remain anonymous) arranged for a month of freezer meals with help of others at church.  In the scriptures it talks about how Christ blessed the five loaves of bread and two fish.  He used it to feed a multitude of people that had gathered to hear Him teach.  He fed over 5000 people with those five loaves and two fish - and still had some left over!  What happened in my freezer was a modern day version.  We counted the meals and tried to plan out.  Those meals that should have lasted a month lasted us three months! 

Another way the Lord blessed us was by getting to know individual families.  It would have been easy to slip in during our move and just blend in, take our spot.  But the Lord knew we still needed help through this trial, even if we would have rather been prideful enough to just take it all on ourselves.  Recovering after surgery gave others an opportunity to stop by and talk, get to know our family, ask questions, and yet again - learn enough about us to be willing to bear our burdens with us.  I had worried about how to tell my new friends that I would be on trial for child abuse.  I would completely understand if they weren't supportive.  But these conversations happened so naturally as people stopped by, brought cookies, came to check in, help with our kids.  I just had to sit and visit. 

There were rough days of not being able to do my job.  Getting Bryer downstairs to her highchair in the morning proved to be impossible without help.  The simplest things like getting her to/from appointments, moving her to the floor to play, even preparing her food took me twice as long.  It made me even more frustrated, thinking that my time was so limited as it was - and now I couldn't even do the simple things a Mom is supposed to do. 

July 2012
I have spent most of this year in preparation.  It's not fun, but a necessity.  I must prepare for the worst and hope for the best.  I am trying my best to prepare my children in the event that I'm not here.  They will need skills to carry them - carry this family - without a mother.  Would it be easier if I were to die and Jason could marry someone else?  A horrible thought, but it's almost worse to have a mother there, that's not really there.  There seems to a line in my mind that's getting more and more clear.  The line is between those things that are temporal (that we can't carry with us after this life) and the eternal (those lasting things).  As much as the world would teach us the things that are important, those things just aren't.  When time is limited, priorities take care of themselves.  We can't take 'toys' with us to the next life, a nice home, even the hobbies we enjoy.  What we can take is what we've learned - what's in our minds - the relationships that we have built - our relationship with God.  With this in mind, I'm trying to instill a routine of scripture study, of chores, family prayer, the essential things that will carry my family if I'm not here.  I turn my wheels with How do I prepare food months in advance?  How do I teach them to run a household of 7 - oh wait - 6 - without being told what to do?  Routines... Homework... The important gospel learning... They are not getting it.  I don't want to sit down with them and tell them my plan of attack.  They are 5 kids, all 11 and under.  They shouldn't have to learn how to be grown ups.  Is this all for not?  What is Hevenly Father's plan for our family?  This is a righteous desire I have - to stay here - in my home - and raise my family.  I have never felt this before - to be so desperate and heartbroken to want something so bad and I don't know if He will honor my desire.  I do believe He makes up 10 fold for each tear we shed.  Could He promise me my children in the eternities?  Could He ensure they grow up to be productive, healthy, good citizens in the community, protected, and active in church?  Ultimately that's what I hope for.  If it takes me being 'gone' for that to come to pass, is it worth it?  I always thought I would be the one to teach them all of that.  Could I be content with God's Plan if it doesn't work out how I hope it will?  Could I just be limited in my sight of what's to come? 

We have learned about 'switches' for Bryer to use.  For this one, she can turn the mixer on and off to help make cookies with me.  She's learning about cause/effect and being a part of the action! 

