#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.

 

#24 His Ways (Journal Entries of July and August 2011)

People ask all the time how our kids have done through all of this.  It's been a blessing to have them mentally prepared going into all of this.  We have had so much family and community support that 'normal life' has carried on, whatever that is.  They missed some school, but their teachers catered to them and they got extra time with their cousins.  Our older ones didn't have to skip basketball season or get out of their routines too much, which were all ways to soften things for them.  The younger ones are home with me anyway and that's where they stayed - I just happened to be at a different house for a while. 

As well-adjusted as I felt they were, one day a comment from my 4 year old blew me over.  We were sitting in the back room of our little local library, listening to a "Bike Safety" presentation by one of our local police officers.  He was using his kids to help demonstrate how a helmet should fit and the safe way to ride.  The event got over and we packed up to leave.  On the way home, Piper asked, "Where did that policeman get his kids?"  These were kids she saw around town and I thought maybe she just didn't put the relation together.  I told her they were his kids.  She said, "No, but where did he get them from before they were his?"  I wasn't understanding her question, obviously.  She went on, "You know, how the police took Bryer.  Who did that policeman take his kids from?" 

I felt my heart take a leap in my chest.  This poor little girl, in one question, illustrated her warped sense of these trusted officials in our community.  I wanted to erase everything my innocent 4 year old had been exposed to.  I had been so careful to talk positive about policemen and women.  But none of that positive talk could erase that they had taken her baby sister away from us.  I tried not to tear up and told her they really are his.  "They grew in their Mom's tummy and that policeman is their Dad."  Then I went over again, like we have again and again, that police are good guys.  "They are there to help us.  They took Bryer just to make sure that our home was safe for her to come back to."  

I never want my kids to be afraid of policemen.  If they are lost or get kidnapped or need help, they should feel safe going to an officer.  But this whole process has violated my feelings of safety and the policemen being the good guys - and now also my sweet 4-year-old's trust also. 

After the conversation with Piper, I realized we needed to arrange something very purposely to help form our kids' impression of officers.  It wasn't enough to just wave or say hi when we saw a police officer (which I thought would be enough of an example for my kids).  After talking with Jason, I gathered enough courage to call this officer's house.  There was no answer so I left a message.  I asked their family to dinner.  I prepared for the time he or his wife would return my phone call.  I would give them a brief explanation for what we are trying to teach our children and how we hoped he would come to dinner in his uniform, so they could have a positive experience and see that police are just nice people in uniforms that can help us.  I never got that call back.  Even thought I would have loved to have that experience for my kids, I don't blame that family.   In a small town, maybe that was an awkward situation.  Maybe they thought I would be buttering them up for something.  After all, charges could be filed at anytime, and that puts them in an awkward situation.  But if there's one thing I have learned, it's how to stand up for what's best for my kids - no matter how uncomfortable it is or outside my comfort zone, some things just have to be done.  Picking up the phone to call this family was not an easy thing for me, but I hoped it would patch my kids' trust in that authority. 

July 20, 2011

As I sit here at 10:45 p.m., my mind plays tricks on me and I still worry that something might be wrong.  It's an irrational thought.  She's happy, smiling, playing with her toys.  She just woke up from a long 4 hour nap.  Every time I checked in on her (many times) during that time, I wonder what makes a baby continue to breath even when she is asleep.  What happens if she just 'forgets'?  That's what it feels like she did the last time.  How do I shake this anxiety I feel when I step into the locked bedroom to make sure she's still okay?  It side-swiped me out of no where before and sometimes I wonder if I missed some warning signs, so naturally I worry myself that something is wrong now that I'm not picking up on.  Then I go back to my belief system and the faith I have in God to protect us.  I have repeated the quote over and over in my head since I heard it in church, "Faith and fear cannot co-exist."  It may as well be written on every wall in my house, I recite it so much.  Trying to understand His plan in all of this is overwhelming, yet I still try to comprehend it.  Could it be that every detail of it was all in His hands from the beginning?  And even though I know it was and still is, it's still hard to comprehend.  I want to put my complete, total faith in Him that Bryer will be okay, that her crying will get better, that she will continue to breath while she sleeps, that my anxiety will subside with faith, that all of this was for a greater good, but it's scary to have that much faith in something.  Seriously emotionally scary.  It's easier to hold on to the "What If's."  If I just stay in the moment and don't 'hope' for something better, then I won't be disappointed if the future doesn't meet my expectations.  As soon as I think that way, I realize that's not a thought from God.  He is Hope.  He wants us to strive to be better.  To have high expectations.  To reach higher than we thought we ever could all by ourselves.  Still, I think, "If I give it all up to Him and something happens to her, then I second guess myself all over again."

I'm reminded again and again that faith does not come when things are easy.  Faith is scary when we don't know what is ahead of us.  But, like the kids song says, "Faith is like a little seed.  If planted, it will grow."  So I hope that my tiny seed of faith is sprouting because I need it - for me, for Bryer, for Jason, for our whole family to grow and learn from this.  I have to believe that when I lay Bryer down for a nap, that she will be okay when I go to check on her.  I have to have faith that God will help her continue to breath while she's sleeping and that He will watch over her while I'm not right there with her.  If I don't have faith, then anxiety takes over and I let worry overtake my emotions. 

Sometimes we go through things and don't know the 'why' or see the blessings until it's all over - or maybe until years down the road, maybe not even in this life.  Mandy and her family have been a great blessing to our family, to see them progress after she started praying for Bryer in the hospital.  I'm so thankful that God has allowed us to see this change as He works in them.  It helps us understand 'why' we were asked to endure this challenge. 

 

I fully realize that no one is perfect, but sometimes there's significant change in a person's life that is so inspiring you take notice.  Mandy has shared with me some of her past.  About 3 years ago she started coming to our cooking classes at church during the week. 

