#20 - Frustration (Through January 31, 2011)

Days like today I wonder how much more can a person physically handle.  After our family meeting with Health and Welfare, the case worker told me I was able to see Bryer at my Mom's for feedings.  I feel so sad that they think my most important role right now is 'just' feeding.  Feeding time is so important - for the nutrients Bryer takes in, but it so much more.  It's also for our bonding - the connection between us.  It's important for me to feel it.  Really feel it.  And equally important for her.  That melt-my-heart goodness that comes from feeding my baby and rubbing the top of her fussy head or fiddling with her tiny, little fingers while she eats.  Feeding her has become such a sacred experience - because that's the main purpose of our visits.  As much as it is nourishing for Bryer, that time with her is nourishment to my soul.  When I rub her little head held so softly in the crook of my arm, I wonder how in the world someone could hurt an innocent baby.  It makes me physically sick to my stomach to even think of the idea of someone hurting a newborn.  It makes my stomach do flips and turns.  The same uncomfortable feeling when the hospital staff reviewed SBS with me when each of my 5 babies were born.  It was their duty - one of the items in their check-off list for post-partum moms.  Still, every time, it was a yucky, sick feeling to even have it enter my thoughts.  Now to think I am being accused of this horrible act.  So my tears fall.  Not because I'm mad or frustrated.  Just because I am so hurt to my core that someone would accuse me of this - doctors.  Trusted doctors.  The best in the area.  So sure of themselves.  "To a high degree of medical certainty' they say.  When I feel so hurt and my pain is unbearable, I think of my Savior.  Did He feel this same way when He was falsely accused?  Did He physically hurt?  Was His frustration also replaced with deep sadness like mine?

Before this experience, I read my scriptures.  I went to church.  I could recite stories to my kids of Jesus.  I felt so strongly of the standards He wanted me to live.  I had a strong testimony of that.  I knew so much about Him.  But I remember a lady speaking in church that said she took walks with Jesus.  Was my life's journey my walk with Christ or was something inside still missing?  It's not enough to know about Him.  We have to know Him.  Through my pain and struggles and deep sadness, I feel like that missing piece of the puzzle is filling in now.  I'm able to feel a sliver of what He felt so long ago.  I can feel a little of what he felt - His sadness, His disappointment, His broken heart.  Because He's felt all that, He can understand me.  He can know exactly how I feel.  This experience is so painful for me to endure, and I still have to go on with normal life with 4 other kids.  It's so comforting to know that someone is walking with me that knows how I feel.  He doesn't take it away or make it all better or fix it all back to normal, but this walk is not so lonely for Jason and me. 

With all that going through my head, we returned to Jason's parents for the night and then sickness hit.  Literally.  Piper and Walker started in about the same time.  Throwing up and washing sheets and more throw up and baths and more throw up and wiping up floors.  I was up late.  If I wasn't with one of them, then I was cleaning up the last round of puke.  I got both of them back to sleep and put another load in the wash.  I don't know what time it was.  Late.  I went to the bathroom and closed the door.  I bowed down on the bathroom mat and bawled.  I want out.  I want to be done.  I want sleep.  I want my baby back.  I want healthy kids.  I want my husband and I under one roof.  I want to see my oldest play his basketball games - not just hear about it later.  I want to go back to the days I thought were hectic.  The days that running kids to sports practices and making dinner and folding clothes and washing dishes  and helping with homework was the hardest part of my day.  I don't want to drive 30 miles to feed my baby.  I don't want to wash another set of sheets.  I want to lay down next to my husband and sleep next to him - not call him on the phone to tell him good night.  I cannot give anymore.  I am so toasted and broken and tired.  How much more can one person - one family - take? 

January 29, 2011
I need my husband.  So desperately.  He's a physical rock to me.  As much as I want to be with Bryer, if I go, then I have to take Piper and Walker with me.  I don't feel like putting her in the vicinity of puke-germs and risking her getting sick with all the recovery going on in her brain.  And my Mom can't get sick if she's the one taking care of Bryer.  So we decided to come home for the weekend.  Air out my in-law's and give them a break.  Get kids better and then start fresh again Monday morning. 

January 30, 2011
Today I stayed home from church with sick kids.  That was the bad news.  The good news was that my Mom took Bryer to church!

I made a hard decision just after I graduated from high school.  A decision I knew was right, but that my family was not a fan of.  I chose to be baptized in The Church of Jesus Christ of Latter-Day Saints.  When I told each of my parents, they cried.  I had hoped they would be happy for me, but I knew they probably wouldn't be.  They had raised me to make my own decisions and even though they didn't agree, they accepted my decision.  It was a choice that had been building for two years as I searched for a church home.  I knew there was more out there.  I went to youth groups and church services and Sunday School lessons and asked questions.  Lots and lots of questions.  I prayed about my options.  I worried about what my family thought.  They both worried that the church would change me; that somehow our relationships wouldn't be the same.  And that once I got married and had kids that there would somehow be a separation.  The choice to be baptized was one of the hardest and best decisions I have ever made, even though it was not a happy time for my family. 

