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

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.   

No comments:

Post a Comment