November 5, 2012

New Job!

I am so excited. I just completed my first day at my new job. I haven't worked since 2007/2008 & I actually missed it. I now work in the Food Services department of the high school I graduated from. Yes, I am a lunch lady - well, it's more like the dish diva, but I love it. I work while Taylor is at school & we still have the evenings & weekends together. I even get a few hours to myself after I drop him off & before I go to work. I am so thankful to two of my friends for recommending me for this job - I never would have gotten it without them!!

October 16, 2012

Update on Daron & Taylor

I know that lately all of my posts have been about what I am going through. So, I decided to update you on how Daron & Taylor are doing. If you have any specific questions on either of them, please feel free to leave them in the comment section & I will try to answer them.

Update on Daron
Daron is enjoying his time at Laurels of Kent. He has a new roommate now & they are two peas in a pod. They have the same crazy sense of humor, they enjoy watching the same shows, they are interested in the same things. His roommate makes sure that Daron goes to the dining room for lunch & supper. Most days Daron has breakfast in bed & then relaxes until the nurses get him out of bed & dressed. The administrator of the nursing room turned one of the day rooms into a man cave for the guys at the nursing home. Daron & his roommate got to help with some insight & some decorating. They enjoy hanging out down there as well.

Daron had an MRI done at the end of August. We met with his neurologist on October 11 to go over the results. So far, there are no changes to the MS. Physically he is still declining - his legs are the biggest issue for him. No changes are being made to his medication right now & he will continue to receive the infusion every 4 weeks. I am currently trying to get those moved to Grand Rapids so that he won't have to travel so far each month. Once they are moved, he will only have to see the neurologist every 6 months, unless there are changes to his health.

Prayer Requests for Daron
Please pray that we will be able to get the infusions moved to Grand Rapids soon. It will be easier on Daron & he won't loose an entire day for them.

Please pray that he will feel God's peace in his life each day. He is struggling with being so young & having to be in a nursing home.

Update on Taylor
Taylor is now in 3rd grade - that's crazy to think about. He will be turning 9 in a few months & is looking forward to that. He is having some behavior issues, but we are working through them as best we can. He was diagnosed with an anxiety disorder a few months ago. They just changed his medication to treat that, so we are in a limbo period right now. I am hoping & praying that this medication will help. It breaks my heart to see him struggling so much at such a young age.

Taylor is a very active young man & he loves being outside as much as possible. I don't know what he is going to do when it is to cold to go outside this winter. I am so thankful each day that I have my son. He is the greatest gift God could have given me.

Prayer Requests for Taylor
Please pray that his medication will sort itself out soon. Seeing him struggle breaks my heart.

Please pray that he will feel God's peace & comfort each day of his life. There is a lot going on with him that I don't feel comfortable sharing, but God knows.

Thank you again for your prayers, support & compassion. We are so blessed to have wonderful people in our lives who truly care about us!

October 13, 2012

True Friendship Along My Journey

I have a question for you...... What is your definition of a true friend?

"What is a friend? A single soul in two bodies."  -- Aristotle

I had never thought of it that way before. But if you really stop to think about it, there is one friendship that comes to mind that fits that description.......David & Jonathon in the Bible (1 Samuel 19 & 20). They had a true, deep kindred spirit friendship. King David said that Jonathon was closer to him then a brother. That speaks of a deep commitment to each other. It was such a deep commitment that Jonathon put his own life on the line to protect David from his father King Saul. Wow!! What a picture of true friendship. (If you've never read the story of King David & Jonathon, I highly recommend you read it.)

But what does that look like today? Are there really people who would be willing to suffer pain for someone who is not their spouse, child, sibling, parent? I would think there are. I have a few people in my own life that I hope would do that for me.

The reason I have been thinking about this lately is the journey I am on right now. I feel as though I have lost people in my life because they aren't comfortable with the journey. Maybe the road is to bumpy. Maybe there are to many obstacles. I don't know why, but there are people who have left me to continue this journey alone. A true friend won't leave when times get tough.

I am not pointing any fingers or calling anyone out. Please understand that. I am just voicing my concern over the loss of friendships in my life. I am forever grateful to the ones who have remained constant in my life through everything. I am grateful that they have chosen to continue to walk beside me through this difficult journey. They know who they are & I hope they know how much they mean to me.

To those who have had to leave the journey, I am praying for you. I don't know where God has led you & I don't know what has caused you to leave this journey. But I do know that God always has a reason for things that happen in life. He also has a reason for bringing people in & out of my life. I hope that God will bless you as you travel along the journey that God has you on. If our paths are to cross in the future, I will be blessed to have you back in my life.

To those who are still in my life, but are on the sidelines of this journey, please know that I am praying for you as well. I know that this journey I'm on is a difficult one & that it scares some of those in my life. I don't hold that against you anymore. I am thankful for your prayers & support. I hope that you will always be open to allowing God to work in your life. You never know, He may lead you to join me on this journey at some point.

I will continue to walk this journey that God has me on - even if I am only walking next to my Heavenly Father. I know that He will always be the One who will be closer to me than a brother. He has already promised that He will never leave me or forsake me. He is the One that I can always count on to be constant in my life. Thank You Heavenly Father for You unfailing love in my life!!!

