UPDATE

Ok.  So, I have felt for a while now that I need to update everyone. I have wanted to share my feelings and thoughts to others out there but because my thoughts and feelings change so frequently I can never complete a Blog draft that I feel content with. (I wrote my first draft in November… 3 months after Shawn passed away, since then I have deleted, added, and revised a lot) I also have hesitated because I was sure most people didn’t want to hear all my thoughts, especially the bad ones. But I have come to the conclusion that without sharing bits of the bad, you cannot appreciate the enormous amounts of good.   If you are interested in reading this very long and very thought out post, know that I have felt prompted to do this so if you feel the need to judge please keep those judgments to yourself.

 Writing has been a way for me to really understand what I’m feeling and to sort of empty my brain onto paper (no worries, I won’t empty it all out or we could be here for days).  That is one of the many reasons I am doing this, but more so, to perhaps help someone else out there struggling.  Helping someone else while I am struggling myself is something Big Shawn taught me and I believe it would strengthen our love and relationship through the veil.  Helping others would also make Shawn proud of me, which is something I strive to do every day.

Sorry for any of you out there that have been left hanging but most of you know that Shawn passed away August 15^th  2011.  A little background on the days before August 15^th, and really from his transplant on since that was the last time I updated the blog.  I am going to be brief on talking about a lot of this because it is personal, and deeply painful to think about.

After the transplant we stayed the rest of June and all of July in the hospital.  His counts actually did start to recover and he began making good blood cells but his body was so frail and since he was unable to walk or eat very well the doctors kept us there for some rehab.  Once they gave into us begging to go home it was the beginning of August by then; we were confident we could get Shawn feeling better at home before the birth of our son which was scheduled to be August 17th.  We were able to spend one night at home in our new apartment which brought a lot of strength and happiness to us both.

 The next day Shawn spiked a pretty high fever and we had to be readmitted to the hospital.  Sometimes I wondered why it was that we were only allowed one day at home before everything changed.   But I now know that the Lord had a hand in that, like so many other things he has.  After a few tests they told us that Shawn’s Leukemia had returned in spite of the transplant and that there was really nothing else they could do.  I won’t go into too much detail of my reaction after that news, I’m sure you can guess what went on. Pure and intense heartache, dreams shattered, happiness lost, despair, and fear for the future were just a few of the things that went through my mind.  Along with, will my husband ever meet our son here on earth? 

Soon after this Shawn and I had a brief discussion that I hold dear and will never forget.  One thing we determined was that if it was at all possible we wanted to have our son soon because the doctors did not know how fast the Leukemia would take his life.  We got in contact with my Nurse midwife, Machel Knowles, and she immediately began pulling strings at McKay Dee hospital and soon called to tell us that we could go to deliver that very night if that’s what we wanted.

So we did .  We drove from LDS hospital to Mckay Dee hospital. After settling in and getting our room arranged with two hospital beds next to each other (one for me and one for Shawn) , we delivered our beautiful son on August 5^th 2011. He was just a few weeks earlier than his due date and perfectly healthy.  Some of you probably knew that we had decided to name our son Lucas so we could always remember the beautiful miracle he was while we were battling Leukemia.  Lucas Shawn Barnes.  Well I had other plans from then on.  Shawn agreed to letting me name our son after his amazing strong Daddy.  So we named him Shawn Lucas Barnes.   It took some getting used to but from then on it was “Big Shawn” and “Little Shawn”. 

Here are a few pics of that day.  Before this I had no idea the human heart could inhabit utter happiness and utter despair at the same time.   I can’t even describe to you all the feelings I had during the delivery and the events leading up to it.  But I do know that I was indescribably grateful that Big Shawn was there with me, holding my hand, on the second best day of our lives together.  Little Shawn came into this world in serene chaos, and completed our eternal family.

We got to spend 10 days together as a family in Shawn’s parents’ home.  Not only our family of three, but as you can imagine, we had both of our families near us almost at all times.  Everyone, including myself, was gaining life lessons from Big Shawn every second we were by his side. These lessons often didn’t  even require words. Shawn was able to give little Shawn a name and a blessing, which was absolutely beautiful. 