Then it was Relief Society Meetings, our women's study group, on Sundays.  Then it was for all 3 hours of church services on Sundays.  I loved watching her grow and get to know her, but then she stopped coming all together.  She wouldn't return my phone calls, I felt like she avoided me in the store, I didn't know what happened or how I could help.  She explained to me now that it was too hard to come to church and try so hard and watch our 'perfect family' sit still in the pew in front of her and know she could never have that.  She was comparing our kids,  who had been taught their whole lives how to act in church (and lots of times still struggle to be reverent), to her kids and their few months in church. It's just not fair to compare our weaknesses to another person's experiences.

Obviously no one has a 'perfect family,' but that's what she saw.  I felt awful for her.  I had never intended to act better than her, and in fact the opposite - I was excited to watch the changes she was making and how she was growing spiritually.  She was humbled while we were in the hospital with Bryer and started praying for our family.  She saw that - in her words - 'even we had problems,' and she watched how we dealt with them with faith.  When she asked if there was anything she could do while we were gone, I asked her to keep our pew warm at church.  She has not missed a Sunday yet.  Mandy's husband, Jamie, started coming too along with 4 of their kids. 

Their family has grown spiritually and Jamie was baptized this month.  This big, lumberjack of a man, who started going to church with Mandy just to keep their kids calm, has now decided it's not just for her anymore.  He's ready to commit and turn his own life over to the Lord.  His testimony of our Savior has developed as he's seen prayers answered, watched faith grow in his wife, and now for this event has traded his rough, logger edges and full beard for a white jumpsuit and momentum to move his family in a better direction.  Inspiring, really!  I lost my breath for a minute as I watched Jason baptize him and all the sins of his past life be washed away in an instant.  He hasn't always had the easiest life or made the best decisions, but his decision today will shape the way he and Mandy lead their family from this time forward.  Isn't that what we all need to do?  Start new - every day if needed, and try to do better?  I know they will still make mistakes and still have struggles, but it was neat to see his dedication to turning his life onto a better path.  He's given up a lot of things for the good of his family.  Sacrifice in a very Christ-like way. 

If this is the 'why' - so that someone else can more fully comprehend the Lord's love for him - then I am willing to grow also through this challenge and accept the role that God has asked me to play in Mandy and Jamie's changes.  This did not happen because of me or because of Bryer or because of Jason.  It happened because the conditions were right for God to work miracles.  I'm humbled to be part of those 'conditions.' 



 

 Mandy attended the the temple for the first time and asked me to go with her.  I was so excited for her to feel that peace that I find at the temple, away from all the worldly cares and things that weigh us down.  I loved sitting there with her in the Celestial Room, basking in the spirit that's there and recognizing all the blessings we've had along this adventure.  It's so neat to see Mandy's life, her demeanor, her 'glow' come back again.  She was so excited to go to the temple - and anxious to learn about the gospel and soaking it all in and wanting to teach the kids at church in Primary the very best she can.  It's an amazing transformation to watch.  I still feel honored that God chose us to endure this trial. 


Raini, Mandy, and me in 2007 with our babies after a cooking class when Mandy started coming the first time around

Mandy's first temple trip in 2011 - Raini, Mandy, and me

August 23, 2011

It's amazing how much service does for my spirit.  Yesterday I was talking with a friend as she held her little boy who is not much older than Bryer.  As I talked to her, her little boy's eyes caught me off guard and I found myself looking at his light blue eyes that were so fixed and attentive to me talking and watching my mouth move.  And right there in the middle of my sunny day sitting in the grass, talking with a friend, I wanted to cry.  I wanted to cry because I don't know if Bryer will ever see me like that.  She may never see the vivid details of my face or watch so attentively to my mouth making words. 



Bryer with her Benik thumb separators -
encouraged that she is bringing one of her hands to her mouth

As I left with that feeling, I felt sad.  I went through the motions of packing kids into the car and making sure everyone was buckled.  I came home and got kids started on jobs while I started to nurse Bryer.  I just felt like a shell of a person.  A little like a robot.  It took me about 20 minutes to get my feelings and thoughts together, and as I organized my brain, I kept thinking of a good friend of mine that just had her 6th baby on Monday.  No one was lined up to take dinner to her for that night, so I decided I would just make up a big pot of spaghetti and share.  I went through the motions of just letting my body move, not really thinking about what I was doing.  As I worked, the thought came to me to have her kids over for a dinner party.  Her husband had to leave to go back to work the afternoon after the baby was born and hadn't got a good chance to enjoy his wife and new baby since the delivery.  My mind started racing with ways to make a dinner party with 10 kids exciting.  There would need to be candles.  And fancy dress up clothes for the girls.  And fun. And. And. And.  The list goes on.  So I picked up the phone and told her that was the plan.  She is always the first to give and the last to take, so for this I just had to tell her that's how it was going to be.  It was clear that this is not what she needed, but what I needed. 

I picked up 4 of her kids just after 5.  The kids played while the last of dinner cooked and I dished up.  Her kids' ages are staggered with mine, so they all play really well together.  It was such a blessing to have her kids over.  At the dinner table I heard our oldest kids talk about the creation and how big foot couldn't be the link between apes and humans because God created humans and apes separately.  The girls wore their dress up clothes to eat and the little kids were fascinated with the candles on the table.  It was a blessing to have them over for a dinner party.  I felt something, a little less like a shell.  Unlike a robot, I needed to feel my divine purpose for something.  I needed that feeling of service in my heart.  No more self pity for what Bryer couldn't do or couldn't see or how she could be as she grows, I just needed to serve. 