September 13, 2012

The Craziness That Is My Life

The craziest thing happened the other day. I had to call the nursing home & voice a concern that I had about Daron. That led to a UA test being done to see if he has a UTI. It wasn't done as soon as I thought it would be, but it was done none the less. Daron thought I was crazy for asking them to do a UA on him because he thought he was fine. They told him the results on Tuesday & he called to let me know - they came back least that's what he said they told him. I got a phone call on Wednesday letting me know that since Daron had just given permission for them to call me with any changes. The nurse let me know that the UA results actually came back positive for a UTI & they were starting him on an antibiotic.

So, when will people ever listen to me & trust that I know things about Daron?? The last time he was acting funny - like on Friday - he had a UTI & it went septic so it ended up in the hospital on IV antibiotics. So when I talked to him & realized that he was doing the same things, I was worried & voiced my concern to the nursing home. Daron still thinks I was overreacting & he's fine.Thankfully they caught it - 5 days later - & started him on the antibiotics. Now I am praying that the antibiotics will take effect before he goes septic again.

That is the craziness that is my life these days. Trying to talk the nursing home staff into taking my concerns for what they are & actually listening. One of these days.....

September 5, 2012

Some Thoughts

I know that yesterday's post was a very emotional one. I know that some people felt the need to respond to it in their own unique ways. There was one comment that really touched on how much people truly don't understand me, my family, or the unique situation God has placed us in. I am not going to use names or tell you how I know this person, but I wanted to share their response with you. I will also share my response to them. My response was written many hours after reading the comment, & after lots of prayer & guiding from the Lord. At first I wasn't going to respond to this person. I was going to delete the response & figure out a way to block them. I was very hurt by things that were said. But God directed me to respond in a way that surprised even me. I didn't attack or go on the defensive side. I was again open & honest, like I am here in the blog. If I try to hide something or change the way I normally act, then I am deceiving everyone around me, I am lying to myself & I am not being true to the type of person God created me to be.

So, here is the response that I received **I was given permission by this person to share our conversation**:

OK been a while since we talked and I just read your blog for the first time in a long time because its emotional for me to read. And part of the reason I haven't reached out is because my feelings on things are in a direct betrayal of my life long friendship with Daron who was a friend to me when no one else would be and for that I will be eternally grateful. However I do understand that the person I knew is dead. That may sound mean and it is but is also the truth. A truth that you seem to be struggling with as well. I understand your struggles probably more than you know and the things that I am about to say I hope stay between us. You need to move on and do what you have to do for you and Taylor. The only way you can honestly do that is by divorce. I know you are afraid of this on several levels so I am going to touch on a few that you may be struggling with. First you cant be afraid of what people may think. You cant worry about things like that. You are not abandoning Daron at least not the one you married. And I do believe knowing Daron as I did he would want you to as well. You can not let guilt over what has happened ruin your lives and your future. You owe it to Taylor and you owe it to yourself. I am not going to lie there will be people who look down on you and may say that you have left Daron in his time of need but that's only because they do not understand the circumstances. You said to me before and you said in your blog a line about being a good christian wife. This is a little harder for me to talk about because although I am spiritual and I do believe in god I also don't follow the bible as close as some. I really don't believe that god would want you to be miserable just to stay married to a man who is abusive in every way imaginable and due to mental issues clearly not the man you married. The Daron we both love is never coming back. He is gone and although his body is alive his spirit isn't. The sooner you understand this and move ahead the better off you will be. You cant keep torturing you and Taylor to stay married to a man who isn't even close to the man you married just to look good for other people it isn't their life its yours and as a parent myself you have to protect Taylor the longer you put him through all this the worst it will be and the more damage is done. You have to do what you have to do. Not sure if this was any help but I am here if needed.

 After some time to think about what this person said, & some prayer as well, here is the response that I sent back:

I know that the Daron I married is never coming back, but I took a vow & made a covenant before God & I stand behind that 100%. I won't divorce Daron because I am going through a rough patch right now. I know there is light at the end of this tunnel, it is just hard to see right now. Until you have to deal with a loved one who has dementia or Alzheimer's, you won't understand where I'm coming from. God called me to this place & He will get me through it with the strength that only he can give. I know you don't follow the Bible much & that is probably why you can't truly see how this obstacle is strengthening my faith, my hope & my future as well as it is helping Taylor. God brings difficult times to us as a way to help us grow stronger. Plus, it teaches us something that we can use to help others who are struggling the same way. I know that there are people in the world who are going through something similar to what I'm going through. I know that if they were to stumble across my blog, they would be able to relate to it & see a true human being who is having ups & downs in life. God is using me in a way that I will never fully understand this side of heaven. My blog is a place where I can be 100% open & honest. There are members of my family, Daron's family, friends of both families, etc who read my blog as a way to stay up to date on how Daron is doing & that's great. But they also need to see how life is truly going in the Tilburt family & that is why I am so open. I didn't write that blog post as a way to get people to tell me to divorce my husband. I wrote it because I was led by God to spill my heart, my pain, my brokenness with people who only look at things from the outside & don't get to see inside the walls of my situation. I know that you are hurting yourself at the loss of a dear friend & I hurt for you. I can't even begin to imagine the loss that you must be going through right now. I am moving forward in the way that God is calling me to go -- married to my husband for the rest of his life on this earth & not regretting a single moment of it.


