Sunday, June 8, 2014

#25 - Sharing the Load (Journal Entries from September 2011)

Sept. 10, 2011

Maybe I have been completely nieve all my life.  Some people go through some stinkin' hard stuff and carry some anxiety from it.  Something similar to war vets that come home and have nightmares.  I have never known this feeling of anxiety, but naptime is becoming harder for me.  It's easier for me emotionally to carry her around, even when she's sleeping.  I don't like her being out of my reach, let alone out of my sight.  The question of what happened that day is in my thoughts a lot.  Sickness?  One of the other kids helping?  Even an intruder in the room has crossed my mind.  We leave our doors unlocked a lot of the time in this little town.  What if someone came in while we were gone to church?  It sounds crazy to me, so I know how it would sound to anyone else.  It's hard to protect Bryer if I don't know what happened in the first place.  I feel like if I can cover all my bases, then magically I can turn back the hands of time and prevent it.  Everytime I lay her down for a nap, I check the bathroom, attached to our room.  I check under the bed and closet and corners before leaving the room.  If it was an option that someone was in the room to hurt her, I don't want it to happen twice.  I still lock the door religiously when I leave her to nap, and often times carry the key around with me in my pocket, along with the baby monitor.  I'm not sure when that will change.  When will I be able to let go of this routine every time I lay her down?  I suppose maybe as our older kids get bigger and she is less fragile.  The anxiety of not knowing is enough to make me crazy if I let it.

Bryer has a lot of doctor and specialist appointments and at each one, I ask each doctor what I can be doing to help her - if she was his child, what would he do?  I can sense that they don't believe this could happen to them.  'They' would never find themselves in this position.  I have to look past their negative ideas and just be true to myself.  I have to go and ask questions for Bryer.  But there are no answers.  They say I am doing everything that can be done - which is basic therapy appointments.  We bring her to appointments, work with her therapists, and provide an environment that's stimulating to her and meets her needs.  But what else?  There has to be something else.  With our other kids if I had a question, there was always a website, a parenting book, a friend to answer my questions.  You name it, I could find and answer.  Potty training, sleeping through the night, discipline ideas, teaching them to share...  But no one has answers for Bryer.  Since the traditional doctors have not had any answers, we asked our good friend who is a chiropractor what he would do.  Like he had been waiting for us to ask, he didn't even hesitate and said, "Hyperbaric oxygen therapy."  So that's the direction my research has gone.  If we stop breathing, our brain is affected first.  In a hyperbaric oxygen chamber, it's basically delivering 100% oxygen to her at a compressed pressure, to help infuse into her brain cells, heal brain tissue, and possibly create more pathways.  It's not 'traditional medicine,' so it's not covered under insurance.  To buy one is $5000.  Trying to find a happy medium within our budget... And praying that if that's the way God would have us go, then He will help us make it available. 

One night I was researching hyperbaric oxygen therapy and had reached a stopping point.  Jason had gone to bed without me and I was curious about other kids in Bryer's circumstances.  What can they do?  How do they turn out?  Because I don't have any other term to go on, I just searched for SBS.  I came across a page dedicated to a whole list of babies and children.  There was a list of names on the left side to click on to read their story and see pictures of them. 

Now call it the Holy Ghost, the Light of Christ, my conscience, but when I came across this page, I felt a strong negative change, like a pit in my stomach.  It was a warning that what I was about to see, I should not click on.  But I needed answers.  I needed to know how my baby could be.  Would she cry all her life at a simple change in environment?  Would she ever talk?  Crawl?  Walk?  Would her eye sight increase?  I should have known by my feeling that this was not the place to find answers, but curiosity got the best of me.  I clicked on 4 different names before I couldn't look anymore.  A couple of them were memorial pages of sweet babies that had died, along with the story of their death and the one accused.  They showed pictures of them as infants, posing for pictures and smiling.  Two of the pages I clicked on had pictures of babies that had survived.  One picture showed a sweet boy strapped onto a 'therapy board' and forced to stand.  His eyes were glazed over, he had a blank expression, his arms were contorted and the story about how he became this way made me cry.  I turned off the computer and cried.  Was this what the doctors thought was Bryer's future?  Without any more answers than looking up SBS and misdiagnoses, I had nothing to go on, and I definitely did not want to be seeing anymore of what I just saw.  The stories I read about misdiagnoses were too familiar to mine.  These people had other ideas, things that should have raised red flags to the doctors, alternate explanations - yet they were sitting in prisons. 