Now, with Bryer in my Mom's care - they went to church together.  Not at my Mom's church, but at the church building close to my Mom's house that's The Church of Jesus Christ of Latter-Day Saints.  When my Mom told me, I asked her why she decided to take her there.  She said, "I just thought that if it were a normal Sunday, then Bryer would be with her family at your church, so if I am trying to help, then that's where Bryer should be." 

My tears got watery on the phone.  I hoped my Mom wouldn't notice the crack in my voice.  It was completely unprompted by me to suggest that she take Bryer there.  It's not a place my Mom is completely comfortable, but she was willing to step outside her comfort zone and serve in a way that we completely appreciated and was totally unexpected. 

This simple act made me think today how I serve.  Do I serve others how I think the person needs to be served or do I serve the way that they need to be served?  I am thankful for my Mom.  So thankful.  She is an answer to my prayers.  Funny that when I was a little girl, I wrote in my journal, "When I'm a Mom, I think I will have my Mom just raise my kids because I don't think I could do as good of a job as she does."  She continues to serve how those around her need to serve - not how she wants to serve.  When Bryer was born, she came to stay for a while and help with the older kids.  I'm sure she would have rather snuggled our newborn and relaxed on the couch.  Instead she took my older kids for walks to wear them out, made crafts with them, cleaned up the house - and let me sit on the couch and snuggle Bryer.  She took pictures of Bryer and me to remember how fast that newborn, curled-up phase passes so fast.  I am so thankful for those first few days to enjoy Bryer without having to do much else but enjoy her and soak up all her newness before it passed. 

How ironic that she now has Bryer.  Aside from being with us, there is no better place for Bryer to be.  Now my Mom is the one snuggling her while Jason and I juggle our other kids.  I'm anxious to start a new, healthy week and see Bryer more at my Mom's! 

Hindsite is 20/20...  There were deep connections made between my Mom and Bryer that started at this point.  They continue to have a very special relationship.  Although I was 'forced' to share my baby, I am thankful for the relationship Bryer and my Mom have.  As I said in the intro, "There have been plenty of briars.  I have learned that the best way not to get tangled and caught up in them is to remain calm and look for the good in the situation."  Once Bryer was with my Mom, it got a little easier to look for the good.   

January 31, 2011
We started a new week.  I'm counting healthy kids as a new blessing that wasn't here last week.  Who knew the lack-of-puke could be such a wonderful thing?!  Jason's family helped out with Piper and Walker today, just to be sure that the sick-bug had passed before I take them back to see Bryer.  I'm so thankful for Jason's side of the family.  They have been a huge support for our entire family.  They have physically called family meetings to put plans together, have physically cared for our older kids, emotionally cried with us, and been for us spiritually as we fast and pray for things to work out.  I've said before, I don't know what people do when they are tied up in a mess like this that don't have family support.  Actually, I do know what they do.  They probably crumble.  When we have not had the strength or mental capacity to think things through, Jason's family has taken over.  In the times I just want to cry, they are logical and composed - just like my husband.  He's so steady and focused through all the pain he feels too.  We are part of a whole family.  They have their own problems that they have dropped to come to our rescue.  They have their own work, their own kids, their own activities.  They clear their schedules to keep our kids, make phone calls, fill out paperwork, interview attorneys with us, do whatever it takes.  This is not just a baby that has been taken away from me.  Not just Jason and I.  This is a piece of our whole family puzzle that is missing and we have all the support we need to fight to get her back.  That's what family is all about - fighting for each other.  Standing by in the sadness to wait on the happier times.  In the middle of this trying time, I continue to feel so blessed by these people around me! 