So, with all of that said, I do want to let everyone who reads my blog know this......I read each & every comment you leave. I do not post the ones that I find hurtful to me personally or to my family. I do not post the ones that are out in left field either. I will only post comments that are encouraging to myself & my family so that they can help others see my support team. I don't do this to be mean or anything. I know all about freedom of speech. I do this in order to keep my blog a safe place for me to be open & honest, as well as a place for my prayer warriors, family members & friends to stay up to date with my little family. God has most definitely put us in a unique situation in life right now & I fully understand that. I just want to make sure that I am surrounding myself with people who will stand beside me, pray with me, support me & love me for me no matter what I post on this blog. I love to open my email & see the comments that people have posted. There are some who post anonymously & that is fine. I don't need to have a name attached to every person who reads this blog. But please keep in mind that I do read the comments - good & bad. I also pray for the person leaving the comment & ask God to direct me in the best way to handle to comment. I hate to delete comments, but I really don't want to surround myself with negative people - that doesn't help my situation at all, it just makes things worse.

I am so extremely grateful that I have so many amazing people around me through all of this. I know that I can't make it through this without any of you. So please keep the comments coming! I don't respond to them all, but when I do, God leads me to speak my mind in love.

September 4, 2012

Will This Ever End? Will I Be Able To Move Forward?

***This post will be very emotionally raw. Just an FYI***

Today was a very rough day emotionally & mentally. Taylor started 3rd grade - which I am very grateful for & excited about. He was actually excited about it as well - which is a good thing. He loves his new teacher & is looking forward to each day. That wasn't a rough part of the day.

The rough part of the day started when Daron called & once again told me that I was visiting him after picking Taylor up from school. Ok, he did ask, but it was the way he kept pushing the subject (he has been calling non-stop since Saturday about when I will visit so he can give me a card). That annoyed me - again - & kind of put me in a bad mood. But I got over it when I picked Taylor up. I took him for ice cream & we talked about his first day of school. I loved every minute of it. Then I remembered we went to visit.

We were only there for 5 minutes & that was way to long for Taylor & I. That sounds crazy, I know, but it's true. Taylor got bored immediately & all of my hurt feelings from Saturday came flooding back & I just wanted to leave. So we left - both of us in bad moods like usual. For some reason Taylor & I end up in bad moods after we visit Daron. I don't know why, but it always happens. My mood took us to Clarksville - don't ask why because I don't know - which added a lot of wasted time to our drive home. That just made matters worse.

Long story short - I just want this chapter of my life to end so that Taylor & I can finally move forward. I am tired of being tired, bitter, angry, emotionally unstable, frustrated, hurt, manipulated, etc. This chapter of my life really sucks! Honestly, if I were reading the book of my life & I got to this chapter, I would return it & demand my money back. I can't even begin to fully explain what is going on so that those reading can understand. It is just to difficult & painful.....but I'll try.

When Daron & I were married Oct 26, 2002 (almost 10 years ago) he made a vow that he would always be here for me, protect me, comfort me, take care of me & now I feel as though that vow has been tossed into a wood chipper over & over again. I know that the MS is changing him, trust me I know. But this was not my idea of marriage. When my parents divorced, I promised myself that any children I have after I married would have a better life then I did. Personally, I think Taylor has it a lot worse then I did. When my parents divorced, I didn't really see much of my dad due to circumstances that I don't want to discuss. But Taylor is forced to visit his dad on a weekly basis at a nursing home that is b-o-r-i-n-g to an 8 year old boy. On top of that, he has to deal with an emotionally unstable Mom at home after each visit & phone call. How fair is that to a kid?!?

Then there's me - marriage is forever & I fully stand behind my vows. But, I don't remember this being a part of the "For Better Or For Worse" portion. I mean, I knew going in that Daron had MS & that is would get worse - I just didn't know that this was what was ahead. I hate to say, but if I had known I would have run out of that church screaming. But maybe that's why God doesn't show us what is in store. I will always stand behind my vows, but how am I supposed to be a good Christian wife to a man who is no longer living in the home & drives me crazy each time he calls?!?

I just want to figure out a way to move forward with my life & with Taylor's life. I feel like we are stuck in the sinking sand of the past & we will never get out of it. We need to be able to live somewhat normal lives (whatever that means). I am so emotionally drained from being stuck & trying to claw my way to the top that I can't even remember the last time I had a could hard cry & let it all out. That's insane! I'm not sleeping well. I'm not eating well. I don't want to be around members of my family or Daron's family - I'm afraid of all the questions that will be asked or the looks of pity, sadness & feeling sorry for me. I had to step down from a ministry at church that I absolutely love because Taylor is still in it & I am afraid of how I will react to him at times - also because I feel the Lord leading me to feast on the preached Word for awhile. That one was hard to come to terms with.

Will I ever be able to move forward with my life? Will I always be so emotionally stuck & drained that I snap at a pin drop? Will I ever feel like my "normal" self again? Will Taylor grow up to be a "normal" happy kid after everything that he's been through? Will I be able to be the wife that God called me to be? Will I always get angry when Daron's name shows up on my caller id multiple times a day? I Don't Know is the best answer I can some up with to all those questions. I know that the Lord will never left me go through something that I can't handle. He uses the difficult times in life to teach us to rely on Him completely. I know I'm not doing that & I desperately need to. I need to cling to my Heavenly Father & let him carry me for awhile. I need to accept the strength & grace that He so freely gives me each day. I know that, but I am so stubborn & strong-willed that I don't do that. I don't let Him carry me because I want to take the lead & go my own way. I don't accept the strength He offers me daily because I think I can do it myself. Boy am I wrong!!

