2.27.2017

Slowly But Surely

It has been 4 months since my first cycle of bipolar disorder.  The fact that I've made it this far through 20 cycles is a complete miracle, especially remembering that, at one point, 6 more weeks until a doctor's appointment seemed impossible.

It has been 4 months since my world literally crumbled beneath my feet and everything stopped.  I stopped cleaning, doing preschool with my daughter, leaving love notes for my husband, going visiting teaching, doing consistent scripture study, attending the temple, exercising, doing my hair, reading, trying to make new meals, blogging about my family, doing any hobbies, etc.  It all stopped.  I really didn't know how I would pick myself up and move forward, and I wasn't sure that I even wanted to try to move forward again.

I didn't do much for two months except blog on here and try to keep up with taking care of my family.  Blogging was the only thing I could hold onto that wouldn't slip out of my grasp.  I knew I needed to start doing other things, but I couldn't.  It all hurt too much and served as a painful reminder that my life had changed dramatically, that I had changed.

At the beginning of January, with the painful memories of the past couple of months behind me, I decided to start trying again.  It started with going to the temple.  I was completely terrified and overwhelmed about going.  Something about driving 2 hours, sitting with my daughter in a random place surrounded by random people, then going into the temple and completing all of the necessary steps, followed by driving another 2 hours home seemed impossible.  But after a few failed attempts, we finally went.  I was scared for days leading up to it and wondered if I could actually do it, but I DID!!!  And the best part was that I felt good for 2 days after going.  Blessings!  We went back to the temple in February and plan to go again in March.  Temple attendance is officially back in my life.

Then, I decided to add back in scripture study.  I had been doing a little bit here and there, but nothing consistent or beneficial.  Sometimes I would try to read and would get so overwhelmed that I would cry for 30 minutes or an hour without even opening the book.  It was pathetic and frustrating and discouraging, so I stopped doing it altogether.  But after a series of very fortunate events, I was able to find the strength to read.  I only cried for a few minutes before exerting all the power I had to open the book and read.  I read an entire chapter!!!  That's the most I had read in at least a month.  The next day, I read again.  It was easier, and I felt blessings flowing into my life.

Next, I wanted to add visiting teaching.  I got a wonderful new partner who has been a great support and strength to me.  I was really overwhelmed about calling to set up appointments, but my partner's love and confidence in me gave me the strength to do it.  Last month, we did ALL of our visiting teaching.  I hadn't visited anyone since all of this started, so for us to visit/write everyone was truly miraculous.

I've slowly but surely tried to crochet again, do some activities with my daughter, write an occasional note for my husband, exercise sporadically, do my hair equally sporadically, and clean.

Things are still very different, and I don't know if they will get back to being normal again anytime soon.  But this I do know--

It has been 4 months of learning about love, forgiveness, acceptance, and faithfulness from my husband.

It has been 4 months of recognizing that my daughter loves me for who I am, not for what I do.

It has been 4 months of miracles, blessings, and tender mercies shining through the pain and darkness.

It has been 4 months of feeling the humbling and empowering truth that I can find joy through my trials.

It has been 4 months of being inspired by the beautiful lives of others and their bravery in choosing joy, forgiveness, and hope through darkness.

It has been 4 months of feeling the enabling power of the atonement working in my life, strengthening me to slowly but surely move forward.

It has been 4 of the very hardest months of my life, but somehow looking back, I just feel thankful.

2.24.2017

What Mania Feels Like

Several people have asked me questions about what my mania feels like and how it affects me, so I thought I'd write a boring, informative blog post about what experiencing mania is like for me.

My mania is not quite like traditional mania.  It has some similarities (energy, racing thoughts, trouble sleeping, etc), but it is also very different (mainly that I do not feel enjoyable during mine at all!).

It starts with the right side of my jaw tightening and getting a little uncomfortable.  It's not painful really, just annoying.  Sometimes this part starts before I have actually switched over to mania, so I know the switch is coming soon.  Then, the tightening spreads to my throat and chest.  Breathing gets very painful, but strangely only on the right side.  It feels like there are sores all up and down the right side of my airways, so air coming past makes it sting.  I really don't know what causes this at all.

Next, the tightening intensifies to feeling very uncomfortable and painful in my chest.  I usually describe this to my husband as my heart being on fire.  It's not in one place in my chest or in the same place every time, so I usually describe this as my heart, but it's not, because it actually happens on the right side.  My throat muscles tighten and breathing becomes even more difficult and painful (it burns like nothing I can describe).

After a couple of days of experiencing this, I start to get this feeling of energy that starts in my toes and feet.  It feels like there are little microscopic bouncy balls bouncing in my veins at super speed.  It makes my feet and legs feel numb and tingly, and I shake.  At first, it is a choice to shake, because shaking relieves some of the pain in my chest and the energetic feelings in my toes and feet.  But after a little while, I can't choose it anymore.  At the point that I can't stop shaking even if I try, my whole legs are shaking.

At some point, everything intensifies to the point that I have to lay down in bed and let it all out.  This is when everything shakes, including my hands and arms.  I'm sure it looks almost like I'm having a seizure.  My hand muscles get so tight that my fingers almost freeze in their current position and lock up.  This very intense part of it is the worst and feels completely unbearable.  It lasts anywhere from 1-4 hours.

When the worst of it has passed, it's like everything winds down the same way it built up.  My muscles always feel really sore, because of all the shaking and tightening, but they are able to relax some.

The psychiatrist said that my symptoms of mania match more of a panic attack (which I would agree), except that panic attacks don't last for days at time and they don't cycle, so we're sticking with calling it mania for now.  Mostly because she tried to have me take an anxiety medication, and it made the mania MUCH worse.

I do not like mania at all and would not consider it pleasant in any way like some people feel with mania.  Honestly, I think of mania as going through hell, because that's the best way I can think of to describe the depth of pain it causes.  This is the way it has been for the last 20 cycles, including before I started taking medication, so at least I know it's not an adverse reaction to the medicine.

Although the mania is much more difficult to deal with than the depression, I feel like I grow so much closer to Heavenly Father during this time.  It's something that is basically impossible to understand without feeling it (I never would have imagined a pain like this existed unless I felt it), so I can't rely on anyone else besides Heavenly Father to understand my pain.  And I don't feel like I can be around anyone, including my family, when it gets really bad, so I am only left with the ability to pray.  But I know that I am strengthened and supported through every difficult mania I face, and someday all of the pain of my broken brain will be healed!

