March 31, 2017

Right Now....

Right now I still have tough days - some weeks there are more tough days then there are good days. Even when I have a good day it is still tough. My good days can turn into tough days at the flip of a switch.

Right now I still feel like I shouldn't be happy or I shouldn't be laughing. I feel like I am betraying Daron if I'm happy or laughing. Even the happy memories of Daron can cause me to feel like I am betraying him for some reason. I know that he would want me to be happy, but it is difficult. I do still smile & laugh at the good memories of Daron.

Right now I still feel like I should be dressed in all black & be in mourning.

Right now it is tough to have the motivation to get out of bed in the morning. I have to remind myself that I have to go to work so I can provide for my son.

Right now it is tough to care about anything that is going on around me or things that I have to do everyday.

Right now it is tough to go to church on a regular basis. I feel like I don't belong there anymore. I feel like I am out of place when I am there. I feel like I am a parasite or invisible when I am there. I understand that people don't know what to say & so they ignore me. Saying something is better then saying nothing at all.

Right now I don't care about things that I should care about outside of basic necessities (food, bills, personal hygiene, etc).

Right now I am still in the grief fog & I wish others would be more patient & understanding with me. I forget things. I have to write notes of what I am supposed to do. I forget what I am saying or what is happening in a conversation.

Right now I wish that people would stop telling me that I need to get over my grief & move on already. I wish they would understand that loosing my husband is not something I can just get over & move on from at the snap of a finger. Please give me some grace & let me walk this journey at my pace.

Right now I have become a pro at putting on a fake smile & getting everyone to believe that I am doing better then I really am. I am tired of the fake smile. I am tired of acting like everything is okay.

Right now I am missing my role as wife & caregiver to Daron. I miss the little things in our marriage. I miss having a co-parent. I miss having time to myself. I miss having someone to bounce ideas off of. I miss my life prior to July 30, 2016.

Right now I am praying that God will continue to give me the strength I need minute by minute. I am trusting him to provide for my needs.

Right now I am asking you to pray for Taylor & I as we continue down this journey. It has been 8 months & I have only made it through by the grace of God.

March 5, 2017

Our Story Chapter 7 -- Last Few Years Together

When Daron said he wanted a divorce at the end of 2013 & beginning of 2014, life really wasn't the same. Our marriage wasn't really the same either. I tried to convince myself that he didn't know what he was saying & he didn't mean it. But it didn't work. Whenever we talked after that I could sense the strain. I had to try & put it behind me.....easier said then done. Daron said he wanted the divorce for financial stability for me. He said that the only way he could think of to take care of me & Taylor was to divorce me. He said he had talked to another resident who had a divorce for financial reasons & it sounded like a good idea to him. He didn't understand how much that crushed me emotionally & mentally. He couldn't comprehend how much that hurt me. He couldn't see past wanting to help me & he couldn't see how it wouldn't help me.

What a way to start a new year......

This talk went on over the course of a few months.....he brought it up during every phone call. The hardest part was that he wanted me to find the attorney & file for divorce since he was in the nursing facility. He got incredibly angry with me every time I said I would not do that. I told him that if he wanted the divorce he had to figure out how to file on his own. It got so bad that I had to stop all communication with him for awhile. I had to block his number so I didn't know when he called. He could leave me a voicemail & then it was up to me to call him back - which I usually didn't do. I did this as a way to protect myself emotionally & mentally. I did start returning his phone calls & I always reminded him of the boundaries - if he mentioned divorce, I would hang up on him. I knew that he couldn't focus mentally & that things just come out without him realizing it, but I had to place boundaries. This was at the advice of the psychologist & doctors.

A few months of peace went by & I felt like I had a piece of my husband back. Then the MS caused another turn & the man I married disappeared again. Daron began blaming me for him being in the nursing home. He told me that I abandoned him & that I was telling the staff to not let him do certain things. I know that he couldn't mentally understand that what he was saying wasn't true, but that didn't stop the hurt the words caused. It became very draining emotionally & mentally to visit with or talk to my husband. Taylor & I made semi-regular visits to Battle Creek. As Taylor got busier at school & I had my job, it was harder to make weekly visits. I do regret not visiting Daron on a more regular basis, but life at home got in the way. That's how things happen I guess.

2015 brought about more health declines for Daron. It also brought the start of 4 years that Daron was in the nursing facility. Each day it was hard to believe that Daron had been in a nursing facility for that long. Taylor & I did our best to carry on each day. Taylor started 6th grade - Middle School - & I felt another year older. In November 2015 we got a glimpse into how much of a decline had taken place. Daron was sent to the Hines VA Center outside of Chicago, IL for testing that couldn't be done locally. The staff at the Battle Creek VA were noticing that Daron was loosing weight, not eating, choking on his medications & food, running into walls or people in his wheelchair & loosing coordination. They were concerned & wanted further tests done. Because Daron was still in charge of making his own decisions during this time, he asked the staff to not tell me. He was in IL for a full day when we found out. He was talking to his parents & mentioned that he was in Chicago. They called me & I had no idea what they were talking about. I called the VA social worker in an angry panic & was told that Daron told them not to tell me.

I decided to drive to IL to get more information directly from the doctor. I got there in the evening so the doctor was gone. I was able to get some information from the nurses, but not a whole lot. They were still waiting on some tests to be run. I went into Daron's room & woke him up to let him know I was there. I was absolutely shocked to see how much of a decline he had taken. I had visited him a week or so before & he didn't look that bad. He parents saw him a few days before they sent him to IL & they didn't think he was that bad either. The person I saw in that hospital bed looked like my husband, but it wasn't my husband - if that makes any sense. Daron couldn't see me unless I was super close. He was pretty much legally blind. He couldn't eat solid foods anymore. He couldn't hold onto his phone by himself. He was at the mercy of the staff.....