I hate to say it, but I think I need a "break" from my husband so that I can focus on bettering myself. No I am not going to divorce him or leave him or anything like that. I just need to let his calls go to voicemail & leave them there. I need to let God teach me how to properly handle this situation that I am in with Daron before I self destruct or Taylor gets hurt. I know that sounds crazy & some people might think that I am committing a sin by doing this or that I'm shirking on my wifely responsibilities. But honestly, how can I be a Christian wife if I am angry all the time? How can I honor & respect my husband when I don't even want to be around him because I get soooooo incredibly angry, annoyed, hurt each & every time? How am I supposed to teach my son how to deal with his anger if I can't get mine under control?  So even though it sounds crazy & ridiculous, I think it has to be done. I will be spending a lot of time praying about this first, though, & make sure the Lord is leading me to do this. I don't want to continue to do things that are out of His will & plan for my life. Maybe after a good long cry & a great night sleep I will feel differently, but I don't see that happening anytime soon.

September 2, 2012

Bitterness, Anger & Other Emotions

This summer my church had different elective classes that we could go to. I chose to go to the one for women like I always do. The last few months we have talked about emotions, moods & how God can take control of them. It really made me stop & think about my personal emotions & moods.

I know that God created humans to be emotional people & that God is emotional as well (It says right in Genesis that He created us in His Image). I just never thought about it more then that. Our teacher (a wonderful woman) pointed out that our emotions are from God, but we allow sin to take control of them & that's how they get out of control. When we let God have full control over our emotions, we are happier, healthier people.

Each week the same though would go through my mind...."I am bitter & angry & I have every right to be. I mean, look at what I'm going through." But I learned that the bitterness & anger has gotten out of control. I never though of it that way. But looking back it makes total sense. I dread answering the phone when Daron calls (I have been tempted to take his phone away completely). I get upset when Daron asks me to visit him after I've made plans for my day. I get easily annoyed by Daron & the way he whines about things. I get upset easy with Taylor & loose my temper at the drop of a dime. The list goes on & on.

Now I am guessing that some of you are thinking "Boy she doesn't sound very loving toward her family." You're absolutely right. How can I be loving toward my husband & my son when I am bitter & angry all the time? I can't!! I know it sounds horrible of me to plainly admit that I get annoyed by my husband, upset with him or Taylor. But that is the honest truth. I don't think I should have to hide my true emotions from anyone who reads this. How else would you know how this situation is truly going if I hide everything?

There are a lot of times I go to church with a big smile on my face in order to hide the pain & hurt that I am experiencing. Today was one of those days. Daron told me that I ruined his plans & his day by already making plans for my own birthday yesterday. So that ruined my day & put me in a mood that carried into today. I had to pray hard in order to stand in front of people & sing. I didn't hide the hurt from God, just the members of my church family.

Plus there are times when I can't when I can't even cry anymore. I am so bitter & angry that the tears stay inside so that I don't look vulnerable or weak. I don't want people to see me cry or think of me as a weak person for crying. I know that sounds crazy, but it's true. Taylor doesn't even see me cry. I do understand that the lack of tears is hurting me inside & they will come flooding out at some point when I am in the house alone.

I guess to sum things can't always trust your own emotions. You need to hand them to God & give Him full control over them. You also can't judge a person by the smile on their face. It can be hiding a secret that you will never hear or a hurt that you will never understand. But, you can pray for those around you. God knows everything that we don't about those around us. God knows the deepest hurts & secrets of our hearts. All we have to do is pray for each other & let God handle the rest.

August 20, 2012

New Routines

Since it is the time of year to start getting back into the school schedule, I decided to make some new routines for Taylor & I. Last night we started the new bedtime routine for Taylor. It actually went really well. He didn't argue about not wanting to go to bed & he actually stayed in his room & went to sleep. That is a huge step for him. 

My new bedtime routine didn't go as planned. I need to figure out the best way to make sure I am in bed by 10pm so I can get the best amount of sleep possible. Either that or I just need to get out of bed when my body wakes up no matter what time it is. It's pretty crazy when I have my wake up alarm set for 6am & I wake up at 6:30am but then just stay in bed. Oh, well. I'm still working on it & I know that I'm not perfect.

This coming Sunday we will start focusing on the wake up/before school routine. I think that once Taylor gets the hang of the bedtime routine, the wake up routine will be easy. I might be kidding myself, but we will see. I mean, he has grown up a lot since this time last year. He requested that we wait a week before starting the wake up routine. I think he wants to squeeze every last minute of sleeping in that he possibly can. :-)

We have a few different routines that both of us have to get used to now. I have them saved on my computer & will be printing them off, mounting them on scrapbook paper & putting them in frames. That way we can use them like dry erase boards & each of us can mark off the things that we do. I got the idea from Pinterest. It's something that will be inexpensive & easy to do. Plus, Taylor will get to pick out the paper that he wants behind each of his different routines. I think this is the first time I have seen Taylor so excited to go to Hobby Lobby with me. :-)

Here is a picture to give you an idea of what I'm talking about:

Simple, easy & inexpensive!! That is awesome!