Sunday, July 6, 2014

#29 - He Carries Me (Journal Entries Through April 2012)

I got one of 'those looks' today.  When we are out, I'm used to comments like, "Boy you have your hands full." or "Are they all yours?" or "Don't you know what causes that?"  Normally I have a witty comeback and can shrug it off.  Today we were meeting my mom at the mall.  Bryer got hungry.  She does ok in her own chair at home to eat, but if we throw in a strange place with strange sounds and unfamiliar textures and flavors, she gets distracted and crabby and irritable.  It's too much to concentrate on, no matter how hungry she is.  We're also trying all different kinds of sippy cups, regular cups, anything that will get her little lips to engage in drinking.  I've tried it slow motion, just to help me understand.  I bring the cup up to my lips.  At the sight of the cup my lips start to pucker.  My lower lip makes a shelf for the cup to sit on, I curve the edges of my mouth around the sides of the cup so no liquid spills out, then I have to tip the cup just right so enough liquid comes out, but not too much.  I have to know how to get the water down my throat and not just swash around in my mouth, and alternate my swallow and breathing.  No wonder Bryer would just rather nurse!  I have been all for giving her the 'best of the best,' but at 16 months, I'm ready for her to be able to get liquids in any other way.  We have not been successful at all.  So, as she started to get hungry, I ducked into a women's restroom with my 3 littlest ones.  I found an uncomfortable chair in the corner and tried to be subtle as I got Bryer going.  To keep my other 2 distracted from touching things in the germy public bathroom, we made faces in the mirrors and played Eye Spy.  Then an older lady came in - her hair perfectly fluffed, her spotless clothes, and proper purse over her shoulder.  She saw Bryer's long body hanging out of the end of the blanket and I got 'The Look.'  It was obvious that she felt Bryer was way to big to be nursing under the blanket.  The sad thing is, I kind of wanted to agree.  I have not nursed any of my other babies this long.  We are trying so hard to help Bryer, but in the meantime, this is our go-to.  It's working for now, as we try to find the next step with her.  I am trying hard, I really am.  The lady in the restroom couldn't tell that Bryer has special needs or what we have been through to keep her nursing in the beginning or how hard we are trying for a single drink from a cup.  All she saw was a baby too big to be under a blanket.  A moment in time - a weakness to pass judgment. 

Being on this side of these 'looks,' my heart has softened in the judgments I never knew I had.  I am more likely to give people the benefit of the doubt.  They are probably having a bad day; they just lost a spouse; they are running late; I'll give them any excuse in the book and have compassion for them.  I see people with struggles.  Real life, mind-changing, life-altering struggles.  So when someone cuts me off on the freeway, maybe they are trying to get to the hospital.  If a clerk is short with me, maybe she would rather be home with her kids, or is tending to a sick parent.  If someone at church looks like they have it all together, maybe it took an extra amount of effort to pull it all together just to be there.  I just never know what people are going through, what they are hoping for, what they are working through.  There are many, many ways to be a good woman and mom.  Some choose to have kids, some don't.  Some nurse, some pump, some use formula.  Some co-sleep, some let their babies cry it out, some stay at home while others work.  I never would have understood how much time, effort, and heartache it takes to make this single decision to continue nursing until I have been through it.  There are a million choices we make each day.  Who am I to say that the choice I make for my family is the same choice someone else should make?  We all make decisions based on our past experience and the knowledge we carry with us right now at this point in time.  I am in no way capable of thinking my choice is the right one for any other person.  That was my ah-ha moment for the day, and something I hope I will never forget! 

I left the women's bathroom with my three kids in tow and I took more notice of the people around me...  The mom with the fussy baby, the toddler throwing a temper tantrum, the guy with all kinds of piercings and tattoos on his face, the elderly single man sitting on the bench.  They all have a story.  Every. Single. One of them.  Each, a child of God.  Each overcoming obstacles at their own level with their past experiences and knowledge that makes up only them.  The least I can do is to be kind.  Be soft.  Be compassionate.  It's when I start getting 'me-centered' that I miss the whole point of where and why I'm here. 