I read an article titled Hope from a church conference this past April.  He talked about how hope is one leg on a 3-legged stool.  The other 2 legs are faith and charity.  I couldn't agree more.  The thing that I go back to when I have that sadness that Bryer won't ever see my face the way other babies do, is the hope she will be made perfect in the next life.  When we are all resurrected, reunited with our bodies, we will be in our perfect form.  Bryer will be perfected!  Bryer. Will. Be. Perfected.  It's an amazing thought to experience my daughter in her fullness.  I don't know how people cope during difficult times without the knowledge of the gospel.  I don't feel like my difficult time is over and I have the gospel.  I know it also relies on faith and charity - those 2 other legs.  I feel blessed by having charity in my heart.  To be able to help others.  To have these sweet kids over for dinner or give service, not 'even in my time of need,' but 'especially in my time of need.' 


On a positive note, Bryer is passing toys between her hands now.  She only uses her left hand to put things in her mouth, so when I put things in her right hand, she's learned to transfer it over to her left hand in order to put it in her mouth and check it out by mouthing it.  It's a small miracle, but a miracle nonetheless.  I feel guilty of being so busy the past 2 days that I feel I haven't 'tuned in' to her to read every single one of her cues.  It's more of going through the motions.  Sometimes I just need a little break of every little detail.  Not because I don't want to give her what she needs, but it makes me seriously crazy if I don't.  I have too much child development information rattling around in my head constantly to be organized.  I'm a better Mom if I have a break (even if that's having a crazy day that I just talk to her while she's in her bouncy seat and get things done by going through the motions).  I feel refreshed and ready to tackle more days when I give her unconditional stimulation and sensory experiences and provide rich communication skills.   

It may just look like a cute picture, but it was a big day when I could lay her down on the hardwood floor and trust that she would have the head control that she wouldn't bonk her face on the floor when her head got heavy!  I try to focus on that progress and not that her hands are in such tight fists.  The details I notice of her movements could be questioned all day long. 

Her therapists have been phenomenal - not just for Bryer, but for our family.  I didn't see it coming, but God did.  He put these women in our lives to be supports for Bryer through us.  I feel very blessed that his hand has been in the choices of who comes to our home.  The things I struggle with are trying to find a balance of padding things for Bryer so her senses aren't overloaded and still making a life for our 4 older kids.  Her OT has been wonderful at helping me find a balance and tips and tricks to use to keep Bryer happy so she can be along for the ride. 


Bryer and her amazing Occupational Therapist

 

One things she said at our last visit confirmed what my heart needed to know.  There is a separation of how I take care of Bryer compared to how I take care of the rest of my kids.  When the doctors have heard that we have 5 kids, they have been negative about it - that I won't have time for Bryer's needs or be able to give her the attention she needs.  Bryer's OT this week made the comment of how lucky Bryer is to have so many people around that care for her.  It will help her stretch her skills of who is who, have faces down at her level to focus on, and older siblings to learn from.  Her inspired, timely comment relieved me and reminded me that Bryer was sent to our family as our 5th child for a reason.  He knows what He is doing.  If she was meant to have all my attention all the time, she would have been born first. 

Bryer and Piper

His ways are the best ways, even if they don't make sense to us at the time. 

A baby needing so many appointments, attention, and special care - being born 5th doesn't make sense to us, but it's just what she needs according to Him.  Providing service for someone else while I feel depressed and defeated does not make sense, but it's what my heart needed - not for the friend I was serving, but for me.  His ways are always the best ways. 

 

My job is just to stay close to Him and remember what His ways are and how to feel His influence.   

 

#23 - Closure (Journal Entries Through April 2011)

We hear it again and again - that the people around us influence the way we act.  I've always hoped I was a strong enough person to withstand those around me or make good decisions despite what others are doing.  But when I have to walk into a doctors' office where I know I'm automatically put on the defense, it's those positive people in my life that carry me.  Their prayers and thoughts literally carry my legs into that appointment, ready to face whatever comes. 

We have been working out the kinks to make sure everyone is comfortable with us going home.  Our case worker, the guardian ad litem, and the doctors all have to feel okay with us before they will let us take Bryer home.  Jason went with me to the pediatrician appointment today.  I probably looked fine on the outside, but my insides shake going in to one of the doctors' offices.  I don't like confrontation.  I don't like feeling defensive.  I don't want to talk about any of it because every time I do, they shoot me down without much explanation and I just feel like crying.  What use is all my time researching if they won't listen or explain one way or another?  We hear it over and over again, "This could only happen in a severe car accident or a fall from a 3 story building."  It's the exact same wording from her pediatrician, the neurologist, and the ophthalmologist.  Is that their canned answer from medical school or what?!  It's seriously the exact same words from each of their mouths. 

It helped having Jason there.  He's so composed and straight-forward.  He's not afraid to rock the boat, but in a respective way.  He's not sorry for our stance on things and he's not willing to back down.  Me, on the other hand, would rather huddle at home with my kids and let them say whatever they want behind my back.  I know the truth and God knows the truth.  And really, that's all that matters.  I would be fine with that, just hidden away from all the judgments against me.  But we can't live like that.  It's not in the best interest of my kids and especially Bryer who needs continued appointments to these doctors and specialists.  I still have to take her to the appointments - no matter how I feel or whether I want to or not.  A lot of her appointments are to the same specialists she saw in the hospital.  They have 'abuse' written all over their notes. 