I spent most of the day today at my Mom's.  Bryer was pretty fussy this afternoon.  She didn't want to eat.  Didn't want to sleep.  Didn't want to rock or be layed down.  She started to get more and more worked up and couldn't be consoled.  Finally late this afternoon I called the pediatrician - a doctor I had never met that the foster mom had been taking Bryer to.  His office looked up her file and said I needed to call the neurologist.  So I put in a call there and waited for a call back.  Bryer cried harder and harder.  I started thinking of her cries the weekend before she went to the hospital.  Could something be wrong now, like it maybe was then?  It wasn't like her to not want to nurse, but I haven't been with her longer than a couple hours since the hospital either.  The foster mom told me she had fussy days, but she didn't tell me she couldn't be consoled.  I felt so inadequate, not knowing what to do to help my baby.  We had felt so close and connected during our short visits.  Now she was so inconsolable.  I tried more feeding, the binkey, a bath, a diaper change, taking her clothes off, putting different clothes on, walking around outside.  The neurologist finally called me back and said I needed to call the neurosurgeon.  I was fine with my composure for Bryer, but my frustration with doctors grew.  We hadn't had any contact with the neurosurgeon since the hospital; he had been the only optimistic one about Bryer's recovery.  As much as I would have liked to get his outlook, I didn't see why I should be calling him.  I just wanted her checked over to make sure nothing was wrong.  I could deal with crying if I knew she was physically okay.  I didn't want anything more 'pinned' on me.  I called anyway and they directed me to call the pediatrician back to refer us to their office.  I explained my frustration and phone tag and asked them to be sure that the pediatrician is the one I need to call.  Ugh!  I called the pediatrician's office back - tired and frustrated by lack of answers and running me in circles for the past 4 hours while Bryer was obviously in pain.  I wasn't going to have them call me back.  I didn't want to leave a message with the receptionist.  I just wanted an appointment and I let them know.  They finally told me I could either make an appointment for the next day or go to the E.R.  If there is something wrong with Bryer, then I want her to be seen soon.  The thought of walking back into the ER scared me, but I needed to be sure that Bryer was okay.  She was to the point of screaming now inconsolably.  So, my Mom and I packed up and went to the E.R.  We got to the emergency room and were led to a room.  They asked us to strip Bryer down and then left us to take care of it.  As soon as she was naked and layed on the table of crunchy paper, she calmed down.  My Mom and I watched her in awe as she squirmed her little body on the crunchy paper - and then smiled at the sound she created.  I felt silly sitting there.  So worried until that moment.  I had let my fear get the best of me.  I had forgotten to pray.  I felt defeated, but relieved at her smiles.  As we waited for the doctor to come in, Bryer nursed like a champ.  I wanted to slink out and pretend I had never worried enough to make it to the E.R. 

About that time, the doctor walked by our room.  I did a double take and stuck my head out the door to make sure what I had seen.  It was the same doctor that had intubated Bryer at the smaller hospital after I found her not breathing.  I walked back in the room and asked my Mom to hold Bryer while I went to talk to the doctor.  It wasn't my personality to confront people - even in a non-confrontational kind-of-way.  I had to figure out what to say.  How to introduce myself.  Maybe she wouldn't even remember me. 

I walked down the hall and found her at her desk reading notes into a recorder from her last patient.  I stood far enough away to give her privacy, but so I would know when she was done.  I set the recorder on my phone and put it in my pocket, always looking for clues from that day.  Then I walked up and introduced myself.  I didn't get very far into describing who I was when she put her hand on my arm and apologized again, like she had that day.  She said she did everything she could do that day.  She admitted she was a frazzled mess and said she's been praying for 'that baby' and our family.  She was glad to hear Bryer made it and then we said our good-byes.  It wasn't the conversation I was expecting.  I wanted to ask her about the scans done before the intubation that didn't show a fracture.  And then the scans done at the bigger hospital that showed a fracture.  I wanted to ask her about Bryer's heart rate changing during intubation that showed distress.  I wanted to ask her so many things.  But she was on to her next patient and I was left in the hall with all these unanswered questions.  I went back to the room with my Mom and Bryer and waited for the doctor.  He eventually came in and told us the obvious - that Bryer was okay.  He also said that when a brain is recovering, the baby will be more uncomfortable and could be fussy very often.  He decided to order stool samples, just to be on the safe side.  And then he sent us on our way. 

I had called our case worker on the way to the hospital, just to let her know what was going on.  She got word from the doctors office and was worried about me 'losing it,' so she called to check on me to make sure I was okay.  She didn't say much about whether Bryer was okay.  Bryer is the last person I would get frustrated with.  It's the rest of the doctors and government agencies I get frustrated with.  Me 'losing it' was never an option.  Crying - yes.  But not losing it. 

I'm tired of hospitals and doctors and am getting ready for bed tonight wondering how my life has gotten flipped upside down.  I tried to do more research tonight after I got back to Jason's parents' house and got kids in bed.  Everything I find is about people being convicted or people serving jail time or people on trial for SBS.  That's not a good feeling to go to sleep with.  I'll start all of this all over again tomorrow... 

(Note:  My journal is more sporadic once Bryer was moved to my Mom's.  Once I was able to spend more time with her, that meant less time to write.  My next journal entries will move 'faster' through time.  More blessings to come...  Thanks for following.)