On the same token, as we stood in line at the grocery store today, a woman behind me started making conversation with my kids and mentioned, "I can tell that your Mom sure loves you!"  My eyes got a little misty.  This lady had no idea that I will soon be on trial, defending myself from false allegations of hurting my baby.  This woman that I am, loving my kids so much, may all be taken away from me.  I am just a normal, every day Mom, being asked by the Lord to conquer this huge mountain that stands in front of me.  Everyone has a story.  Everyone. 
Piper and I feeding our babies in their highchairs
*****

Our last court appearance was in preparation to see if we were on track for our jury trial.  Sometimes it just hits me like a ton of bricks.  This isn't a Law and Order or a nightmare I can wake up from.  This is my life.  My family on the line.  It's as real as me walking to the front of a court room to sit behind a table labeled 'Defense.'  It's responding to "All rise," and standing when the judge walks into the courtroom, just like on TV.  It's the moments that I answer a question from the judge with "Yes, your honor."  It's getting dressed up each time, sending my kids off to school and hoping that at the end of court they won't arrest me and I can return to my family.  It's carrying on with my everyday life, despite the pressure that the legal side carries - being completely upheld by the prayers of other people. 

In court the prosecution asked to add an enhancement to the original charge.  The judge hasn't decided if he will allow it, but if he does, it would carry an additional 10 years incarceration - for a total of 20 years.  Our attorney didn't see how he would allow it, as it's similar wording as the original charge, so they shouldn't be able to duplicate it for an enhancement. 

There has also been talk of a change of venue, as the prosecution doesn't feel I will receive a 'fair trial' in our town because I have too much support.  She brought in examples - the donation cans that sat at the gas stations and grocery store checkout stands in town, the 'prominent figures' she said Jason and I are, and the fundraisers that have been done for us.  Between helping at the school regularly and doing story time at the library I have friends.  Is that a bad thing?  Jason is the bishop of our church congregation and sits on the Board for Planning and Zoning and we have both coached high school sports teams.  We own a business in town.  People know us - not in a show-y, 'look at me' kind of way, but we like to be involved, and now the prosecution is trying to use that against us and asked that the judge consider the change of venue for the trial to be held in a different county.  I will admit, in a small town and small county, it will be hard to select jurors that either don't know Jason and I or who haven't heard something.  It's a small town.  People talk - good or bad.  Our attorney has pointed out to the judge that there are other towns in our county to choose jurors from.  The judge isn't ready to make a decision yet either way.  What the judge did say is that he sat down to lunch at one of our restaurants after court the last time and some people at the table next to him started talking about our case.  To be completely unbiased, the judge got up and left.  I can appreciate that about him.

From our side of things, we've been back and forth with our expert witness, the neurosurgeon from Maryland.  He is still in the process of reviewing our binders of information and said he would like to call in a radiologist to advise him specifically about the skull fracture.  He's worked with this radiologist in the past and is the lead pediatric radiologist at Stanford.  As we wait to hear back some definite answers from our experts,  it's a little overwhelming that doctors with their kind of credentials would come to our lil ol' town to testify.   

In the meantime, I take more pictures of my kids doing everyday things.  I need to capture these images in my mind and soak it all up.  You just don't get these days back once they are gone. 


March 13, 2012

I lay in bed last night.  Worried.  Confused.  Overwhelmed.  Most days I am able to carry on as usual, but all these feelings just seem to catch up to me every so often.  I have learned to just let them come, cry, and get over it.  It shows that this is not easy.  It was not meant to be easy.  There would be something wrong if it were easy.  Bryer's recovery, therapy, appointments, and everyday needs would be a 24 hour job.  Then I have a curious-about-everything 3 year old, a 5 year old wanting to learn to read, and an easy going 11 year old that could easily just slip through the cracks if I didn't make a conscience effort to make a connection with him everyday.  He and his brother would be happy to play the Wii everyday after school if I would let them.  I want to visit with them about the day, play, enjoy each other, soak them up.  Every so often, there's a day that ends in bedtime before I get to visit, and by then I'm so ready for quiet that I feel guilty that I didn't have a meaningful 1-on-1 conversation with them. 