August 18, 2012

Another School Year Around The Corner

It is so hard to believe that my son will be a 3rd grader this year. It's also hard to believe that we are entering another school year without Daron at home. So may things have happened since Taylor started school a few years ago, but I think this is the hardest part for all of us.

I know that Daron wants to be able to see Taylor off to school each day. Last school year he would call just as Taylor was getting out of the car or right after I dropped him off. While it was awesome that Daron wanted to tell Taylor to have a good day, it was hard on Taylor. He know why is Dad is in a nursing home & talking to him before school would bum him out. I'm thinking that Daron will try & do the same thing this year, but how do I politely ask him not to?

1st Grade
Both Taylor & I know that this will be a make it or break it school year for him. Since he has had so many issues in the past at school, we have talked about changing schools. Taylor wants to go back to Excel this year because he has the teacher he wanted. He knows, though, that if there are any problems I will put him in a local school that goes year round. I know that a lot of the issues aren't fully his fault. There are certain kids that push him to the point where he explodes. We have also spent time working on that in order to help him have a better year.

2nd Grade
So my prayer for this year will be the same each day:
  • that Taylor grows stronger in his faith
  • that Taylor leans on the Lord for help in controlling his temper & attitude
  • that Taylor learns how to control himself when kids are pushing him to do something he knows he shouldn't
  • that Taylor will stand up for himself in a proper way & not get in trouble for doing so
  • that he will have a wonderful 3rd grade year
I still cannot believe that I have a 3rd grader already. It seems like just yesterday he looked like this:

August 14, 2012

Our House Has A New Look

Well, I did it. I painted the Living Room, Dining Room & Kitchen in a week. I am so thankful that it is done & it looks amazing!! Here are a few photos of the new look.
Here is the Living Room/Dining Room wall before.

Here is that same wall after I painted. There is a phrase under the scroll work that says "May all who enter as guests, leave as friends"
My new curtains. I have a matching set in the Dining Room on my slider door.
I know the love seat looks kind of blue, but it is really sage green.

Here is the Dining Room wall by my table before.
Here is that same wall after. It is now a family picture wall.
Close up on our family picture. The phrase says: "Family Where Life Begins & Love Never Ends"
This picture shows the flower pattern on my kitchen walls. I am so glad that is gone!
Here is my kitchen after. I repainted all of the cabinets as well.

August 7, 2012


I'm currently painting my house & that got me thinking about all the changes that are taking place in our family. It is interesting how changing the way your home looks can point out other changes that you didn't even know were happening. So many things have changed in the Tilburt family, but I'll only list a couple.

The biggest change has been this past year with Daron being in a nursing home. It is still hard to believe that it has been a full year. There are changes taking place within that situation as well. As time goes on, Daron's health is declining. That is hard to watch as his wife. That change is the hardest one to handle. Someone asked me the other day if I am afraid to be alone at home. My response was, "No. I have two big German Shepherds at home." Truth is, I hate being alone. I know that my dogs will do anything & everything to protect me as best they can. I also know that I have some great neighbors who will help me out. But, I am a married woman whose husband is no longer in the home. I have to drive 30 minutes to Lowell to visit him. My son is having a rough time as he prepares to enter adolescence without his Dad. I know the Lord gives me the strength I need each day & I am so grateful for that!! I just never imagined in my wildest dreams that I would be 30, married, have an 8 y/o & have my husband living in a nursing home.

Another change is Taylor. He's only 8, but he is starting to enter that crazy stage in a boys life - adolescence. How am I gonna deal with this one? Prayer - Lots & Lots of prayer!! Thankfully Taylor's medication is helping him a lot. I never thought that I would medicate my son for any reason; but considering the situation, I wanted to do what I can to help him. There have been some rough patches along the way, but I think we are on the other side of it (at least for now). The best thing to come out of it is my relationship with Taylor. I am so thankful that we have each other through all of this.

I am also thankful that my relationship with the Lord is another wonderful change. I have grown closer to Him & have learned that I really can lean on Him for anything. This whole thing has caused me to realize that I took my relationship with the Lord for granted. I mean, I got to a point where I knew that God will help me no matter what - all I had to do was ask. But that's where I left it. I would ask for things as I needed them. I would pray when I felt it was necessary, but that's where it ended. Now I feel like I am in a constant state of prayer & praise. That is the best feeling!

So, while I return to painting my house & changing the way my home looks, I will remember that I have made some changes in my own life. Some good, some amazing.

July 27, 2012

Appointment Update

Made it across state & back safely....thank you for your prayers!! Taylor enjoyed playing with his cousin while I was with Daron at the VA. I know that he is looking forward to spending an entire week with this cousin soon.

Well, the doctor didn't have to much to say that he hasn't already said in the past. He did stop one of Daron's medications - it isn't useful anymore. He was kind of surprised when he asked Daron to walk a little bit. It took both adult male doctors to help Daron stand up from his wheelchair. He made the comment to the other doctor that Daron used to be able to stand up on his own & take a few steps. Now he can't even stand up on his own from his wheelchair. I was glad that the doctor is finally seeing what I have been seeing (or at the very least he his acknowledging it).

This appointment reminded me why I stopped going to these with him. Each appointment makes me sad because you can really see how much he has declined month to month. Plus, it is tough having to repeat things every month to a different medical student. I know that these appointments are good for him to go to because the doctor needs to know how he is doing. It just saddens me to know that he is getting worse & that he doesn't want to acknowledge it himself.