2.19.2017

Loving the New Me

Some days I get the sweet and refreshing taste of what life used to be like and what I hope it will be like again soon.  Today was one of those days.

Although I didn't feel very well emotionally, my spirits were high and hopeful and cheerful.  I had a great desire to serve others, to reach out, to smile, and to leave a good mark on this world.  I felt so full of faith and optimism, almost as if everything was back to normal, and I was my real self again.

Over the last few months, I have often felt the painful realization that I am not who I once was.  When I meet new people, I feel this constant desire to explain who I really am, that this isn't me and that the real me is simply buried under the pain of bipolar disorder.  When I interact with people who I've known for a long time, I find myself apologizing for not being the same as I used to be.  When I go places where I don't know anyone, I want to stand up and tell everyone that this isn't me, because I don't want them to assume that the darkness surrounding me is normal for who I am.  And don't even get me started on the absolute panic I feel about moving somewhere new and meeting all new people, none of which know that who I am now is not the same as who I used to be.

I've spent hours crying over this new life that I am living, one that I didn't choose and one that is so different from the life I lived before.  I have spent more time than I can count worrying that people will judge me harshly for not being able to do everything that I could do before.

But today my perspective changed.  No, I'm not who I once was.  In fact, I often feel like I am beaten down and covered with the wounds, weariness, and scars of this fight.  But today I'm taking a step forward in faith.

I've decided to love this new me.  I may be different now, but I can choose to accept the change and to let go of the heavy burden that who I am now is worse than who I was before.  In fact, I have chosen to recognize that this new me is beautiful with and because of all the scars of these last few months.

I've decided to recognize and love that this new me is full of compassion and awareness of others, overwhelmingly thankful for days of light, and deeply committed to helping others through their darkness, all things which would not have been a part of who I am becoming without the pain of bipolar disorder.

I love who I am on the good days and cherish these days like never before, but I am making a greater effort to love who I am on the days of darkness, sorrow, pain, and fear.  Because it's the scars that are allowing me to become a more beautiful me.

2.16.2017

Letter to Myself

I had something else that I wanted to blog about today.  But then, the light broke through the pervasive darkness, and I knew that I had to write about how I feel.  If not for anyone else, then for me, for the future me who wonders if light even exists anymore.

These last few weeks have been more challenging than I ever knew possible.  It's like every time I think I have reached the lowest point, I find out that it's possible to drop lower.  These last few weeks, I battled non-stop darkness.  You probably couldn't tell if you saw me, because I tried really hard to hide it, but inside, I was pretty sure that there was no point in going on, that I had lost the fight, and that I wanted to give up.  I desperately wanted to tell someone how I felt, but there were no words to describe it, so I simply held on and watched as all the remaining light drained out of my life.  The episodes came and then switched quickly and ferociously, but the thick cloud of sorrow and hopelessness stayed around all the time.  I couldn't shake it.  I couldn't snap out of it.  I couldn't do anything about it.

Some days, I would take a nap and wake up to find my body paralyzed for 15 or 30 minutes by the heavy weight of darkness.  I physically could not move.  Other days, my whole body would viciously shake and convulse from mania.  I had no clue how to cope with the drastic and extreme fluctuations in my mood and my energy levels.

On Sunday, everything came crashing down on me.  At church, my mind was literally screaming repeatedly that I wanted to die.  I had no energy left to fight it.  I didn't want to get better, and I didn't care that I didn't want to get better, because I was sure that I would never make it through.  The darkness was swallowing me whole, and it seemed like no force was strong enough to pull me out.

I prayed for several nights in a row that Heavenly Father would allow me to die peacefully in the night.  I begged that it could be His will.  I told Him that I could not give any more and that getting better was no longer an option for me.  Every morning that I woke up after praying, I felt a little disappointed, but I kept holding on, even though I had no reason to.  I didn't want to, but I did anyway.

I got priesthood blessings, I talked to some people about how I felt, I prayed, I asked others to pray for me, and I spent lots of time with friends during the day and family in the evening, but nothing was working in bringing a small flicker of light into my pitch black world.

This morning, however, I woke up to find that something had flipped the seemingly broken and unflippable switch in my brain.  The light was back.  I don't know what did it.  I wish I did, because then I would know to do that every time.  But the light is back, nonetheless.  I don't want to sound pessimistic, but realistically, this light probably won't be here for very long.  So while it's here, I'll write a letter to myself about what I want myself to know next time this happens.



Dear Shantelle,

The desire to give up is not your own and will not last forever.  In the depth of darkness, it seems that there is no way out and no hope, but there is always hope!  There is so much to live for, including your beautiful family who loves you and needs you, even with these struggles.

The light will always come again!  Unfortunately, it's not predictable, so I don't know when, but it will.  And the light is glorious, beautiful, breathtaking, incredible, and definitely worth holding on through the powerful darkness that sometimes has to come first.  It really will come again, even when it seems like there is no way out.

Letting the darkness destroy you is a choice.  Do not give up!  Hold on.  Keep trying.  Trust in future light.  It will come.  I promise.

Don't forget to look for miracles.  They are everywhere.  Even if you can't feel God's love, it is there, and the evidence is in all the little tender mercies and miracles that surround you.

This is hard.  It's meant to be hard.  But you are growing stronger every day, and you can do hard things.  Be thankful for the struggle, because it is what is allowing you to become.

Someday this will be over.  I wish with all my heart that I could tell you when it would all get better, but all I know is that it will.  Don't stop trying to get better.  It's worth the effort and the wait.  You're worth it.

You will get through this.  You have an army of people surrounding you who love you and support you and are willing to help you when you need it.

Most of all, the Savior is here for you.  He understands you completely and loves you perfectly.  He will strengthen you, when you feel so weak.  You can do all things with Him.

Much love,
Shantelle

2.14.2017

True Love

My love story started 3 1/2 years ago in the beautiful Nauvoo Temple.  On that hot, but not humid, September morning, my husband and I stared into the mirrors facing each other on opposite walls in the temple and looked into eternity.  We thought we knew what love was, or at least I did.

Our sealer read this poem, and everything about the new life we were starting together seemed dreamy and perfect.  I thought I knew what it would be like to go through storms and tempests together, but now I realize that I had no clue.