Don't worry - I didn't forget my 7 year old.  In fact, that's what tipped off my night and I ended in tears.  On Saturday, Sawyr asked for the library book to teach him to tie his shoes.  My plan was to sit in the back seat with him on our long road trip and help him but I hadn't had meaningful conversation with Jason in so long that I delegated the shoe-tying-lesson to Hunter for now.  I physically pulled out my phone "memo board" and put it on my To Do list:  teach S to tie his shoes. 

Sunday I walked past as Sawyr sat on the bottom stair.  He tried and tried to tie his shoes.  This is after seeing his sister (2 years younger than he is) tie a big bow on her skirt the day before.  I silently spied on him as he gave up and stuffed the ends of his shoe laces into the sides of his shoes and finished getting ready to leave for church.  I mentally took note and assured myself that that would be the day, after church, that I teach him to tie his shoes.  After all, he is 7.  First grade.  It's time he learned to tie his shoes. 

Monday night I layed in bed.  Worried. Confused. Overwhelmed.  And then the vision of my little boy sitting on the bottom step trying so intently to tie his shoes flashed through my head again.  And I realized I had let 2 more days go by without teaching him to tie his shoes.  Such a simple thing, but something that matters to him.  And if it matters to him, then it matters to me, and it matters to Heavenly Father.  I prayed for yet more dilegence in being a Mom and having the time, energy, and patience that I need to fulfill everyone's needs.

I woke up with parts of the Hilary Weeks song He'll Carry You playing in my head, so I had to go find the CD and listen. 




*****

Jason and I lay in bed last night.  Bryer's been sick, so finally to lay next to each other without a baby in between was nice.  No coughing baby.  No fever.  No child in between us.  It was a calm moment to just BE.  To just think.  To just lay next to each other in silence.  I took a deep releasing breath.  And then Jason said the words I had been thinking, "What have we gotten ourselves into?" 

A reassuring conversation followed of the gospel and the plan of salvation and the eternal scheme of things.  I said, "Sometimes I just want to move away and leave all our problems."  He assured me that our problems would come with us, but that moving maybe would relieve a lot of other problems - travel time, doctors being so far away, having the help of family, etc.  We have tossed around the idea of moving closer to the bigger city where we take Bryer for appointments, more therapy options, more activities for our older kids.  It breaks my heart to think of leaving this little town with all the support we have received.  I love knowing my kids friends and their families, being involved, having leadership opportunities.  We have decided to pray about this decision and where the Lord would have us be. 

Sometimes I think about what our life was like after Bryer was born.  I remember laying in bed on another night next to Jason and I said, "I thought 5 kids was going to be harder than this."  I remember that question like it was yesterday.  It was the calm before the storm.  All our faith and knowledge and understanding and learning and progress had prepared us and led us up to that point.  Heavenly Father knew we were ready.  Ready for a challenge.  The biggest challenge we would yet survive together.  I think about some of the smaller tests we must have passed along the way - letting our hearts mourn through three miscarriages was a hard one.  Then the thought of our good friend with special needs came to mind.  When Jason and I were new parents, I was given an assignment to help this woman at church.  She lived alone and had help to balance her checkbook and pay her bills and someone taught her to clean her house and cook for herself.   We took her with us every week to the library, grocery shopping, the bank, whatever errands she needed to run. We surprised her by taking her along to a few of Jason's college basketball games.  I was released from that official responsibility, but what had started as an assignment had turned into a wonderful friendship.  Did I pass that test too well?  So well that God thought I was ready for a child with special needs of my very own?!  Lucky enough to have that influence not just once a week, but every hour of every day?  Did He take into account the knowledge of child development we had practiced all along the way, the sign language we taught our other kids, the patience it would take to raise this special little girl?  Yes, I think He knew.  More than I ever imagined.  And He has more confidence in me than I often have in myself.   