Good thing I took Jason to this appointment, because he was all of the above, that I wanted to be, but couldn't.  He was calm and collected and confident.  Everything I hoped that I could be.  He had questions and shared answers with the doctor.  He naturally has a calm nature about him, but he's not afraid to voice his opinion.  He likes to discuss things and this topic of Bryer was no exception.  About half way through the appointment Bryer started getting fussy.  I knew her cry.  It was turning from 'I'm upset' to 'I won't be able to calm down unless I nurse.'  Unconsciously I let her cry while I tried to sway with her and calm her down any other way.  Jason and the doctor were talking and I was trying to pay attention.  She got really worked up and eventually I had to sit down to cover myself while I nursed to calm her down.  As she quieted, I realized how loud she had been.  I hadn't realized the contrast until it was quiet again.  I thought to myself, "Is that the demeanor of a Mom that shakes her baby out of frustration?!"  Had the doctor noticed that I am okay with the crying?  All but one of my babies have been colicky.  If that's what they think - that I snapped - then wouldn't I be frustrated about the loud crying here in this confined room while I try to hear a conversation? 

By the end of our appointment, the doctor felt good about Bryer being in our care 2 hours away from his office.  He said it was good to know that she's with parents that know CPR and that we have experienced seizures with our older boy, so we know what to look for and what to do if Bryer has one, since she's still on preventative seizure medicine.  It was also promising to him that Jason works from home so he would be close if I needed anything.  The doctor felt okay with releasing Bryer to go home with us, with the expectation that Health and Welfare would still be involved and be investigating more.  Is it strange that he expected Health and Welfare to 'investigate' more when this is clearly a medical diagnosis - his specialty.  Of course, I didn't say anything and let Jason do most of the talking.  I am just happy that we got the first okay to take Bryer home with us!  I was in awe at how Jason handled the situation.  Had I been the one to do the talking... well, I don't even want to know.  I didn't want to be the one to bring up the question of taking Bryer home.  I didn't want to risk being shot down. 

The guardian ad litem has been harder to convince.  She's been coming around, but she still really wants someone to 'supervise' us.  The more she gets to know our family and the more she researches on her own, the more it doesn't make sense to her either.  There's always those cases on the news of an abused child being returned to the home, only to have worse things happen.  I think that's what she's afraid of, even though she wants to trust us and believe that we are innocent.  I try to see things from her perspective and be patient for her to feel comfortable. 

Our Health and Welfare case worker has really warmed up to Jason and I.  She has admitted that we are not her typical family that she works with.  She told us she's been impressed at the timely manner we've completed things in our 'case plan' (our list of 'To Do's' to get Bryer back).  She said it is very rare for a family to work so quickly and have so much family support.  She was a great advocate for us and I think there were some things said between her and the guardian ad litem to help them come to their decision. 

They have allowed us to take Bryer home - under a few conditions.  The main one is that they want someone to come in and 'supervise' me 6 hours a week.  If someone would have sprung that on me out of no where, I would have thought they were ridiculous.  A mother being supervised with her own children?!  But since I've been 'supervised' for the past nearly 3 months 24/7, then 'only' 6 hours a week is a huge leap in the right direction!  Funny how things are all relative!  The guardian ad litem, as well as the case worker have also said they could pop in for a visit at any time once we are home with Bryer.  Great!  More the merrier!  Like we have offered from the beginning - come to our home anytime.  Come for dinner.  Stay for the weekend.  Stay for a week.  We are an open book.  It may not always be the cleanest, but there is no way we treat our children that I would ever be worried about someone else 'popping in' to see.  It's something we've begged for from the beginning - get to know us as a family and you'll see!  Still, no one has come to our house to even know whether we live in a shack or a mansion. 

So, we started our search for a 'supervisor' that would volunteer 6 hours of their time each week to watch me with my kids.  It's a strange thing to be on the lookout for my own babysitter.  Lucky for us, our church is full of people wanting to help, so we just needed to get some names approved with our case worker.  We chose 2 ladies to each come in 3 hours/week.

*****


Home has never felt so good!  It's so nice to have each of us under one roof.  Eating at one table.  Saying prayers together in person, not over the phone.  We were able to do Bryer's baby blessing at church on Sunday.  It just completed some things for us, emotionally and spiritually.  We had hoped to do the blessing the beginning of December, but 3 of our older kids had chicken pox, so we opted not to have cousins and family travel up for it.  Then Bryer was admitted to the hospital.  One thing led to the next, and now she's 5 months old.  The dress my Mom made her to wear when she was 2 months old, when we expected to bless her, doesn't fit anymore.  She worked hard to finish a new dress for her just in time and it's beautiful!  My Mom has used some of the extra fabric from my wedding dress in all of the kids' blessing outfits.  The liner of Bryer's diaper cover came from that fabric. 




Trying to get a good picture of Bryer before church was...  a challenge.

She's happy if she's being held or nursing. 
Doesn't she look like she could say, "Please don't take me away from my family!"   

 


One of my all-time favorites of Bryer and her Daddy...  With all we have been through, she is such a blessing to our family. 



We tried to do more pictures a few days later, when it was quiet, no chaos of getting ready for church, and she was happy

I was nervous for the blessing because Bryer is so sensitive to her surroundings.  Even being handed off from me to Jason and taken to the front of the chapel could have started a crying fit.  During the blessing, Bryer was quiet and calm.  She was at peace as a circle of 6 of our closest male family members that hold the Priesthood surrounded her at the front of the church.  That peace alone was enough to start the tears running down my face.  Jason laid his hands on her head and gave her a blessing, similar to a prayer.  Through the Priesthood, the words that were spoken were what God would have said if He were here.  Jason blessed her that she would have great joy and that her sorrows would be swept away.  He blessed her to be a strength to her family and those she associates with.  She would have the ability to bring smiles to faces and that her body would heal itself and she would enjoy the time with her siblings and parents.  He closed the blessing and told Bryer that she is blessed with the love of her Heavenly Father.  The sweet, peaceful spirit that was there in that chapel today was miraculous.  Our congregation is small enough that we get to know each other very well.  Our own family was not the only ones touched by the words that were spoken. 