I find it fascinating that our sealer read a poem about light and lighting each other's flames, since my world has suddenly been inundated with darkness.  I also find it fascinating that the darkness has taught me what true love is.

I don't often feel the emotion of love I used to feel.  In fact, many times I feel like being alone, and I have to push myself with everything I have to put effort into my family, mostly because I don't feel motivated to put effort into anything.  I feel darkness where I used to feel loving and caring and happy emotions.

But in the places of my heart that used to hold love and now hold darkness, I have learned that true love is not an emotion.  True love is an action.  I show my love for my family, and I prove that love to myself, by doing the dishes when I really don't care if they get done, by using the good days or moments I have to do special things for them, and by holding on when I wish with all my heart that giving up could be an option.

I have felt my husband's love when he has held me as my heart shatters, when he has come home from working all day and made dinner because I was struggling, when he has promised that he will stand by me through my darkest moments and never leave, and when he tells me that he feels my love over and over and over again when I'm upset that the emotion of love isn't there.

Our love story is not what it used to be or what I thought it would be.  But for some reason, I don't want to go back.  I do hope that we will find a way to remove this darkness from my life, but I'm so thankful that, no matter what, our deepened love will remain.  And I will forever be grateful that I am married to a man whose light and love shine brightly through darkness.

2.13.2017

One Cup of Doctor Update with a Tablespoon of Joy

Today was my long-awaited appointment with the doctor.  For some reason, I always get this unrealistic expectation that the doctor will tell me, "If you just do this, it will all go away soon" or something like that.  I look forward to these appointments more than almost anything right now, and I always hope that someone will know how to take this all away.  But this is never the case.

These kinds of medications take weeks to take full effect, and honestly, the doctor doesn't know whether it will help or not until I take it.  So she made some adjustments, and now I will wait to see if it helps.

She changed my zoloft to taking it at night with the hope that it won't make me so sleepy.  She also increased my dose of lithium, because the level of lithium in my blood wasn't within the therapeutic range, and it hasn't seemed to help yet.  If this increase doesn't help, she has the plan to put me on another medication to help with the mania, and she is willing to do this over the phone before my next appointment, which is April 10th.

To tell you the truth, I am exhausted.  I am just finishing cycle 18, and my most recent 7 cycles have been crammed into the last 4 weeks.  The depression has gotten much worse, mostly because I'm so tired and nothing is helping yet.

But my search for joy is not over and never will be.  Although it is increasingly more difficult to find joy in the thickness of this pain, it is not impossible, and the joy is so much more meaningful when I find it given the darkness that surrounds it.

Recently, I have found joy in:

  • Doing the grocery shopping by myself AND not crying at all while I did it. (Side note: Do you even know how weird and embarrassing it is to cry in the middle of Walmart with a huge shopping cart full of food?  I always want to tell people that they were out of Reese's and that upset me, but I refrain.)
  • Holding a baby and feeling a little bit of a desire to have another, rather than feeling sick to my stomach and cringing.
  • Being surrounded by wonderful people, people who pray for me, visit me, put my name on the temple prayer roll, hug me, listen to me, and love me.  
  • Bugles on sale!!!  Really, joy and good munchy snacks go hand-in-hand.  :)
  • The irony of bawling my eyes out during a Relief Society lesson about happiness and optimism.  It just makes me giggle thinking about it.
  • Getting a nice camera as a family Christmas present and getting to learn a new hobby.
  • Knowing that all of this has a wonderful purpose and that I will only get to see more of that purpose with time.

2.10.2017

The Courage to Ask for Help

Yesterday, I did a new brave thing.  Basically this whole journey has felt like doing one brave thing after another, because something inside of me has pushed me to embrace bravery rather than fear.

Yesterday, I worked up enough courage to ask for help in a moment of great hurt.  Up until yesterday, I have accepted help when it has been offered to me, and that has been hard enough, but I have never dreamed of actually asking for it.  Many people have offered to be there for me when I need it, and I have received an outpouring of love and support, but I have never brought myself to let someone know that I needed them.

A few things have stopped me in the past:  1) Fear.  2) Embarrassment.  3) Pride.  4) Not wanting to be a burden.  5) Not wanting anyone to see me at my lowest.

I'm not sure if those are in the right order of rank, because they all seem equally important in a moment of need, but yesterday, I felt the fear that my friend would think terribly of me for asking for help, that she would feel burdened by me asking for her time, and that she would never think of me the same after seeing me with puffy, tear-stained eyes.  But I knew I needed help.  I was feeling incredibly awful emotionally, and my daughter was napping, so I also felt extremely lonely.  Usually I just try to sleep the loneliness and pain away, but this time, I couldn't sleep.

At first, I curled up in a ball on my bed and sobbed, trying to convince myself of every reason why I shouldn't ask for help.  My mind turned to all the miracles I have experienced in these last few months, the times when people have known to help in an exact moment of need.  I thought maybe I could sit there and wait, and God would tell someone I needed help.  But something inside of me told me that it was my turn.  I needed to ask.  I couldn't expect God to give me the help I needed if I didn't put forth some of my own effort.

So I grabbed my phone and starting scrolling through the list of names in my contacts.  There was name after name of people who have offered help, but I was too afraid.  They must be busy.  I told myself.  They have better things to do.  They have enough to worry about.  

I got almost to the end and found one name that I felt I could actually go through with asking.  I was so so scared and took a very long time trying to make the text sound exactly right, including saying several times that they didn't need to make time for me if they were too busy.  When I had the text all written, and had read over it a million times, I took a deep breath and pushed send.

I curled up even tighter as my mind raced frantically.  Why did you do that?  She doesn't want to come help you.  You shouldn't need to ask for help.  She is going to feel burdened by you.  You should have asked someone else, not her.  What kind of friend asks for help instead of giving it?

The weight of my fear and sadness was crushing me.  After a few minutes, my friend texted back and said that she'd be there in a few minutes.  I sighed in relief and waited.

When she got to my house, I opened the door, and we hugged.  I apologized for asking her to come over, and her reply changed my perspective.  "No, thank you for asking.  It makes me feel good that you trust me."

I thought about how I feel when someone asks me for help, especially help in a time of emotional heartache.  It doesn't feel like a burden.  I feel privileged to be able to help them.  And it most definitely helps me in return to know that my friend considered me someone to call on in a time of need.  It's the same for others when I am the one in need.