Please continue to pray for Daron as time goes on. He is getting settled at the nursing home & he likes his new roommate (who also has MS).

July 25, 2012

Another Appointment

It's hard to think that 4 weeks have gone by already. Now it's time to head back across state to sit by Daron's side while he see's the Neurologist & then has his infusion. Please pray for safety as I drive across. Also, please pray that Daron will be open to all of the help the VA staff can provide him. The last few times he has been there, he has fallen. I am praying that he doesn't fall this time! Thanks :-)

July 5, 2012

One Year Ago Today.....Hard To Believe

As I think back to July 5, 2011 it's hard to think of what life was like before that day. I know most people would say that after they graduated from High School, graduate from college, get married, have kids, & have grand kids. But for me, life took a drastic turn on July 5, 2011. That's when everything about the life that I knew & loved to that point would change.

I can remember that it was normal day - I was babysitting, Daron had a doctor appointment at the VA, & the world was still captivated on the Casey Anthony trial. I only remember that part because I heard the verdict at the VA clinic about 20 minutes before everything changed. I remember thinking to myself, "this day isn't turning out to be half bad." I remember having an argument with Daron on the way home, but I don't remember what it was about....probably something ridiculous like normal. Then it seemed like everything went into slow motion. Daron got really upset over something I said....started opening the van door while we were on the highway....couldn't get his seat belt undone....Taylor screaming & crying in the backseat....then the van door closing. I don't know how long exactly that whole scene took to play out - probably just seconds - but it seemed like it took forever.

Then I remember turning into our community & telling Daron that he had a choice to make. I remember telling him that I would drop the child I was babysitting off, take Taylor to my Mom's house & then I would be back. I told him that in that time he had a choice to make - he could choose to go to his parents house or he could choose to go to the Battle Creek VA. But I also told him that if he didn't make the choice then I would because he needed more help & care then I could ever give him.

I left, took the little girl home & took Taylor to my Mom's house. After I dropped Taylor off, I remember calling the associate Pastor at my church & telling him what had happened. When I got home, Daron had a small bag packed & told me that he would like to go the Battle Creek VA. I said OK & we left. I remember stopping to get him some dinner & then I remember the long silence in the car on the way. The drive was only an hour, but again it seemed like it took forever.

When we arrived at the VA, I went inside first to make sure we were in the right spot. I remember shaking when the nurse asked me why I was bringing Daron in & I had to tell her that my husband had just tried to jump out of a moving van on the highway. That led to some paperwork that I had to sign just in case he refused to be admitted. We were only in the waiting room a few minutes before he was called back. While we talked to the nurse & then the doctor, Daron kept saying that he didn't need help & he was only there to have his medication adjusted. I remember thinking to myself "why is he in such denial? Does he really not think that this is a big deal?" When the doctor asked him why he did it & if he really thought he could have safely jumped out of the car, Daron said that it wasn't a big deal & that he would have been fine. Looking back, I can see just how much his brain & thinking patterns were truly affected by the MS.

They found a room for him in the psych ward & we said our goodbyes. I took his phone, wallet & belt with me. When I got to the car I knew that I had to call my mom, my friend & my associate pastor & let them know what had happened. After getting off the phone I sat in the parking lot & cried. I knew at that moment that my life would never be the same & I grieved for my husband, my son, my family & myself.

The next day I got up enough courage to call my in-laws & tell them what had happened & where Daron was at. I still don't remember the full conversation with them or their reactions to what had happened. I was still numb emotionally myself & couldn't focus on the emotions of others. I went through the next few days on auto-pilot. I remember that I had to take a bag of clothes to Daron at some point shortly after everything had happened. I remember my Mom took Taylor for the night so I could pack Daron's clothes & get on the road early. I remember the gut wrenching sobs that emitted from my soul as I packed my husbands clothes. I knew at that point that my husband was never coming back into our home & that my marriage & our family would never be the same. I have only cried those gut wrenching sobs a few times since that day.

It is still hard for me to believe that today marks the first year since everything happened. So many things have happened since July 5, 2011 that it feels like it has been 5 years or more have passed. I know that there is a reason for everything that happens in our lives. I know that by the time I am able to find out why this is happening to my family, it won't matter because I will be at the feet of my blessed Savior. I have to keep trusting that the One who made the earth knows exactly what He is doing in my life. I have to trust each day that He will give me the strength that I need to get through that day. I have to trust that each difficulty that has come into my life in the past year has not been in vain. I have to trust that each difficulty that will come into my path in the days ahead will be used for molding me into the beautiful creation that He has in mind. I have to trust all of these things because this world is not my home & I am just passing through to my eternal home.

So many things - good, bad, horrible, devastating, amazing - have happened in the past year. I have to always remember to give those things back to God so that I can move forward & make this next year a little better than this past year. God has something in mind for my life & I have to continue to strive for it & move forward with His help, strength, grace & peace. I will admit that at times (a lot of times) it is easy to say that then it is to actually do it. But I know that I cannot make it through this crazy adventure with Him leading me all the way!

July 3, 2012

Appointment Update

Thank you all for your prayers. The trip across state went well. I left my in-laws house just before 8am & got to Ann Arbor about 10 minutes before Daron did. We made it to his appointment with the neurologist on time. But as usual, we sat there for over an hour waiting for the neurologist to come in. When he did come in, the meeting was short. Since Daron has been approved to receive his infusions closer to home (Thank You Lord!!) he will only have to see his neurologist every 6 months.....unless something comes up. He has an MRI scheduled for the end of August & he will see the neurologist in September to discuss the results. After the September appointment is when the 6 month visits will start. Now I just have to call the two local places & see which one will be able to accommodate him.