As I sat there crying, I thought about those stories of these poor babies.  They were left in the hands of trusted adults - a babysitter, a boyfriend, a friend.  Could it be that these same people were also innocent?  I can't imagine how that pain felt for these moms of the babies - of trusting someone so much with my child, only to have the doctors tell me that that person did the unthinkable.  If I were on the other side, and I had left my baby with someone, would I also side with the doctors?  Were any of these cases just like mine?  A misdiagnoses?  And the grief these parents must live with - was it all based on the false medical opinion of trusted doctors? 

The ideas of misdiagnoses could consume my thoughts if I let it.  I have a family of 7 to care for, I don't have time for the anxiety it brings to think about doctors.  But every so often I catch myself zoning out, recalling every detail of that day.  What missing piece to the puzzle have I not remembered?  As I did dishes this week, I was thinking about all the possibilities and things I should look up later.  It was filling up my brain as I loaded the dishwasher mindlessly.  Jason came back from the office in the front part of our house and interrupted my thoughts, "Will you answer Walker?  He's been calling for you for 5 minutes."  I was so absorbed in my thoughts that I hadn't heard my 3 year old calling for me from the bathroom.  I felt embarrassed, selfish, self-absorbed.  Maybe it shouldn't have been that big of a deal, but I didn't want this 'thing' to run my life.  I didn't want to be so caught up trying to remember every detail of that day, looking for the magical puzzle piece, that it separated me from taking care of my family. 

I need to find a way to clear my mind.  I have to let this go.  In our state there is a 5 year time limit in which they could file criminal charges.  So I feel like somehow I'm supposed to hold on to all this for a time maybe I will need it.  It feels heavy - like baggage I suppose.  I've never felt that before. 

Later that week 2 experiences happened that brought me huge relief.... 

Experience #1 - I was re-reading some articles in a church magazine.  I came across one titled "The Atonement Covers All Pain" from our last church broadcast, by Kent F. Richards.  He started by saying,

"As a surgeon, I found that a significant portion of my professional time was taken up with the subject of pain. Of necessity I surgically inflicted it almost daily—and much of my effort was then spent trying to control and alleviate pain.
"I have pondered about the purpose of pain. None of us is immune from experiencing pain. I have seen people cope with it very differently. Some turn away from God in anger, and others allow their suffering to bring them closer to God.
"Like you, I have experienced pain myself. Pain is a gauge of the healing process. It often teaches us patience. Perhaps that is why we use the term patient in referring to the sick.
Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

As soon as I read that, I realized that was ME!  He was telling me that this pain I felt in not getting answers had a purpose!  And like He referred to a 'patient' that was in pain, I also realized that I needed to BE 'patient.'  However badly I wanted answers for the past, needed answers about how to help Bryer, and needed to see into the future, I felt the strong feeling to just. be. patient. 

I went on to read something that hit me straight in my heart.  When I read it, I got goose bumps.  I felt this guy writing, Kent F. Richards, who I have never known, had written this just for me.  He said,

"Much of our suffering is not necessarily our fault. Unexpected events, contradicting or disappointing circumstances, interrupting illness, and even death surround us and penetrate our mortal experience. Additionally, we may suffer afflictions because of the actions of others.  Lehi noted that Jacob had “suffered … much sorrow, because of the rudeness of his brethren.” Opposition is part of Heavenly Father’s plan of happiness. We all encounter enough to bring us to an awareness of our Father’s love and of our need for the Savior’s help.
"The Savior is not a silent observer. He Himself knows personally and infinitely the pain we face.
“He suffereth the pains of all men, yea, the pains of every living creature, both men, women, and children.” (2 Nephi 9:21)

So if I was reading this right, GOD had allowed this to happen to help me grow closer to Him!  And not only had He allowed it, but He had put all the tools in place to help me get through it - including my Savior Jesus Christ - Him that knows exactly how my pain feels.  I don't know why some people get mad and turn away from God in their trials, but this is definitely a time I need Him more than ever.  I need His direction.  I need His answers.  Not from a website that leaves me crying at stories of other babies.  The answers to the very most important questions.  Why am I here and why am I going through this?!  He has loved me so much that He has allowed circumstances to happen to bring me closer to Him.  I don't think God makes bad things happen.  I do think he allows things to happen to better us. 