Although I wish that I could get through this by myself, that I didn't need to ask for help, and that I didn't need the help I ask for, I am thankful to be learning this lesson and to be creating friendships that reach beyond the comfortable boundaries.  I am so blessed to have the kind of friends who will drop what they are doing and run to my aid, when I need comfort and companionship.

And I am learning that choosing to be brave is choosing to have JOY.  The greatest moments of bravery (what I consider brave) through my journey are some of my greatest moments of JOY!

2.07.2017

That We Might Have Joy: Marion's Story


On August 21, 1986, a beautiful little girl was born to me and my husband Rick. She was our 2nd child, and her pregnancy was unexpected. My older daughter Cynthia was only 4 months old, when I realized I was pregnant again. We were students at BYU, and I had actually dropped out for the semester to stay home with Cynthia. After the semester ended, my husband decided that having 2 children so close together was going to be difficult to let him stay in school full time and provide for our small family, so he went into the Army Reserves to have help in paying for school. I was scared.  I didn't want him to leave us because of having a new baby and expecting another. When he enlisted, I learned that he would be gone to boot camp for 7 weeks and then would go off to train in officer school because of his education, which would take an additional 6 weeks. But at that point, he seemed determined to do this, so I said a tearful goodbye, and our contact was a weekly phone call.

I was extremely worried about this pregnancy because our first child had been born 10 weeks early. I was told at that time I had an incompetent cervix. The pregnancy seemed to progress normally. At first, I will admit I was so stressed and worried about our financial and living situation that I found myself almost wishing that I would miscarry. Then I would feel extremely guilty for having such selfish thoughts. When I got to about 16 weeks along, I realized that this was really going to happen. I know a lot of my anxiety came with just being alone in our little studio apartment with pretty much no friends to confide in. In fact, our next door neighbors were Hugh and Phyllis Nibley. Hugh was, of course, a big time lecturer at BYU and used to be historian for the LDS church. And Phyllis was a very accomplished cellist. They were definitely not people I wanted to hang out with or confide in.

Our small apartment was actually an old house that was converted into a four-plex. After a couple months of being alone, a cute couple moved into the apartment above ours, and we became great friends. We actually met, because our mail would get mixed up all the time. Their last name was Huntington, and ours was Hunting. I was quite naive about prenatal care, and having no money, I didn't go in to see a doctor until I was about 5 months along. I remember going in to see Dr. Jeff Adams. He did a pelvic exam and all of the sudden his eyes went big and wide. I asked him what was wrong. He said, "I'll be honest with you. You are dilated to a 5. But you haven't effaced yet. I'm amazed you have made it this far into the pregnancy without having this baby yet." I was ordered to go on strict bedrest, he prescribed some medication, and gave me a monitor belt to wear that would alert his office if I started contracting. He honestly thought he would be delivering a preemie. Well, I didn't tell him I had a 7 month old baby at home and that we were it. There was no one to care for me or my daughter, so the bedrest thing went out the window. But I did take the medication, and I wore the monitor belt.

I went for 3 more months thinking every morning I would wake up and deliver this baby early. But time went by, my husband made it home from his training in the Army, and before I knew it, I made it to 37 weeks. Dr. Adams kept telling me every visit that I was a walking miracle. At 37 weeks, he took me off of the medication to help stop contractions and the monitor belt was given back to him. I laughingly told him that I would probably be in the hospital the next day having my baby. He said, "I don't think it will start that soon, you still haven't effaced much yet." 2 days went by and then I started contracting and knew we would be having our second little girl soon.

On August 21st, a perfect little girl was born. The nurses raved about her, telling me she was the top of her APGAR score. Our pediatrician came in and told me how delighted he was in this perfect baby. Everyone kept using that word, "perfect". On the day of discharge, Dr. Clayton, our pediatrician, came in for one final look before we left and again called her a perfect angel. I said, "Oh, I'm sure you say that to all the parents." He was really a very kind, gentle man. He said, "You know, I'm always complimentary to parents about their babies. But really, your daughter is physically as perfect as they come." Then he proceeded to explain the APGAR score and told me more why she was rated a "perfect" baby. I was, of course, proud that I had given birth to this beautiful girl.

We still hadn't decided on a name yet for this baby. My husband and I couldn't come to an agreement. We finally decided on Rachel Hope Hunting. Since I was 13 years old, I used to watch a soap opera called "Days of Our Lives," and there was an actress whose name was Hope on the show. I fell in love with that name. I wanted our daughter's first name to be Hope, but Rick was so against it. We decided on Rachel, and he said he didn't mind if her middle name was Hope. So I started life with 2 babies, one 13 month old and a newborn. My husband went back to school at BYU and life, even though a little hectic, began for me as a busy mom. Well time went by, and we still were struggling financially. Rick's education was paid for, but we still had bills to pay and a family to feed. I was only able to nurse my infant for about 6 weeks when my milk suddenly stopped. I have no idea why. So it was decided that my husband would do early morning janitor work at BYU from 4:30 -7:30, he took out a student loan to help us with some bills, and I went to work on a swing shift at a nursing home as an aide. My husband was done with his classes by early afternoon so we would have about 1 1/2 hours together until I went to work. My shift ended at 11:30 at night and I would go home and just collapse. We did this for several months.

I noticed, however, that my husband started getting really moody. I asked him what was wrong. He said it was too hard to take care of the girls and get his studying done. This man was a perfectionist and would not settle for any grade less than an A. His engineering class was quite competitive and I knew he was feeling that pressure as well. I encouraged him that we would have to do this for a year and a half more until he had finished his degree, that this trial would be a short time in comparison to the rest of our lives. He would be okay for a day or two and then the moodiness and would come back. I also noticed that Rachel wouldn't take a bottle from him anymore and that he was a little rough with her at times.

One night, I was at work, and I got a phone call from him. He said that he was worried about Rachel, that he had been watching a football game, and that he had jumped up from the chair in a reaction to a play and landed on her arm. He wanted to bring her to me at work and have the nurse I worked with look at her. The nurse I worked with was a really sharp little gal. She was my age and was working on her RN degree. She was an LPN. Her father was also a pediatrician, and she said she got to work in his office as a teenager, so she knew a little more about medicine than most nurses. When Rick brought her in, Rachel's right arm was swollen at the shoulder, and she wouldn't move it. The nurse said the joint was okay but was probably almost dislocated. She told my husband to be more careful around our girls when watching his sports and told me to bring her into the doctor if her arm didn't improve in a couple days. After the next day, she started moving around as normal, crawling and swinging along like normal so I didn't think much more about what had happened.