After the neurologist appointment we went for his infusion. Even though we got there at Noon, they didn't start the IV until after 1pm (they let him eat first). They ended up calling the IV team in to start his IV. So the IV didn't fully start until after 1:30pm. Then the infusion takes an hour to run & is followed by an hour of observation time. We didn't leave the infusion area until 4pm or shortly thereafter. Before leaving the room, Daron needed to use the restroom. After 45 minutes, I checked on him & had to go find the nurses because he had fallen. Thankfully he wasn't hurt - except for a scratch on his knee. So after that, we were finally able to truly leave & go wait for his transportation to come get him. He transport arrived about 4:55pm & both of us were finally able to head out of Ann Arbor. I met my in-laws in Fenton to pick up Taylor & get something to eat. Taylor & I finally got home about 9:30pm after having to make a few potty stops. When Taylor & I got home, Taylor went straight to bed & I followed shortly thereafter. It was a very loooooong day to say the least.

Thank you again for your prayers. The only difficult traffic I ran into was when I was headed to Fenton. It was bumper to bumper stop & go for a little while. But of course that was because it was 5pm rush hour & I was heading North like everyone else. Other then that, out travel went well & I am very thankful for that.

June 27, 2012

Another Doctor Appointment = Another Trip Across State

Wow...has it been three months already?!? Daron is scheduled to see his neurologist tomorrow morning in the Ann Arbor VA. That means that I get the joy of driving across state. I am going to try to make it to all of the appointments with the neurologist every three months. That way I can stay up to date on what his doctor has to say & can help the nursing home by letting them know. I am hoping that this appointment will be a quick one before his transfusion. Normally, we can sit in the room waiting for the doctor for an hour or more. I am also praying that the doctor will once again be honest & open with me on how Daron is actually doing. I know that doctors have to try & hide things so they don't scare the patient....but I need to know exactly what is going on. I don't like being surprised when it comes to my husbands health.

Thankully, my in-laws were willing to let Taylor & I stay at their house for a day. This way Taylor can play with his cousin & I don't have to get up at the crack of dawn to leave for Ann Arbor. It will be a less stressful day for almost everyone involved. My father-in-law might be a little frazzled by the end of the day. I mean, taking care of an 8 yr old & a 5 yr old aren't easy for anyone of any age. :-) But I know he loves to spend time with his grandkids no matter how crazy they make him.

Please join me in prayer for:
--the drive from my in-laws to Ann Arbor. I have to go through Detroit during the morning & evening rush hours. Grand Rapids traffic is crazy, but Detroit is pure torture as far as I'm concerned.

--Daron's transportation to Ann Arbor. Last month the transport company came to our home, instead of the nursing home, to pick him up. Thankfully I was there last time, but I don't know what will happen if they go there & no one is there.

--my father-in-law as he watches Taylor & my nephew. They are both giant balls of energy & can wear you out just by watching them.

--the appointment with the neurologist. Please pray that the doctor will be open & honest with everything going on. Also, that he will continue to listen to my concerns as well as Daron's.

--the transfusion. Please pray that there won't be any complications.

Thank you all again for your prayers, care & support. It really means a lot to my family!!

June 23, 2012

Something Else I Didn't Think I'd Have To Do Yet

Well, this year has been full of a lot of things I didn't think I'd have to do or deal with yet. On 6/22/12 I added something else to that list. I called a funeral home to look into prearranging Daron's funeral. Please don't think this means he is going to pass anytime soon. I just want to make sure that I don't have to worry about it when he does pass into glory. I have watched to many of my loved ones scramble at the last minute to pay for a funeral & I don't want to have to do that when the time comes. Honestly, I am thinking of prearranging my funeral as well so Taylor doesn't have to worry about it when he's older.

I was actually surprised at how inexpensive the how thing will be. I was sitting here thinking that I would have to spend $10,000 or more on Daron's funeral. But because Daron & I have already talked about what he wants me to do, I don't have to worry about that giant cost. I am so thankful that I made the call, but it was emotionally & mentally draining. A 30 year old wife should not have to call around for pricing for her 40 year old husbands funeral arrangements. But, the more things I do now when my brain can comprehend what I'm doing, the better. At least I will be going into this with a clear head.

After that phone call, I came to a conclusion......everyone should try to prearrange their funeral if possible. I know that people move & they aren't sure where they want their body to be buried just yet, but you should at least call around so you can start saving for it. Now that I know how much I need for Daron's funeral & that I can make payments in order to pay it off ahead of time, I know that will be one less thing to worry about when the Lord calls Daron home. Plus, I can start setting money aside for my own funeral so that Taylor won't have to scramble to get the money together when the Lord calls me home.

Ok, that's enough talk about death. :-) I just wanted to keep to the spirit of my blog - open & honest with everyone. Trust me, that is harder to do than any of you can imagine!