*******

I don't know what I was expecting when I agreed to have these ladies from church 'supervise' me.  I thought maybe they'd sit on the couch and have a 3 hour conversation with me.  Or just sit and take notes?  I should have known better!  The first time one showed up for her 2 hour time slot she brought a big bag of flannel board cutouts and entertained the kids and let them tell her stories with them.  Bryer was fussy that day, as usual.  Her poor little brain is on overload a lot of the time with so much new to take in and so many of her senses being stimulated.  All the noise from 4 other kids, the 'new' house, the smells, even touch can be so limiting to her.  On this day, I stood rocking her back and forth in fetal position to help her calm her nerves.  I watched this sweet lady play with my kids in such a thoughtful way.  And I tried to blink back my tears.  Why, oh why, have I been so blessed with these people around me to help me get through such a terrible situation?  The very suggestion of taking 4 hours out of their week was no big deal and they jumped at the chance.

The next time one of them came, she brought all the supplies needed to bake cookies with my kids while I rocked and nursed Bryer.  They sometimes folded laundry or helped me finish up dinner.  These early days with Bryer at home were very rough.  She cried so much at so many things.  A lot of my time was spent nursing her on the couch or rocking/swaying her in fetal position.  I asked myself many, many times how I was supposed to be a Mom to 4 active kids while I had 1 baby that couldn't handle anything of normal life in our family of 7.  How could I support my kids at basketball games or t-ball practice or help at the school or any of our normal activities?  I couldn't take her to the store, could hardly make dinner without taking a break to calm her down, I couldn't fold laundry or wash dishes or any maintenance stuff that moms do.  She was the happiest in a dark, quiet room being held in fetal position and swaying back and forth.  Forget about deep cleaning anything!  I felt like lots of times I sat on the couch nursing and pointed orders to my kids to tell them to stir the hamburger or where that clean pot needed to be put away or to please be quiet so Bryer could calm down.   At ages 2, 4, 7, and 10 that's a lot to ask!  On a day like one of these, I wrote this in my journal:

I have been missing my time with my older kids so much and feel like I am always asking them to do things instead of enjoying my time with them.  Jason too.  He works so hard for our family during the day and takes extra breaks to come back and see if I need anything.  Bryer requires so much individual attention.  I feel so bad for her when she cries.  If she were my only child, I could stay busy 24/7 with holding her, rocking her, feeding her, calming her.  But, she's not my only.  She's my 5th.  How do I make this work?  I was praying about it this morning and then 'our supervisor' came this afternoon.  Usually she plays with the older kids, but today she offered to hold Bryer.  As I passed her off, Bryer wasn't very happy, but she took her to a quiet room and swayed back and forth with her just like I do.  I had my arms free for about an hour to make dinner with my kids!  We sang together and danced in the kitchen while we cooked.  It felt so good to just have time with them and know that Bryer was in good hands.  Jason could concentrate on work and not have to come back to check in to see if I needed anything.  For an hour, I felt normal again.  My spirit needed that so badly- to just have some normal mixed in to this craziness.  Bryer went to sleep during that time and I didn't feel guilty that I wasn't the one that rocked her to sleep.  I can't describe it any other way, other than healing.

I know it sounds silly that these ladies have made my life so much easier during their 6 hours a week, when really it was supposed to benefit Health and Welfare.  Did God know I would need these circumstances during this transition back home?  I'm thankful that I haven't fought against it, because it really does feel like an answered prayer through two extraordinary ladies.  It just happened to come as a Health and Welfare requirement.  Another reminder that God is in charge here. 

One of our first Sundays back home...  Kids ready for church and Bryer not very happy, as usual

********

Today something miraculous happened.  We went to Jason's parents' for dinner.  I love being with family, but Bryer doesn't like the chaos so much.  There are usually over 20 people there at family gatherings and we have so much fun laughing and preparing food together.  It was nice to know we were going back to 'visit' and not that we were living there.  I was still feeling bad for Bryer though, knowing she would have a rough time with so much noise around.  I planned to take her to an empty bedroom or another part of the house to help her stay as happy as she could be.  I ate my food in another room where there were only a few others instead of all the kids and adults serving food and cleaning up.  After dinner the adults were talking in the living room so I attempted to take Bryer with me in there.  Kids were running in and out and I hoped that I could enjoy our visit and not have to stay in a separate room.  Bryer didn't get fussy.  I tried to play with her and she started giggling.  In a room full of people, she started giggling!  With kids in and out and so much stimulating her, I tickled her and she laughed!  It was such a miracle that Jason's sister snapped a picture while she was laughing.  It's not an instant miracle like healing a leper in the scriptures, but I'll take it.  Who knows what kind of healing is going on in her brain?! 

***********
By the beginning of April we had fulfilled all our case plan requirements.  Jason and I had fulfilled all the councilling sessions required, we had both proven our CPR certification, we had Bryer's crib in our room with a lock installed on the door for when she was sleeping.  We had a baby monitor in place to hear her, we had subscribed to a type of Life Flight membership, in case our family ever needed to use that emergency service.  Still, Health and Welfare was not willing to close our case.  A document had to be signed that said we were admitting to being either neglectful or abusive parents.  It seemed so absurd.   Even after we have been through and shown - all wrongfully accused - that we were supposed to sign something that said we were guilty of all this.  What happened to 'Innocent until proven guilty?' 

In a meeting with our attorneys, we asked what would happen if we didn't sign.  They said Health and Welfare could keep Bryer in their custody until she turns 18. 

Even worse, in this same week, I was served child support papers.  Health and Welfare was suing us for child support for the length of time she was with the foster mom and also in my mom's care.  My Mom had made it clear that she didn't need to be paid or reimbursed for helping, but Health and Welfare still pushed for it.  This is after we provided all Bryer's clothes, food, diapers, wipes, blankets, and anything else that was requested. 

About this same time, my Mom's big freezer went out.  She came to me and told me she needed to talk to me about something and hadn't known how to tell me. 