Then on April 3rd, 1987,  I went to work like I normally did. I had a quiet shift. When my relief came in at 11:30, I stayed to talk with the night aide whose name was Rose. We talked for about 30 minutes, which was something I never did. Once Rose came on, I usually took right off. I was always anxious to get home, check on my babies, and go to bed. But that night, I stayed. That decision to stay and talk I have regretted the rest of my life.

I got home shortly after midnight and found all the lights on in our house, and my husband holding a lifeless infant. I asked him what had happened. He said he was feeding her, when she threw up, and he thought she had aspirated. I didn't pay much attention to him, and I could tell by the way she was breathing that this was an emergency. So we called our upstairs neighbor who thank heavens was still up. I asked them to keep a watch on Cynthia and explained quickly that we had to take Rachel to the hospital. We fortunately only lived about 5 blocks from the hospital, so we got there quickly, and for the next several hours, the staff worked on our little baby trying to revive her. I told them what my husband had said, that he was feeding her, and she aspirated. She went off to CT scans and other tests. For about 3 hours, I knew nothing that was going on. We waited and waited in the ER. I was starting to feel like I was going to go crazy, because no one would tell us what was going on.

Finally, the nurse who was initially assigned to take care of her told us we needed to leave the room. He looked at us with a strange indifference and almost angry attitude. I asked him what was wrong, and why would no one tell us what was happening. He said the doctor would be in to see us soon, and then he turned around and said, "If you had told us the truth, your baby probably wouldn't be in this condition." I looked at him and wondered what in the heck he meant by that. Then, the pediatrician on-call came in and asked us both a couple questions, and when he learned that my husband was alone with Rachel when this happened, he took him in a separate room and started to question him. They were gone for over an hour. I was agonizing over Rachel. I had no idea where she was, and I was worried about Cynthia being with my neighbors, I knew they would be needing to go to work soon. So I asked at the nurses station where my husband and doctor were. I walked in on them having a very serious conversation. I told the doctor that I needed to know what was going on too. He told me where Rachel was, that they had admitted her to the intensive care unit on Pediatrics. He said he needed a few more minutes with my husband and then he would take us up to where Rachel was. He also seemed detached and aloof. At first I blamed it on him being up all night, but later realized there was a reason why he was treating us so cooly. Finally, they came out of the room. Rick looked pale and very sad.

We went up the the intensive care unit and there my 7 month old was laying unresponsive in a crib. She had a ventilator hooked up to her to do her breathing. Her head was also very swollen. She didn't look like her normal self. I asked the doctor to explain what was going on, and he very candidly told me. As I heard him speak, I remember feeling almost detached from my body. He said that Rachel had been shaken severely and that she had a severe head trauma. He said, at that point, they didn't know if she had brain damage or not. He said, at that point, they didn't know if she was going to live or die. I disagreed and told him, "No, that's not what happened." The doctor looked at Rick and said he had some phone calls to make and that he needed to tell me what really happened. I felt like a stranger was talking to me.

My husband told me that he had an exam that he was trying to study for. He said that Rachel kept crying. He said he would try to feed her, and she wouldn't eat. He said he tried a bottle, and she wouldn't take that. He checked her diaper, it was dry. He said she continued to cry, and he couldn't take it anymore, so he shook her. He said after he shook her that she went limp and wouldn't respond. To this day, I still remember the horror and utter shock and grief I felt at that moment, as I pictured my tiny daughter being treated this way by her own father. I remember the few times I caught him being rough with her in the past couple months and warning him that he needed to be more gentle. I also knew he wasn't a cruel person, that his anxiety over school had taken such a top priority that he was feeling helpless that he couldn't study the way he wanted to. Everything crashed down on me.

I went home feeling so helpless, so very confused, so empty. I picked up Cynthia, explained briefly about Rachel's condition to my neighbors, and they patted me on the back and wished us well. I went back to the hospital later that day after sleeping a little. Rachel's pediatrician, Dr. Clayton, came in to see her. He was so sad. His countenance was fallen. He said, at that point, there was no change. It was a "wait and see" time. I went home and took care of Cynthia, feeling so lethargic. I went in again in the morning. By this time, we had alerted our families where Rachel was, but we were both reluctant to say why she was in the hospital. I think I told my parents that she was dropped or something. I was in such a fog that I honestly don't remember what I told them.

By day 2, she improved some, and Dr. Clayton was hopeful. He said her brain activity was better, she was responding to tests they were doing, and he said, "I think this little girl may pull out of what happened." I went home finally feeling some hope, a lot of relief, and just thought of the day we could bring her home. Rick went to his classes. We went for a short visit as a family to see Rachel. We stayed only for about 30 minutes. She was still improving. We went to bed, the first time we had gone to bed at a normal time. Then a few short hours later, around 3 in the morning, someone was banging on our door. Rick got up, and it was a nurse who was going off her shift. She said that the hospital had been trying to call us, that our baby had taken a sudden turn for the worse and that we needed to get there right away.

Again, we woke our neighbors asking them to watch Cynthia as we hurried to the hospital. I couldn't believe what was happening. I kept saying to Rick, "Why didn't our phone ring?" He admitted to me that he had turned off our ringer so that we could rest. Family and friends had been calling almost non-stop when they heard about Rachel. He had forgotten to turn it back on before we went to bed. He later admitted to me, way down the road that he had also turned off the ringer, because he was afraid that the police would try to call him and ask him questions. He wasn't ready to answer the questions. The guilt of what he had done was eating at him intensely. We got to the hospital, and they said that Rachel had probably stroked and that the crisis was over, but that she wasn't responding at all now. The swelling in her head was getting bigger. The doctors were still deciding what to do. We stayed a few hours and then went back home. I was in shock again. I went back later in the morning and a nurse was very candid with me. She said she had never seen a baby regain a normal life after this type of accident happened. I asked what she meant.