Experience #2 - We had a lesson from the Bible in Matthew.  We talked about what an oxen yoke is.  It secures 2 oxen together equally so they can share the load that they carry. 

Then we read these scriptures from Matthew, chapter 11....
28 ¶Come unto me, all ye that labour and are heavy laden, and I will give you rest.  This is me!  I am heavy laden, trying to remember all the details from that day that are weighing me down, looking for the missing piece.  I think about it so much, questioning what I read, trying to recall anything that would help solve this puzzle. 
 29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.  Ahhh, rest unto my soul.  That sounds so good right now.  I don't want my brain filled up.  I want to be the best wife and mom I need to be.  I want to be in the moment with my kids - not just a distracted shell of a person trying to find answers. 
 30 For my yoke is easy, and my burden is light. My YOKE is easy.  My BURDEN is light.  I have to comprehend what all this means. 

If I can find a way to harness myself to the healing power of my Savior, then He will help me carry this load.  I can choose to hand it all over to Him, or I can choose to carry it myself - for up to 5 years if I need to. 

A good friend of mine has a saying, "When you hand something over to the Lord, don't you steal it back out of His back pocket as He's walking away." 

It's so true!  So from this time forward, when I catch myself replaying that day in my head, I will choose to hand it over to Him to hold for safe keeping.  I will trust that if charges are filed than I will be able to recall those details when and if I need to.  When I want to stay up late researching things that I can't find answers to, I will choose to trust that He has those answers and will reveal them to me when He knows I am ready.  I will choose His way.  When I go into a doctor's office and know what they are thinking of me, I will picture myself going in with my Savior, all yoked up next to Him, helping to pull this load I carry with me.  When I want so bad to know what Bryer will be like in a year from now, 5 years from now, or as an adult, I will trust that she will be exactly how He would have her.  And even if that's not how I would like, I still have the hope that she'll be made perfect in the next life. 

I can tell you now, in current time, that I have felt that 'rest unto my soul' like it says in the scriptures.  I can see all those things that I worried so much about - and that the answers have come as He was ready for them to come.  In the meantime, I didn't let myself stress over the things I couldn't control.  It was good for my mental, physical, and spiritual well-being.  It wasn't a one-time event to hand my worries over to my Savior.  It's something I still have to consciously do on a regular basis.

Sept. 13, 2011
My heart is heavy and I know a lot of it is just my emotions, but I worry.  We had my nephew's 1st birthday party Sunday and it just kind of hit me like a ton of bricks that Bryer is almost 1 - but she's not almost 1.  Our life was so different a year ago.  We were on cruise control.  We were expecting our 5th baby and life was so good.  Easy.  Hectic and fun and crazy and easy.  I enjoyed volunteering at my kids' school.  I liked doing things for our local library.  I loved getting projects ready for our county fair and working with my kids on their 4H projects. 

And then "this" swooped in, took me off my feet, dangled me upside down to shake all the pride out of my pockets, and then put me back down and expected me to take off running again like I always had. 

I had a conversation with Hunter this week.  This 10 year old said some things that really made me stop and think.  As I tucked him into bed, he asked about Bryer's eye sight.  He wanted to know what she could see and what she'll be able to see later.  I told him that we didn't really know.  She seems to recognize footsteps and voices better than faces.  I added that maybe God has given her this as a special protection.  He perked up in bed and said, "Ya Mom!  Maybe Bryer won't ever have to worry about seeing violence on TV or pornography or bloody things!"  I kind of laughed and agreed.  He layed back down and then spoke his thoughts outloud.  "Imagine how lucky Helen Keller was!  She never had to worry about any of that - and she also didn't have to worry about hearing bad words or people yelling or loud trucks or scary sounds on movies!"   I left his room, so thankful for my kids with such a strong understanding of the big picture.  I'm thankful for Hunter's optimism. 

Bryer's very favorite activity is listening to music, so Jason bought a ukulele and is slowly learning to play!

I know the purpose of life is to #1-get a body for our spirit and #2- Be tested.  We have to learn and grow and understand how to get back to God.  It's just that simple and that complex at the same time.  With all the temptations around us, maybe it would be easier if we had blinders on to keep us away from the things we shouldn't see or do. 