When Bryer was transferred from the foster mom to my mom, she came with a large cooler full of my pumped breast milk.  More than just an extra day or even a week.  It was 1/2 a freezer full of the milk I had been giving to the foster Mom.  She felt Bryer was less fussy on formula, so she didn't use my milk.  She lied to me every time I asked her how the supply was going or if she needed more milk.  Every time I woke up to my alarm instead of my baby crying, pumping in the middle of the night and while riding in the car and on my way to foster visit appointments - all that milk was stored.  Every time I didn't have an appetite, but ate so I could make milk for Bryer.  My sweet baby never got the most nourishing food she needed during her prime recovery time.  Now my Mom broke it to me that the freezer had gone out and all that milk was thawed.  Maybe it's silly to most people, but there were tears over 'spilled milk.'  I needed to just cry out my frustration.  Get it all out there.  My disappointment.  The one thing from myself that I could offer my baby had not been given to her. 

Then as soon as it hit, I was over it.  I couldn't and wouldn't let the choices of someone else drag me down.  I wouldn't let this 'uncontrollable' influence the things I could control.  There is always a positive side to things.  Always.  So I searched for that positive.  I still have my milk supply for Bryer right now.  Even though all that milk was wasted, I could choose now to give her the best.  If I am doing everything I can, I have to believe that God will make up the rest. 

*********

After many meetings with our attorneys, we adjusted the wording on the document so that it stated that we were not abusive or neglectful parents.  The way it read, we agreed that Bryer stopped breathing while in my care.  We know that to be a fact.  After many prayers and to our surprise, Health and Welfare agreed to also accept and sign the document. 

The next step was to have our case legally closed by the judge.  We met at the courthouse in a little room to prepare for court.  As Jason and I sat at the table with the guardian ad litem and our case worker, the case worker turned to me and said, "Do you want to know my long term plan for you?"  I had gotten to know her pretty well over the course of our case, but I still didn't want to have a 'long term plan' with her.  I wanted to be done.  She went on, "I would hope that you two would do foster care sometime in the future.  Our system needs more families like yours."  Tears welled up in my eyes.  After all we had been through with her, she. saw. US. 

Our 4-month case with Health and Welfare closed April 21, 2011 - the shortest Health and Welfare case either of our attorneys had ever seen!  I believe it was by the grace of God that we received the case worker we did and that it closed as quickly as it did, although it seemed like forever. 

*********

Today I sat in front of Bryer's bouncy seat in my bedroom.  I relaxed, knowing all of this was over and we could get on with life again.  I gazed into her eyes and fell in love all over again.  I grabbed my camera and took a few pictures to remember how good this felt.  As I thought she was looking back at me and feeling the same, smiling, her eyes drifted ever so slightly.  I lost her precious gaze.  Her face was smiling at me, but her eyes were clearly not focused on me.  I changed my expression, thinking it would bring her focus back to me, but it didn't.  I moved my head to the side and she followed it, but didn't focus on my face.  It was like she could see my outline, but not my features.  The thought hit me like a wrecking ball to my heart,
'What if she can never see me? 
What if she can't see what her own Mom looks like? 
What if she never feels that spiritual connection I feel when I look into her eyes?' 
The tears fell down my cheeks at the thought of it. 

It's a blessing that God knows the whole picture of things and only gives us bit by bit as we are ready.  If I would have known what I do today, I wouldn't have been able to relax for a bit after our Health and Welfare case closed.  When God felt we were ready to handle it, He began a whole new chapter in our lives.  Little did we know that the things we learned through Health and Welfare would only prepare us for more. 

#22 -Compassion (Journal entries through the first part of March 2011)

Our new case worker is a 180 degree opposite of our first case worker.  She seems more compassionate and willing to work with us instead of threatening to move Bryer if we make any false moves.  She's still a worker of Health and Welfare, so we are ultimately still not fans, but at least we have someone to work with us now.  She suggested that we take a minimum of 6 counciling sessions, some together and some individual, just to have something to 'check off the list' and show we are making progress.  To date our councilor has thoroughly evaluated our parenting strategies, family standards, marriage values, and discipline techniques.  He said he can't find any reason to go on with counseling, other than to pacify the Health and Welfare requirements. 

During the time Bryer was in custody, she spent about 3 weeks with my Mom and then the case worker allowed us to take Bryer with us as long as my Mom or Jason's parents were 'supervising' us.  That included having them drive us places or coming along with us in our car.  I felt like such an inconvenience to our parents - that I couldn't be alone in a house with my own baby.  They never made me feel bad about it and were great about jumping through the hoops right along with us, as frustrating as it was and an inconvenience to their own lives.  Here's one example from my journal:   

Today I was at Gary and Cindy's with the kids.  Gary was 'supervising' us - sounds silly, doesn't it?  My father-in-law babysitting a grown woman and her children?  He wanted to run to the store to get a pop, just a few minutes away.  I realized that I would be by myself with the 3 kids for the first time in over 2 months and I started to worry.  What if the case worker or guardian ad litem decides to stop by while he is gone?  What happens if he gets in a car wreck and is gone much longer than a few minutes?  What happens if one of the kids gets hurt and I'm the only one here to attest to what happened?  There is such an un-needed fear here that wasn't here before.  I wasn't taking any chances and decided that if he was going to the store, then I would load all the kids up and we'd all go to the store.  He decided his pop wasn't that important.  I breathed some relief, but knew that eventually I would be by myself with my kids again - something that I never thought twice about before  and came very naturally - and now I was worried.  If they fall and hit their head, will the authorities blame me?  If they accidently cut themselves or have to get stitches from a fall off their bike, will I be blamed?  I have always believed in natural consequences and not 'padding' the world for my kids.  Now I feel like I have to pad them for my own sanity.  More and more stories are starting to surface about innocent people being turned in to the authorities - a broken arm at the doctor's office, stitches in the emergency room, normal 'kid stuff' that doctors mistake for abuse.  We're hearing about these first hand from people that had never talked about it before, or that are happening now. 