Back then, shaken baby syndrome didn't really have a name. The nurse said that most likely Rachel would die, she just didn't know when. Rick came in at the end part of this discussion. Then a different nurse called in a psychiatrist to talk with us. A very well meaning Dr. Altamarino had a lot of compassion for Rick and put him on Ativan. It knocked him out. He had to sleep it off in the nurses lounge for almost 6 hours. He woke up, saw that things hadn't changed with Rachel, and asked for another dose of Ativan. The physician okayed it, he took it, and again was asleep for a very long time. In fact, I left him there, because we still had another little girl dependent on us. When I came back to the hospital late in the evening, Rick had woken up. He was still in a stupor and demanded another dose of Ativan. I told the doctor no more. Rick got really angry at me and said he needed this to help deal with what was happening. I told him that sleeping through it all wasn't going to help anything and that I needed a husband to help me through this and to quit trying to run from what he had done.

He never took another dose of Ativan after that. Dr. Clayton said the would play it day-by-day. Finally after Rachel was in the hospital for 5 days, the medical team decided that they would run some final tests on Rachel's brain. If she continued to be unresponsive in any way, they needed to consider turning off her ventilator and let her go. It was the worse news I have ever received in my life. I walked home so angry and bitter towards my Heavenly Father. I mean I was ANGRY. I went home, luckily Cynthia was with a lady in our ward who had a daughter her age. There was no one home. The anger took over in such a violent way. I trashed my house. I tipped over furniture, I swore, I yelled at Heavenly Father, I screamed, I cried and cried. How could he take away my daughter like this? And then the memories of when I was first pregnant with her came rushing back. I was being punished for wishing I would miscarry. I was certain of it. The anger continued. And then after about 45 minutes of carrying on this horrible tantrum, I changed my tactics. I prayed and prayed to Heavenly Father. I told Him how sorry I was for my behavior. I made a deal with him. Please save my baby and I would raise her up to be the best person. I would always take her to church and make sure she was a "perfect" girl. It was weird how the perfect word came up again.

I pleaded and I begged for her life to be made right. I went back to the hospital feeling much hope and thought that everything would change, that people would be seeing a miracle because of my prayer. When I arrived at the hospital I was informed that the next day the medical team would perform one last series of tests. If Rachel remained unresponsive, then the machines would all be turned off. I knew that she would prove these people all wrong, I still had faith that this ugly nightmare would turn into a miracle story. Our bishop came. What a wonderful man he was. He was young, only 30 years old. He was so compassionate. He came with his 1st counselor, and they administered a blessing to Rachel. Our Bishop said she would become a mother in Israel and that she would soon be free from this pain. I took the blessing as to mean that she would escape from this unscathed and that things would be alright. It wasn't until almost 10 years later while reflecting on this whole incident that I realized that our Bishop was actually giving a blessing of release.

We went home ready to face whatever was going to happen the next day. We came early in the morning. It was April 11th, my grandma's birthday. Rachel's tests were done. It took the team about an hour. I was later told that they were being very thorough because they wanted to make certain there was no brain activity whatsoever. Rachel had no reaction at all. The doctor over the ICU said that they were going to turn off the machines, and as soon as she quit breathing, they would let us back in to be with her. I didn't know at that time that I could insist on staying in with her or I would have. By that time, my parents had come from Idaho. It only took about 15 minutes. A respiratory therapist came out and looked me in the eyes with tears in his eyes. He put his hand on my shoulder in a comforting way, shook his head, and moved on. I have never forgotten this kind gesture. He is still a respiratory therapist in the Utah Valley Hospital to this day, and I still see him from time to time. I don't know if he's ever recognized me. He is old and gray now but still a very kind man.

Rick and I walked into the room. Our little daughter lay lifeless in her bassinet. My parents came in and sat down in chairs that were provided for us. A nurse handed her over to me and I couldn't cry at that time. I just looked at her face. I couldn't believe this had happened, that she was actually gone. She didn't feel the same to me. I handed her to my husband. As he took her, he started to sob. This was the first time I really saw any true emotion from him since this had all started. A social worker was in the room with us and she looked at me and said, "How do you feel?" How do I feel????? I looked at her like, what kind of question is this? My dad shook his head like he couldn't believe she would say this. I said, "How do you think I feel? Why would you ask such an obtuse question? You need to leave!" She said she couldn't, that she wasn't allowed to since Rachel's death was now going to be turned into an investigation. It all seemed surreal. I didn't even think about the consequences this would bring to Rick and our family. But I pushed that all aside. I had my mother hold Rachel for a few minutes. She gave her back to me and said she couldn't bear to hold her anymore, knowing she was dead. So I held her again for several minutes and then put her back in the bassinet. I took one last look at my perfect girl.

Then Dr. Clayton came in. He was so good to us all. He talked with us about what would happen next. He said since Rachel died under traumatic circumstances that she would be taken to a morgue and an autopsy would have to be performed. This just devastated me even more. I couldn't bear the thought of her being cut up. But he was kind and gentle, explained again why, and then he handed me a book. It was called "Angel Children." He said that unfortunately in his line of work that not everything was happy and good, and that if he had patients die, he liked to hand this book out to the parents. He said it was about a woman who had her baby son die and her experience with finding out what had become of him after he died. I thanked him for the gift. We all went home stunned and in so much grief. I hung onto my Cynthia who almost 2 now at this time, I didn't want to let her go. I cried and cried and cried. People from our ward came over to give their condolences. Meals were brought over. Our bishop came over, and we planned a small funeral. The mortuary called a couple days later and said that Rachel's body had been released to them. They asked us to come pick out her casket and bring clothes in for her to be buried in. They told me that I could dress her.

This was all new to me of course. I told my family what they told me. My mother took me shopping, and we bought a white blanket to wrap her in and some new shoes and socks. The director at the mortuary also suggested we get a rattle or small toy to put in her coffin. He said it "looked" better if the baby was holding on to something. A lot of this is now a blur to me, I only remember bits and pieces. But what I do remember is going in and choosing her casket. That part wasn't hard. They only had 2 to choose from for infants. Then they took me in a room, and there she was laying on a table with a white onesie on. Rachel was actually blessed late in her life. Most babies are blessed when they are newborns, or just a few weeks old. We had one thing after another happen while she was alive, and she was 6 months old before she was finally blessed. I found it strange that she died only 3 weeks after she was blessed. But because of her being blessed so late, her blessing dress still fit her, so we dressed her in her white blessing dress. There is a woman in my home ward who was a fabulous sewer. Her name was LaRue Phillips. She made Rachel's blessing dress. It was beautiful and white and fluffy and silky. It had pearls and bows sewn on. It was the perfect dress to bury her in.