Many of you have asked how I am doing.  This is one of the reasons I have wanted to blog.  But this question is not so easily answered.  Today was alright.  Yesterday was good.  And the day before that sucked.  The expression take it a day at a time has never been so real to me.  It is going on 9 months since Shawn passed away. And the cloud of fear, anger, depression, misery, and despair is starting to clear up.  Does this mean that I don’t cry or am not sad anymore? No.  Will it ever be that way? No. Does this mean that my life is back to normal? No.  Will it ever be? No.  This chapter in my life has forever changed me in so many ways.  I have been permanently changed and life will not ever be normal, because life isn’t normal. However this chapter in my life is just that.  A few months ago I would probably scream at you if that’s what you called Shawn, a chapter of my life.  But today I have accepted that.  Even though Shawn has changed me for the good and made me live life very differently he was not MY life.  I have to remind myself that very often because if Shawn was my life then what would make life worth living anymore?  So The Erin Book will have many chapters, and I will take what I have learned of love and life from Shawn and use it to finish my own book. 

People often ask me now if I’m back to work, which in my head sounds like they are asking “So, are things back to normal for you?” I think something people don’t realize is that my life doesn’t have a normal state to turn back to.  My normal life was thrown out the window about a year and 3 months ago when Shawn was diagnosed with leukemia.  When everyone goes back to their jobs, spouses, and running their kids around to various activities… Where am I?  I’m sitting at my parent’s home with my son trying to establish a new normal.   Normal life for me is missing Shawn. He was my normal, and now that he is gone, Little Shawn is becoming my normal.  If that makes any sense. That information is not vital for others to know, but perhaps it will be one day when you talk to others in grief.  Just know that it feels as though your world is in upheaval. It is hard to watch the normalcy of others’ lives around you continuing on without you.   Well, since I’m not here to tell you how depressing life can be, let me tell and show you what me and little Shawn have been up to.

First, we went to Hawaii with my parents and some good friends in October.  It was so wonderful, and very therapeutic to be in such a wonderful beautiful place with such wonderful beautiful people.  Ironically I think I felt closer to Shawn in Hawaii than I did at home.  It was almost as if we were both in heaven together. 

We also went to Pennsylvania for Thanksgiving to be with my sister and her family.  It was so fun.  And here are a few pictures of Little Shawn growing up.

Now I don’t pretend to have the strongest testimony or to be so positive all the time, but there are a few things out there that have helped me.  And maybe it can help someone else, so I will share.

·         We are sent here to this earth for the purpose of being tested.  We hear many of these things I’m about to share all growing up in primary.  But for me, and many others, keeping this eternal knowledge and perspective helps me to find my motivation to continue.  Some days even strive and thrive.  “Tests and trials are given to all of us.  These mortal challenges allow us and our Heavenly Father to see whether we will exercise our agency to follow His Son.”(-Robert D. Hales, Waiting Upon the Lord, October 2011) I choose to follow His Son.

·         Sometimes I feel out-casted in ways.  People understandably don’t know what to say to me.  Well let me put you at ease.  I’m not going to punch you in the face or break down crying in front of you for something you say.  (Well, unless we are very close friends or close family, and if that’s the case, I will always appreciate your words and please just give me your shoulder to cry on.)  Haha, but if you are not one of these, say whatever you want… I don’t take offense very easy, trust me.   But please don’t avoid me, it’s just weird.  Advice someone gave my cousin once was to ask me, “How are you today?”, or even right now because it changes just that often. I thought that was excellent advice.  One more food-for-thought when perhaps talking to a grieving person…  It irritates me when people say to me “I don’t know how you’re doing it”.  It makes me think, “O I’m sorry, I didn’t know I had a choice! Are you telling me I can just ask to not deal with it and it will magically disappear and perhaps Shawn will reappear? Please do tell your all knowing secrets of how to do that!” Ha.  There you have it, life inside my head occasionally.  Don’t worry if you have said this to me, like I said I don’t take offense easily, I’m simply letting it be known.  When in doubt or at loss of words, hugs and silence can be the best words.