I compare the 2 comments in my head, just a year and a 1/2 difference in time.... "I thought 5 kids was going to be harder than this..." and then "What have we gotten ourselves into?"  So much growth, humility, understanding, and spirituality between those 2 comments.  I wouldn't have raised my hand and said, "Pick me!  I'll take on that challenge!" (Or maybe I did before I came to this earth?)  Either way, I wouldn't trade it for anything. 


April 5, 2012

We have been traveling 2 hours at the beginning of the week to do hyperbaric chamber appointments with Bryer.  This week we stayed with Jason's brother and his wife.  I had another "mourning time" today as I watched Walker run around on the back patio, shooting bubbles out of the bubble gun.  His younger cousin ran around chasing the bubbles and loving Walker.  As I held Bryer, her head resting on my shoulder, I felt sad that she wasn't out there running and catching bubbles with them, giggling.  At home she uses her vision, but when we are away lots of times it's easier to use her hearing, so she looks like she's tuned out, but she's just listening and soaking everything up.  She had her head rested on my shoulder so she could concentrate on all the sounds of the kids, not worrying about using her body to sit up or use her vision.  Someday she will be made whole again.  After this life, when she isn't tied down with tight muscles and eyes that don't see like ours do, she will run and chase and play with the best of them.  Until then, I will hold her and love her into that day.  And then I will appreciate it so much more than if I had experienced it today. 

April 16, 2012

 
Saw the eye dr. today.  He was impressed right off the bat when Bryer picked up on him coming in the room, then tracked him side to side as he wheeled his chair around to check her out.  She is tracking lots better than she was 4 months ago and they didn't have to use any sound-makers to get her to attend to what they wanted her to look at.  Lights, yes.  Sound, no.  That's a good sign that she's relying more on her vision than just sound like she was.  She did good on the cards too.  She saw better in both eyes - 1 card better actually.  Last time we went, she stayed the same in her left eye. 

4 months ago:
right eye - 20/470
left eye - 20/710

Today:
right eye - 20/380
left eye - 20/470

Good news at the eye doctor today, and a little girl wanting to stand after many trips to the hyperbaric chamber! 
We also had a benefit yard sale this weekend for Bryer.  We had about 18 people donate 'stuff'.  Big stuff, little stuff, lots and lots of clothes, good stuff, couches, furniture, entertainment centers, a grandfather clock, shelves, etc. etc. etc.  We made right about $4000!  Amazing.  1 lady made 24 loaves of bread to donate to sell - which sold out fast, so she made more by the next morning!  A few people asked about Bryer and wanted to know about her situation, so I try to explain cerebral palsy, as the messages from her brain to her muscles and from her muscles to her brain send different messages than ours do, so she has tight muscles and her brain doesn't tell her body how to move, crawl, roll, or walk.  The words 'Cerebral Palsy' still look strange in writing.  I never thought this was in my future.




When the sale was all over and done, Jason and I talked about the money.  Here it sits.  I so bad want to do more for Bryer.  But the fact of the matter, Jason pointed out, is that if I am not here to care for her, then all the therapy options in the world won't help her.  I am reluctant to put that money toward more attorney fees.  It feels selfish.  I don't want all this money to be dumped into keeping me out of jail when our little girl could use it.  It hurts to know that we have a chunk of money that we could use to help Bryer, but feel that defending me is the best way to spend our blessing.  There have been tears and anxiety since the sale, trying to decide what to do with this money.  I have to accept that the Lord will help us make this decision however we are to spend this money. 