As we dressed her, I was saddened to see staples all over her body from where they had cut open her abdomen to examine her. She had a huge incision across the back of her head that was also stapled. It made my mother cry. I was too numb to cry, but I cry now whenever I think of her perfect body scarred like that. We got her dressed and ready. The next day was her funeral. It was just my family, my husband's family, a few friends that I worked with, my visiting teachers, and our home teachers. The service was short. I had decided to have Rachel buried in my hometown where I had been raised. We had a small community cemetery there in Terreton. My dad had purchased a lot for Rachel. The next day after the funeral, we drove to Terreton and had a viewing at the chapel in Terreton. Most of my friends in high school came, our neighbors, and people from our ward and community came. My high school basketball coach came in and just hugged me so tight and cried with me. It was so hard to go through that.

Then we went to the cemetery and buried her there. I left that day feeling like I would never get through the pain of losing my Rachel. But as I watched her little casket being lifted into the ground, it came to me so suddenly. I kept hearing Dr. Clayton tell me how perfect Rachel was when she was born, and I realized why she was so perfect then. It was because she was a perfect being. My little girl was perfect. She wouldn't have to go through this earthly life at this time. She was a valiant spirit who didn't need to be tested. Now this knowledge didn't take away my hurt, but it gave me a great sense of peace. I also knew that Rachel loved me and her father, and I could almost feel her sorrow for her father for what he was about to face. But I also knew she was at peace and that she had other work to do. At times throughout my other daughter Cynthia's life while growing up, I would watch her play alone whenever I would take her to a playground. I would always get a lump in my throat and felt bad that Cynthia had no companion, no sibling to go through life. I would feel cheated and felt she was cheated. It was hard not to feel angry again. But I knew that Rachel was watching over her sister, and I knew in my heart that one day there would be a glorious reunion when my two girls would be together again. I knew, at this point, it was up to us to be faithful and valiant as well, so that we could earn our glory to be with her, our perfect daughter and sister.

The next few months were hard times. Because Rachel had died, my husband was charged with involuntary manslaughter. Cynthia was taken from our home. This was even more difficult to bear. I had just lost my baby and the state took my other child away. They did allow her to stay with Aunt Lareine who lived with her family in Salt Lake City. They had a daughter just a year older than Cynthia, so Cynthia at least wasn't in a foster home. She was gone for 3 months before the courts determined that she would be safe with us. Rick went through 3 trials before they decided what to do with him. They decided to keep him under psychiatric observation for 3 months. Normally this took place at the state mental institution, but that facility was going through a major rehaul and several of their buildings were down, so Rick was taken to the state juvenile center at Point of the Mountain.

Cynthia and I were allowed to visit him weekly which we did. Our bishop sometimes came with us to visit him as well. He was such a faithful bishop to us. He made sure I was taken care of with food and rent. I truly learned the blessing of fast offerings and determined I would be generous with mine when we were back on our feet. After 3 months of the psychiatric observation, Rick went back to court. It was determined that no more observation was needed, that he would serve 2 years or parole and that he could come home. That was such good news to me. However, I didn't think what would happen next. The church held a church court. Rick was disfellowshipped. Because of this, BYU said he couldn't attend school there until the church court reconvened in a year. Rick was devastated. School was again to be put on hold. Then we were delivered another blow. Because we had no insurance when Rachel was in the hospital, we applied for Medicaid. Her hospital bill was over $12,000 for the 6 days she was in the hospital. The state decided that we needed to pay restitution, and we were given 2 years to pay back the $12,000 bill. I know now days, $12,000 is cheap for a hospital stay, but in the late 80's it seemed like a fortune. The state wouldn't rely on us paying on our own, so they garnished 3/4 of Rick's wages until the bill was paid in full.

Rick never complained about this part. He later told me that he decided, in a small way, it was his duty to pay this, to pay the debt for taking Rachel's life. That made our lives very hard, but interestingly enough, we got through it without fighting, without hurting one another. A year went by,  and we continued to go to church. I felt like I was starting to feel like having another baby. Rick didn't want to while we were paying back the restitution, and I honored his wish. After the first year went by, Rick went back to the church court. He was reinstated with his Melchizedek priesthood. He was eligible to reapply to BYU again. As glad as he was to be fellowshipped again into the church, for some reason he never forgave BYU and decided not to go back there to finish his engineering degree. He had an associate degree in business and math and went to work for Orem City. We thought that life was starting to finally get back to normal. We tried again to have a baby. I had friends who were so stalwart through our ordeal that they helped me get through each day.

One of these friends, whose name is Linda, asked me one day, "How are you getting through this? You always seem happy and positive." I told her for the most part I felt I had been blessed with a positive attitude towards life. I told her I really had no choice but to get through life. I said, "I have another child who needs me, I have to keep going." I did confide that sometimes the darkness and despair seemed to engulf me at times, mostly at night when I would think about what happened to Rachel, or when I was alone. But I would close my eyes and picture her and ask for peace and it would come. Not once was I left alone spiritually through this. I felt Rachel through the Holy Ghost.

Sadly, 3 years after Rachel died, my husband went through a deep depression. Even though he had a fairly good paying job and on the outside seeming to go have pulled through, his experience of court trials, both state and church, and going through having a record now started to make him unravel. He withdrew completely. I was still quite young and didn't understand this. I felt like we were ok, we had survived an awful experience. But Rick didn't recover, and I realized I really had no idea what he went through. He would never talk about it. I couldn't deal with this person he became. I decided I wanted a divorce. He didn't even fight me on it. A week later, he said he found a job in Boise. He packed up his things, moved to Boise, and then brought back our car. And that was it. We worked out an agreement of when he could see Cynthia, I assured him as long as he had someone reliable to watch her that I would never fight him on his visitation rights. We worked out a child support payment. I had a few friends who wanted me to sue him for more money to hurt him. But strangely, even though I felt like I didn't love him anymore, I had great compassion for him and didn't want to make our sad ending worse.