·         It is a choice whether or not I will follow Christ.  Obvious statement, right? Well not so for me.  As some of you can imagine, anger is a big part of grieving.  Anger at God for allowing or causing this to happen (neither of which are true).  My thoughts for a while were “Why would I turn to God and Christ when they are the ones who did this to me?”  I couldn’t blame my heartache on anyone except them.  I felt forced to follow Christ and hated it. Everything I was reading was telling me to turn to Christ if I wanted to heal.  Pray to get comfort.  Serve others and become more like Christ to feel better.  It made me so angry, so I didn’t do these things for a while.  That would show Them, right? Wrong.  I only became more miserable.  Anger consumed my thoughts.  To the point sometimes I hated hearing anyone talk about their testimonies… scoffed in my head at them…like ‘yeah easy for you to say…what have you been through?’  I subconsciously wanted the anger.  Because maybe that was easier than the sadness.  But I now know that I cannot heal without Christ.  Without the enabling power of the atonement as David A. Bednar says.  It truly gives me strength to change my circumstance.  I have a very wise friend and previous bishop tell me that if we can control our present, we can control our past, present, and future.  To me this means attitude.  I can choose to fall and be crushed by all of this or I can ensure a happy past, present, and future by trusting in the will of the Lord.  And I choose to be happy.

·         In grammar speaking - death is not an explanation point, merely a comma.  –Elder Maxwell

·         Christ understands. Completely and more.

·         Even though God doesn’t always answer your prayers in the way you want, he always prepares you and gives you the strength and the things you need to endure what is ahead. 

·         The talk Tragedyor Destiny? By Spencer W. Kimball.  Read it, it’s amazing

·         The talk Trustin the Lord by Richard G Scott, given October 1995 general conference- also amazing.

·         This last general conference helped me as well.  So many I loved.  To name a few, I loved what Elder Holland said about envy, and that it is a sin.  He said “Envy is a mistake that just keeps on giving.  Obviously we suffer a little when misfortune befalls us. But envy requires us to suffer all good fortune that befalls everyone we know.  What a bright prospect that is.  Downing another quart of pickle juice anytime anyone around you has a happy moment.” (ElderHolland, April 2012).  This was especially good for me, it’s hard to not look at all the marriages around me and be angry that I don’t have my husband, it can drive you crazy if you let it.  So I’m working on not being envious. 

o   David Baxter, as a lot of you know, is our family Hero.  He gave me and Shawn blessings in the hospital and became a good support to us.  His talk to single mothers really inspired me. Read it.

o   I loved what Ronald A. Rasband said about not asking if someone needs help if you can see they are drowning, and just jumping in after them.  I have some amazing friends and family that did just that.  Although the saying “let me know if I can do anything” is well-meaning, it is rare someone drowning will be able to call out for help. 

·         Preach my Gospel has some good quotes on patience.  “Patience is the capacity to endure delay, trouble, opposition, or suffering without becoming angry, frustrated, or anxious.  It is the ability to do God’s will and accept His timing.  When you are patient, you hold up under pressure and are able to face adversity calmly and hopefully.  Patience is related to hope and faith - you must wait for the Lord’s promised blessings to be fulfilled.” Also, “Life is full of difficulties, some minor and others of a more serious nature.  There seems to be an unending supply of challenges for one and all.  Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.” –President Thomas S. Monson.  These quotes rang so true to me when I was in the depths of despair, I just wanted time to get here already because they say, “in time it won’t hurt as bad, in time you will feel happy again, in time you will be happy for Shawn’s influence in your life instead of sad he isn’t here, in time in time in time.” Well I wanted time to hurry the heck up.  But this helped me to realize that the best way to go through things is to just go through them.  You can’t skip grief or rush through it to get to the other side.

·         All your losses shall be made up to you, provided you remain faithful. –Joseph Smith.  Well, you better believe I’m counting on that.

·         There are many people that help me get through the hard times, but two that I really would be lost without are little Shawn and my friend Tiffany Johansen.   She lost her husband recently as well.  Talking with her has been so beneficial for me, she might never understand my deep appreciation of our friendship.  And how could this little guy not brighten your day?

Little Shawn with Uncle Jared

Little Shawn with Grandpa

I could go on forever on things I have read or people I have talked to that have helped me. These are just a few of my favorites. I hope I have helped somebody out there with this post, or at least helped you all to know that- yeah, some days are hard, but I am choosing to follow and have Faith in Christ. In the end, isn’t that what it’s all about anyway?

Thanks for the many prayers, they have been felt.

 Love,

Erin & Little Shawn