My plan was to stay in the the guest area of the VA Center, but Daron told me to leave. He told me he didn't want me there. So I turned around & drove back home. I should have stayed, but I know how Daron's temper was at that time & I didn't want to do anything to cause him to take it out on the staff. I did get a phone call from his doctor a few days later & was told that they were waiting on test results. The doctor said that his MS was progressing & was now Malignant MS. I had never heard of that form so I spent hours looking it up online. Everything I found said that this was a rare form & that he might have 6 months left. I went numb.....

Daron was released back to the Battle Creek VA on November 12th. Taylor & I went to visit Daron on November 13. I had tried to prepare Taylor the best that I could, but you can't really prepare a child for that sort of thing. Taylor did his best to stay present during the visit. He answered his Dad's questions about school & gave him a hug. About 15 minutes after we got there he asked to leave. I could tell that he had mentally checked out so we said bye to Daron. Taylor was able to stay composed until we got down the stairs.....then he just clung to me & cried. I cried right along with him.

On December 2, 2015 Daron's parents & I attended a care conference to get a better understanding of this new Malignant MS diagnosis. I went into the meeting with at least three pages of questions. I left the meeting with a lot of information & had to take time to process all of it. Malignant MS is a very rare & very aggressive form of MS. It is so rare that the staff at the VA had never heard of it. They weren't sure what was going to happen with Daron or how quickly things would happen. Daron was placed on a nectar thick diet, had a new wheelchair ordered & had to see the low vision center. We were also told that Daron might have 6 months (more or less) left on this earth. That was tough to hear & we had to remind ourselves that only God knows the exact time frame for Daron's life. I had a meeting with the care team on December 9, 2015 to discuss end of life decisions so everyone was on the same page.

Everything from that point on came at a fast pace. I felt like I was in a whirlwind & out of control. Some times I felt like I was having an out of body experience. I had to write everything down because I was afraid I would forget something. This also led to some very emotional moments & some very emotionally out of control moments.

On March 3, 2016 I fell on some ice while at work & injured my back. I was told to take the next few days off work & see the doctor again on Monday. On March 4, 2016 my niece was born. On March 7 I see the doctor again.....long story short, I end up missing the remainder of the school year. I had to have a bone scan & an MRI done. I went to PT & then to a specialist. He sent me to PT that focuses on getting you back to work. It was a crazy few months, but I was able to visit Daron during the day while Taylor was at school - if my back wasn't bothering me.

In April 2016 I was informed that Daron needed a feeding tube or he would have to go into hospice care. At the time, I was given the impression that it was life or death. I was kept up to date on how things were progressing so I could help make an informed decision. On May 4, 2016 I had a very tough conversation with Daron's doctors that led to a moment I kind of regret......I stormed out & slammed the door. At this meeting I was told that Daron was not ready for hospice & I felt completely betrayed by the doctor who had given me the wrong impression. After I calmed down it was decided that Daron would be moved into palliative care with the understanding that he could move into hospice at anytime. We had reached the beginning of the end of Our Story together & I was not ready for this next turn in the journey.

On July 8, 2016 I was at my church getting the decorations in place for our VBS program when I got a phone call that Daron hasn't been eating & he has lost about 12 pounds. I wasn't completely worried because he was still heavier then he had been in the past. The doctor & I decide to wait & see what the weekend brings. On July 11, 2016 our church started VBS & I basically left what was happening with Daron at home (as odd as that sounds). I was glad I had a distraction during the day. I got a phone call after I got home that pretty much shattered my heart......it was time to move Daron into hospice care. I made the decision to not say anything to the VBS staff - I only told the two other directors so they were aware in case I had to leave at a moments notice. I am still incredibly thankful that VBS was happening that week. If I didn't have that distraction, I don't know what I would have done.

From July 8 until July 27, 2016 life was crazy busy. I spent the week of July 11-14 going to VBS until noon & then trying to make sure things were in order for when Daron passed away. I wrote the obituary, I wrote the outline for the funeral service, I took Taylor to say his goodbye to his Dad (thankfully my brother went with us). I tried to prepare myself & Taylor for this next step.....easier said then done. On July 27, 2016 Daron's Mom & I went to what would be our last care team meeting. Since it is still so fresh in mind & I am not ready to go over everything that took place again, I am including the links for a few of the posts I wrote while all of this took place. I encourage you to read them if you haven't already.......

Saying Goodbye - It's Not For the Weak -- This was written a week after Daron was placed in hospice care.

Final Goodbye -- This was posted a few days after Daron was called to Heaven. It covers the last few days we spent with him here on earth.

Thoughts & Ramblings of a Grieving Widow -- This was written two days before Daron's funeral.

It is still hard to believe that the Our Story has reached the end so soon. There are days when I feel like Daron & I just met yesterday. We didn't have a lot of time on this earth together, but I am grateful that we will have an eternity together in Heaven. Some days that is the only thing that keeps me moving forward.

Thank you for reading Our Story. It was something that I never thought I would be ready to share, but I am glad that I did. Feel free to leave any questions in the comments below......I'm glad to answer anything that you want to know more about. I will never tire of talking about my beloved husband Daron & the life that we had together!

Struggles

I have been struggling to.... ....get out of bed in the morning. ....be a good mom. ....take care of my house. ....take care of myself. ...