March 14, 2012 - HBOT

We have completed 24 sessions of hyperbaric oxygen therapy (HBOT) that our friends and family had bought through Living Social for Bryer...  We prayed about a way to make it happen and God sent us the answer and made it possible.  The staff at the office was the very best.  Bryer and I climbed into a long, white container that looked like a large duffle bag, and lay side by side.  They gave us a walkie talkie to communicate with them while we were in it.  They sealed it shut and it began pressurizing, with our ears popping similar to going up in an airplane.  Bryer had a nose tube that delivered 100% oxygen - a much higher percentage than the 20% that we breath with our normal air.  Plus it's at a pressurized rate, so it's supposed to force the oxygen into the cells more efficiently and create changes in her brain.  If we stop breathing, our brain is the first thing to be affected, so it's thought that our brain is the first to also benefit from the pressurized oxygen. 

The following is my report to the doctor after we had completed all 24 sessions: 
 
Our baby has been diagnosed with cerebral palsy.  She is very fussy most days and the only way to get her to calm is to breastfeed.  She is sensitive to changes in light, sounds, smells, and temperature.  Besides her regular therapies for her disability, she also gets constipated extremely easy.  Her gastroenterologist has her on Milk of Magnesium twice a day, 1 teaspoon in the morning and 1 in the evening.  Her sleep is erratic and we can’t seem to find a schedule that works for her without nursing often to calm her back down. 
Then we started hyperbaric oxygen therapy.  It was a comfortable fit for me and my 17 month old to lie side by side.  We would let pressure build, similar to going up in an airplane, and see how far she would let it go before fussing to be nursed, which helped to unplug her ears with the increased pressure.  She usually goes to sleep next to me and often we both have a short nap while in the chamber.  We tried an oxygen mask with her, but she wouldn’t keep it on, so we use a tube that blows oxygen and hold it as close to her nose as we can while she nurses so I know she is getting all the oxygen through her nose. 

1st week - (4 treatments) We saw our first signs of improvement.  She began pooping without having to use the Milk of Magnesium.  I am with her in the chamber, and although I don’t get direct oxygen as she does, I have noticed a difference in my muscles just by being in the chamber and breathing whatever oxygen is in there that's pressurized.  After about 3 sessions in a row I noticed my shoulder and arm not feeling like they were pinched anymore.  Carrying my daughter around has taken a toll on my body as she is near 25 pounds of dead weight. 
2nd Week - We noticed a significant increase in her vocals.  She began making other sounds besides crying or screaming.  She also started purposely imitating the sound /Ma/ - for the first time inside the chamber.  I loved laying next to her as she put her hands in my mouth to figure out my speech and then copied me for the first time!  By this week my daughter responded to the staff also.  She started recognizing voices and knew what routine was coming. 

3rd Week - We noticed happier yelling, and also took note of her nerves at rest.  By the end of February her physical and occupational therapists made comments about her being able to withstand so much more activity they put her through during therapy.  She wasn’t so quick to get irritable.  It was during the third week and her gross motor capabilities kicked in with jumping as we held her on our laps.  She would smile and giggle at the chance to jump with help.  She also started alternating legs while standing making walking motions.  Instead of being stiff and rigid, she was ‘floppy’ at rest, which may not seem like a good thing, but her tone had decreased enough for her to start to build her own muscles rather than compete with the stiffness. She also started getting her mouth muscles coordinated enough to sip from a cup, a major milestone that will aide in helping us to wean off of breastfeeding if she can get liquids another way. 
4th Week - approximately 20 sessions into treatment, she purposely imitates the sounds of mamama, dadada, and also grabs toward her cup to drink.   It was also during this week that she took 3 naps over an hour and a half each - increased from her one or two 20 min. naps over the course of the day! 

5th week - We saw the eye doctor.  The time before we were there she hadn’t showed any improvement in her left eye.  After a 4 month period, 2 of those months doing HBOT, she showed remarkable improvement in her eye sight.  She remained a happier baby and is on track with a sleep schedule and kicks her legs a lot to facilitate movement. 

We finished our 24 sessions of HBOT and were happy with the results with intentions to return to do more after moving closer.  Other financial circumstances made it impossible to make it work.  We only saw minimal regression with regards to her eye sight after we stopped HBOT.  Everything else remained a good foundation to build on.