During the time that Bryer was with my Mom, they continued to go to church together.  The time came eventually that the doctor didn't see an immediate need to be constantly close to doctors and released Bryer to spend a day at home, further away, if my Mom agreed to go along to 'supervise.'  This was a huge step in our case (and met with lots of opposition) - for the doctors, the guardian ad litem, and our case worker to all agree to let us spend a single day at home - and the first time in nearly 3 months we had all been together as a family in our own home.  We went home to watch Hunter's basketball game and to re-group our laundry, toys, supplies and then head back to Jason's parents' house.  It was so good to be back together, but bittersweet in having to leave and be split up all over again. 



Sisters in red to show their school spirit at Hunter's basketball game (There are only a few of Bryer's smiles at this stage that were caught on camera.  This was one of them.)   

Our community has been so supportive.  It was good to be at the game and see everyone who has been praying for us.  I feel so blessed to be a part of this small community.  Today I ran in to the little store in town to grab a few things and noticed a can at the checkout stand.  It had Bryer's picture on it and told a little of our story and asked people to donate money.  In my mind I had to look twice, feeling a big sense of denial.  That couldn't be us - but it was.  Here we are, those people with a picture of our baby on a coffee can for people to donate.  That only happens to other people, doesn't it?!  As I stood there in the line to pay, I felt a overwhelming sense of humility.  Here we are, feeling like we're at the bottom of the bottom and we have this amazing community to rally around us.  I'm not one to accept help.  Man, am I ever NOT one to accept help.  I'd much rather give it.  MUCH rather give it!  This was all done without our knowledge and we learned people have been donating for weeks, with our friends rolling coins and saving up the money to surprise us.   On our way out of town we stopped to gas up and when I went in to pay, I found another can sitting at the checkout at the gas station.  Same picture.  Same story.  And again, I felt that denial that we would need someone's loose change.  And then a feeling of graditude came over me.  The Lord can't be here with us in person right now, but he's sent amazing people to be His tools.  None of them know that our money in savings is running out by paying for attorney bills.  With Jason and I having to have separate attorneys, our funds go twice as quick.  Then we make a day trip back to our little town - with the lowest unemployment rate in the state - and find people donating their change to make a difference for us.  It's not really about the dollars and coins in the can.  It's about the feeling we get to know there are people behind us. 

If that wasn't enough, we have been blessed by a sweet 3rd grade boy in our community.  Their family was acquaintances of ours, but they took our trial to heart and now will forever be our friends.  This boy is friends with Hunter.  I don't know what his mom has told him about our case,  but he knows that Bryer has been in the hospital and he wanted to help.  Each year he uses his own birthday money to help others.  (Really!  What kid uses his own birthday money to donate or help someone else?  He's gotta be amazing and have outstanding parents!)  During the time of a birthday that most kids can't wait to receive a few extra dollars (mine included!), he finds ways to bless the lives of others.  In the past he's helped out with everything from kids in the hospital to animals in the shelter.  This year he chose our family.  He didn't just donate his birthday money straight to us - he motivated others to help too.  He started right here in our small elementary school.  I love this because it's here and now on his own level with people he mingles with everyday - not being shy or discouraged about how small we are or how little our community has.  He wasn't flashy about it or looking for recognition.  He put containers in each of the classrooms and offered a challenge to the school for the class that could raise the most money for our family.  He used his birthday money for a pizza party as the reward!  Really, birthday money from a 3rd grade boy.  At that age, birthday money is sacred!  I feel so blessed by this young boy's example of selfless service.  It's a completely humbling experience to be on the receiving end of these random acts of kindness.  On one hand it is so humbling - almost to the point of embarrassing - that so many people have wanted to help.  On the other hand, it keeps us going to know there are people behind us.  It's not about the money.  It's the support we feel to buoy us up and know that the miles between us as we stay with family doesn't change the support we feel. 

Of course his example and desire to serve spread.  The kids at school, and especially in Hunter and Sawyr's classes, knew that they had missed quite a bit of school and that their baby sister was in the hospital.  The kids and teachers brought change and bills and gathered them together in their class containers.  They raised over $1000.00 from the inspiration of one boy!  I'm so overwhelmed with so many feelings and tried so hard to be a gracious receiver. 

When it's so much easier to give, I have to remember that someone is always on the other end of receiving.  That just happens to be us right now.  I would not want to turn this boy away in wanting to serve, as humbling as it is.  I love the feeling of making someone's day or going above and beyond. It's much easier to be on the giving end.  I wish that I could erase it all and go back to teaching as an Art Mom or giving books away to Head Start families.  It's so hard to accept service.   If someone wasn't on that receiving end, I wouldn't get that fulfillment.  Today, I feel blessed to learn the act of receiving. 



Coming to bring his fundraising efforts to Bryer 

******
We had several court hearings during the time Bryer was in custody.  One of the main purposes was to check up with our case plan - to see the progress we were making in checking things off our list.  Our new case worker always had positive things to say about us.  The guardian ad litem was a little more reserved in her words, but felt we were 'moving along,' as was she in doing her own medical research.  At one of these hearings, they gave the ok for me to stay at my Mom's during all daytime hours.  I was not to spend nights there though, so I would take Piper and Walker with me and stay at my Dad's a couple miles from my Mom.  Then in the morning we'd wake up early and head back over for the day with Bryer.  Jason stayed at home with Hunter and Sawyr so they could go to school.  All the shuffling of kids and their stuff and pumping milk was exhausting. 