We aren't able to grow the way we are meant to if it's all 'easy'.  Somehow I thought I could pick my trials.  I didn't know they could pick me.  But I guess Bryer did.  She was chosen to be mine before this life.  I am so thankful for that.  I wonder sometimes if she was one of the most valiant there was.  And that's why she has made her way here to our family in the 'protected bubble' that she has.  I have always really liked the quote, "Let there be no empty chairs in our Heavenly home."  And in a way, Bryer's chair is already reserved for her.  I wonder what things will be like for her - and for us as a family - as she grows.  The kids just see her as Baby Bryer.  They don't see her imperfections.  Yet as I write that word 'imperfections', I realize they are not.  They are her protection.  Her insurance to return to God. 

She loves her Daddy! 
While I wish I could just sit and relish in that moment of the eternal plan of things, life still has to be lived.  I still have to figure a way to grocery shop with her while she can't yet sit up in a cart, but is near too big to be in her car seat riding in the cart.  I still have to figure a way to support my kids in their classrooms and make sure Bryer is stimulated and getting her therapy needs.  I still have to figure how to have her in my sight as she lays on the floor, unable to roll over sit up as I clean the house and help with homework.  I still have to figure a way to get her to eat and chew and feed herself so I can wean her from nursing.  Because she is almost a year.  But she's not.  Am I in denial? 

One year olds sit and crawl and pull to stand at the couch, even cruising, and put little trinkets in their mouths with their amazing fine motor skills.  My almost 1 year old, given the chance to lay on her back, will just lay on her back.  Yet there are amazing times that she laughs when no one is around.  I tune into any little hint of sound she may hear - and I hear nothing.  I sense that that is when her angels are around her.  We kind of joke about it, but it's true.  She will giggle every so often for no apparent reason.  "She is contagious", were the words my mother-in-law used a few weeks ago.  She smiles and you can't help but smile.  She laughs or gives open mouth kisses (only to me, I might add) and I can't help but love her! 


Are we born so in tune to God, so fresh from His presence?  And then we spend a lifetime becoming immune to it, only with the goal to return there one day?  Then why do I complain that Bryer has been preserved at this time to be here on earth with us and help the rest of us prove ourselves worthy to be there too.  To help the rest of us.  To help.  It's a fine line to walk and live day-to-day lives with the knowledge of eternity.  If I didn't have to eat or sleep or clean or cook or shop and I could just sit and enjoy the moment of here and now and preparing for the next activity, I would.  I could.  Maybe that's the switch to make.  To enjoy her.  Really, to enjoy her.  Not comparing, not worrying, not following a timeline.  She's obviously on God's timeline, where there is none.  There's no developmental milestones, no 'below normal' for Him, no time constraints that something has to get done. 

My expectations for the future are so unsure now, where I was so confident in the way our lives were going.  I looked forward to each and every day with my children and the stages they were in, for they pass through them so quickly.  And here Bryer sits in her infant stage, her innocence, with her angels surrounding her.  And she laughs.  Oh she laughs!  I looked forward to, but not at all anxious, for the time my children would be on their own and leave home.  Will that happen now?  "I have never wanted something so bad and had to go without," still rings in my ears as Jason and I talked a while back.  I can say I would like Bryer to get better.  And yet 'better' is so relative.  She's so close to God.  So precious.  So contagious.  So how could she get any better than that?  Physically, health-wise - this is all a stage.  A glimpse in the eternal sceme of things.

I will go pick up my house while kids are resting before my big boys get home from school.  And try to keep an eternal perspective in this worldly day-to-day life.  Today I have listened to this Hilary Weeks song over a dozen times, trying to soak in the message. 
(Thank you to whoever made this video and for the Mom in it that illustrates life so well with little kids.) 

God buoyed me up and knew I would need to be in this frame of mind so that I would be prepared for the next chapter of things to start in October 2011.


  1. Your faith is amazing. And my favorite parts are always accompanied by pictures of beautiful baby Bryer. Xo

  2. Krissi, I linked to this blog from Holistic LDS sisters on facebook, and in reading through all of this, I started to wonder if Bryer has face blindness. I realize she's what, three now? Not knowing what her life is like currently, I don't know how she's doing developmentally. Anyway, I found this website:

    Maybe you already have a diagnosis, or maybe she's fine. I hope so. I pray for you all and have been touched by your situation. God bless.