I continued to feel great strength inside and realized later that this was the Holy Ghost with me. I knew that Rick had gone through a fire I couldn't imagine, that the burden he would carry the rest of his life, knowing he had been the cause of an infant's death, would stay with him forever. To this day, I don't know if he has come to terms with that. How do you come to terms with that? He eventually left the church, and in his bitterness that seemed to grow, he took our oldest daughter with him in that direction. To this day, I pray for both of them to come back. My daughter loves her father fiercely and I hope that someday, someone will touch their hearts. But as much sorrow I feel for the loss of them and of Rachel, I still know that everything will be okay. I see my oldest daughter weekly when I go to work in Provo. We eat lunch and discuss life. She still doesn't want to have anything to do with the church but she still is involved with my family, and they make her feel very loved. I asked her one time if she ever felt anger towards me for divorcing her father. She said she was always sad as a kid but when she started to live on her own and later married that she realized more of what we went through, and she understood how and why things ended with us. She also mentioned that I seemed to be at peace with what had happened and that gave her hope. I truly hope she finds her testimony someday and that her sister Rachel will be a guiding force in her life.

I'm so thankful for a loving Father in Heaven who loves me. There are times I really feel alone, and then there are times that I can feel Him overwhelmingly. I'm grateful for a forgiving spirit. To this day I hold no animosity towards Rick. I still grieve from time to time, but I'm not angry at him. And I feel that feeling of compassion comes from our Savior. What a grand example He is to us. What a completely amazing person He is to me. He saved me, there is no doubt. I could have given up so many times, but I didn't, and I know it's because I leaned on Him. Sometimes I look back and can't believe I got through that ordeal without being so very bitter. I am blessed to be a Latter-Day Saint and am so grateful for the knowledge that I will see my daughter again. That alone gives me peace. I know it, and I believe it.

2.05.2017

A Miracle of Light

Words cannot describe the depth of darkness I've experienced in these last 7 days.  On the outside I have functioned and accomplished some things, and I've even attempted to smile through it, but on the inside I have felt devoid of all emotions besides overwhelming sadness.  Even when I'm not crying, my heart is weeping and begging me to find someone to make it feel better, to take away the pain, and to give me relief.  7 days of this, and it feels like an eternity, like I don't remember what it's like to experience light.  This week, I've had to search to find joy harder than ever before by making a very conscious effort to notice and appreciate all the little things that bring me joy.  I've found joy in getting a nap, seeing my daughter's silly expressions, spending time with my family, making some wonderful new friends, and spending time with my already wonderful friends.  Truly, I am very blessed.  Some days I have found the greatest joy in knowing that I held on through another very difficult day and that I didn't give in to the beckoning call to give up, something I have promised I will NEVER give in to.

Mostly the things that brought me joy this week were small things, but yesterday there was a big one, one that I'll never forget!  I was at the adult session of stake conference in the evening, and I was listening to the messages being shared.  My heart was empty, completely unable to feel anything, and it hurt.  It physically stung.  I desperately wanted to feel the comforting, calming influence of the Spirit, but I didn't; I couldn't.  I knew I was worthy to feel it, that I hadn't done anything wrong, but the darkness surrounding me wouldn't let anything in, especially not the still, small, and delicate voice of the Spirit.  I continued listening to the speakers while feeling this deep yearning in my heart.  The more the speakers went on, the more my heart felt broken and devastated.  I would have given anything in that moment to feel something good.  I felt trapped in my emotions and wanted any way out.

The next speaker to get up was the mission president's wife, a beautiful, humble, sweet, and pure woman. As soon as she got up and opened her mouth to speak, the darkness lifted, and I felt (I actually felt!) the soothing balm of the Spirit on my wounded heart.  Along with it came a great feeling of love and approval from God.  I don't remember what she said (I shouldn't admit that, but it's true), but I remember basking in the warmth of the feelings in my heart, feelings I hadn't felt in a very long time.  It was almost as if the Spirit could not be restrained from touching every heart, including mine, by the purity in this woman's testimony.  Her message was short, and as soon as she sat down, the darkness fell upon me again, but for that one moment, my hope was restored.  I got to feel the Spirit and know what it was like to see light again.

I pictured it being like a crack in the wall of my dark tunnel, enough of a crack to let a little light in.  It didn't last long, but it touched me in a way to give me strength and confidence to continue battling darkness and sorrow.  It was just enough light to help me move forward until the next ray of light shines in my life.

God is a God of miracles, and He knows exactly when to give us little and big miracles.  He is the source of joy and hope and eternal peace.  His perfect plan allows us to each experience our own individual forms of darkness and pain so that we can more fully recognize and appreciate the light when it comes.  THAT is joy.

2.03.2017

Trial of Faith


This scripture has been on my mind CONSTANTLY this week.  I guess you could say it's because this week has been a pretty intense trial of faith.  Things have been really hard, and I've felt completely submerged in darkness.  But the darkness has seemed darker and more painful because of the light I experienced first.

Last Sunday and half of the day Monday, I felt great!  So great that I created a very full schedule for myself, actually contacted people for visiting teaching, exercised, wrote love notes to Kyle, etc.  The best part of it all was the fact that I felt love for Kyle and Brooklyn.  I always know that I love them, but I very rarely get to feel it with all of this darkness.

I was so happy to feel some motivation and light in my life.  It was a comforting reminder that the real me isn't this person who battles darkness.  The real me is someone who loves life, loves her family, and wants to live a good life.  I can be the kind of wife and mom I want to be.  That woman is still in there.  The good feelings should have been a breath of fresh air...

But then the darkness came back with a fiery vengeance.  And instead of being thankful for having a good day and a half, I felt intense pain.  I questioned why all of this darkness exists in my life, why I can't just overcome it, and why every day seems to be a battle to want to keep going.  It didn't seem fair as I desperately yearned to feel love for my family again and to be my normal self.

And then I found this scripture.  You could say that it popped into my mind, and I felt drawn to look it up.  I realized that this week is a trial of faith.  I have to have faith in the love I have for my husband and daughter, even when I can't see or feel it.  I have to hope that this will get better and that there is a reason to keep fighting, even though I don't know how it will all work out.  I have to have the firm faith that joy is possible regardless of my circumstances, even when I struggle feeling anything beyond sadness.  I must have faith that God is pleased with me, even though I can't feel the Spirit and my heart feels nothing but guilt and shame.  And I have to rely on the faith that my husband and daughter really do love me, even though my mind tries to tell me that they deserve better than what I offer.
 
Someday, I will receive the witness of all of these things.  Someday, I'll get to feel love again, and it will fill the empty places in my heart that feel nothing in the present.  Someday, I will overcome this excruciating war, and I will see the most brilliant light I can comprehend.  Someday, I'll feel all things good and uplifting and joyful.

And for now, I can be content with having faith in my somedays.