Jason and I were advised at the beginning to hire separate attorneys.  We hoped that the judge would release Bryer to Jason, if not to me.  That was never the case.  In fact, the judge pointed out that Jason was, by definition, considered a neglectful father because (#1) he couldn't tell the court what happened with Bryer that day, and (#2) he was willing to stand by me to support me.  Here's part of my journal entry after one of those days at court:

I have learned that the world will tell us how to live, who to love, what to stand for.  For this court, it would 'work out' better if Jason and I were on different sides - if he opposed me.  They would easily release Bryer to his care.  I am not interested in listening to the world.  Having standards to live by are often not the easy way out.  Jason and I are both dedicated to our marriage and our family.  That comes first.  I have believed long enough that if we are doing what God wants us to be doing, then He will find a way for things to work out.  His ways are always better than the world's ways.  None of this makes sense if you look at it from an earthly view - the here and now - but if I take into account the big picture of things - my priorities - our priorities as husband and wife and as a family - it becomes so clear.  There are a million reasons the world would have us be apart.  But the most important reasons are to stay together and keep fighting for our family.  We have to stick together.  There's just no other way.  We are better and stronger together than we are apart. 

*******

During this time, Bryer also transitioned from receiving therapy through the hospital to the therapists chosen by Health and Welfare through the Infant/Toddler Program.  Jason and I said we would just go along with the program until Health and Welfare was out of the picture.  They said it 'looked bad on us' if we didn't use their services for Bryer.  Here's part of my journal from the day we met Bryer's Occupational Therapist for the first time:

My Mom has had to go back to work, but Health and Welfare isn't ready for us to go home, so we're staying with Jason's parents now and can have Bryer with us full time.  It is so relieving to wake up in the middle of the night to a crying baby ready to nurse than an alarm clock to tell me it's time to pump.  I'm thankful for the extra help while we transition to having Bryer back with us.  She cries a lot as her poor little brain is recovering.  The only way to get her to stop is to nurse.  Her crying hits at the most random times for the most random reasons.  It could be that Walker runs through the room and makes a loud noise that startles her or Piper kisses her one too many times.  Or she's too hot or too cold.  Simple things will send her into a crying fit that she can't stop unless I nurse to calm her back down.  It could be the chaos of having cousins over or even just sitting around the table trying to eat all together. 

Her Occupational Therapist (OT) visited today for the first time.  She makes home visits and tries to see babies in their own home environment.  She is a thin lady who wore cute clothes and her haircut complimented her face.  I don't know what I was expecting from Health and Welfare.  In the most non-judgmental kind of way, maybe I was expecting someone like our first case worker with tattoos and piercings?  This lady was very nice and easy to talk to.  I was nursing when she walked in (the new story of my life), so I couldn't get up to introduce myself.  We talked a little bit and she was able to meet Bryer.  At one point in the visit, she wanted to see what Bryer could do.  I laid her down on a blanket on the floor and let her see how her body felt.  Bryer's muscles feel kind of tight, and when she gets mad, she arches her back and her head off to the right side.  She didn't want to be on the floor and with all the noise from people coming and going through the room was too much, so she started into one of her crying fits.  I scooped her up and sat back on the couch to nurse again to calm her down.  I showed her OT how much her arms relax while she's nursing and asked what therapy I should be doing while we were in that position so often during the day.  She suggested a few things, along with offering opportunities to be on the floor on both her back and her tummy.  After a while of sitting and nursing and visiting, I had to use the bathroom so I had Jason's Mom hold Bryer while I got up.  Cindy later told me that the OT seemed impressed with me and while I was gone, asked, "Is she a die hard or what?!"  She was referring to my dedication to nursing maybe?  At first thought, I didn't know what she expected.  Then I was reminded of what she probably thought.  She's probably seen the hospital notes, the history on Bryer, all the background.  She was expecting a child abuser.  For whatever reason, I was really hoping this one would be different.  I'm so tired of feeling like I'm on the defense.  I'm not out to be prideful or 'prove' people wrong.  I'm just not that kind of person.  They will get to know me and see me for who I am.  I will be who I am through and through.  An open book.  The child-development-major I was in college and they will see.  I don't really have to do anything else than be myself. 


At 4 months, this took a lot of effort for Bryer to not only be happy on the floor, but also be on her tummy, and also hold her head up without bonking it on the blanket.  There was no excess noise, no extra people around, her diaper was changed, she had a fully tummy, and the conditions were perfect for her to be content in this position and not go into a crying fit.  It was a lot of work for her at this point and something we got very excited about! 

Even though it's one step closer, it's so hard to be here at Jason's parents and know that life is going on without me at home.  Jason is working full time and helping with homework and making dinners and the laundry and everything else I should be doing.  I just want to be together.  All 7 of us.  Under 1 roof to say prayers together at night and hear about how my boys' day at school went and help them with their school projects.  I should be the one sweeping up and making breakfast.  I'm trying hard not to fight in my head about what things should be like.  It helps if I count my blessings of where I'm at now instead of hoping for where I should be.  Be positive.  Be thankful.  Show gratitude.  So....
I am thankful to have Bryer with me now 24/7.
I am thankful to have the support of Jason's family to let us stay here.
I am thankful to have Piper and Walker with me, even if Hunter and Sawyr are away with Jason.
I am thankful for a supportive husband who is such a spiritual rock to our family. 
I am thankful to have a new case worker.
I am thankful for a sincere occupational therapist.
I am thankful for my in-laws that cook and clean up while I feel so unhelpful nursing on the couch.
I am thankful for cousins for my kids to play with.
I am thankful for my parents who come take Piper and Walker to the park or out to lunch to get them out of the house.
I am thankful to God for answered prayers and to protect our family while we are separated.
I am thankful for the standards I live that will hopefully make it easy for people to see the kind of person I am.