June 21, 2012

Father's Day

Taylor & I got to hang out with Daron at Laurels for a Father's Day BBQ. They provided all the food (good food too....steak, brats, burgers, hot dogs, beans, coleslaw, pasta salad. All of it was yummy). The had tents & chairs set up in the courtyard for everyone. Even though it was a warm, humid day we enjoyed sitting outside. There is a mommy duck with 11 little ducklings living in the courtyard. Taylor had fun feeding his hot dog bun to the ducks. They are so used to people that they just laid in the walkway & watched you walk around them. Taylor was able to get closer then normal to the family before mommy quacked at him.

When the heat got to be to much for Daron, we went back & hung out in his room. He has a new roommate who also has MS. I got to meet the roommates wife for a short time. Since she is older then I am & her hubby has had MS longer then Daron, I would love to be able to sit down & talk to her. I think I could learn a lot from her when it comes to being an MS spouse. Hopefully I will be able to meet her again in the future & then ask her if I can pick her brain.

I'm glad that Daron, Taylor & I were able to hang out for a little while during Father's Day weekend. It was a fun time for all of us!!

June 13, 2012

4 years ago......

.....I started babysitting for a friend of mine. Her daughter was 6 months old at the time. I have watched that little girl grow up, learn to crawl, learn to eat solid food, learn to walk, learn to talk, learn to run, learn to use the potty. I got to go through all of the firsts on childhood again with her. She has been like my daughter/niece for the last 4 years. Taylor has thought of her as his little sister for the last 4 years.

I also started watching the cousin of this little girl 3 months ago. That was fun as well. Watching him learn to smile, roll over, sit up. Making him laugh & learn to make faces. Just having a baby in the house 2 days a week was interesting & fun all at the same time.

Now that time has come to an end. After going through everything with Daron - while watching this little girl - was tough. I wouldn't change anything....but it was time for the babysitting to come to an end. A lot has happened over the last 4 years - not just for my family, but for my friends family as well. Now I get the "joy" of looking for a full time job that works around my availability so that I can still spend time with Taylor. I loved babysitting, but I do need to think about the future for my son & I.

So today was a bittersweet day. Taylor & I had a lot of fun playing the kiddos. When the car pulled up at 4pm to pick both of them up for the last time, I was filled with mixed emotions. I was relieved (lol) that it was time to head home, but I did tear up when I came back in the house. I mean, I love both of those kiddos like they were my own. I know that I will be able to see them because we are all friends. But I won't see them 2 days a week every week anymore.

Another chapter of the story of my family has come to an end. That just means that there is a new chapter beginning & I can't wait to see how is turns out. The Lord has had a lot of twists & turns through the story of my life already. I don't even want to imagine what this nest chapter has in store.

June 10, 2012

Pondering the Past Year's Events

On July 5th (I know it's a month away) it will be a year since Daron went into the nursing facility. In the last year a lot of things have happened, a lot of emotions & moods have been felt, & a lot of tears have been shed. This entire year has been difficult for everyone involved. I know that I am not the only one who has had issues over what took place. With that said, I'd like to share some of my personal feelings from this past year.

After Daron was placed in the CLC in the Battle Creek VA, I remember packing a suitcase of clothes to take for him. I remember crying with each & every item of clothing I placed in that suitcase. I remember crying out to my Father in Heaven asking Him to take those feelings from me. I didn't want to feel that way. I knew that Daron was getting the care that he needed, so I didn't want to feel like I was loosing my husband. I didn't want to feel sorry for myself or my family.

When I was told that Daron had early on-set dementia, I cried once again. My mom worked with dementia patients in the past & I knew what I was facing in the future (near or distant didn't matter). I knew that the days ahead were going to be tough as his mind began to fail him. I knew that at a some point he would forget who his family is. I was also upset over this diagnosis - for all the same reasons. I wasn't ready to go through all of that. Once again I asked God to take those feelings away from me.

When Daron was moved to Laurels of Kent I cried yet again. This time some of those years were happy tears. I was glad that he was closer to home. But, I was worried about him being closer to home. My fear came true one day when he called & said a friend had come to visit him & was bringing him to the house. I freaked out. It wasn't that I wanted him to come to the house. I freaked out because Daron was constantly saying that he was going to come home no matter what the cost. I was worried that this was going to happen & that I would have force him to go back to Laurels. I was worried for him because I wasn't sure how he would handle coming to the house & then have to go back. I worried because I didn't know this friend & I didn't know what would happen. Since that happened, there have been more times when Daron has been close to coming to the house. Every time his parents visit him & take him out for lunch, he calls me & says that his parents are bringing him home. I have had to trust his parents to not bring him home. They haven't brought him to the house & for that I am very thankful.

Every time Daron calls me, I worry about the conversation & what's going to be discussed. 9 times out of 10 we have the same conversation over & over & over again. Those conversations are always about coming home, how he feels as though I dumped him, how he feels as though I don't love him because he is in a nursing facility, how he wants to come home & doesn't care what his doctors have to say, & so many other things that I don't feel comfortable mentioning.

Over that past year, I have allowed my emotions to take control of my daily life -- that's not a good thing. I know that God made humans to be emotional being, but I have been overly emotional & that is not a good thing. Hindsight is definitely 20/20 & that has never been more true. Looking back over this past year, I have learned that I need to let things roll off my back a lot more. I need to focus on my relationship with God a lot more & in turn I will be able to get a better handle on my life. I need to focus on Taylor & help him focus on his relationship with God as well. Above all I need to focus on my relationship with Daron in this new phase that we are in. Our marriage will never be the way that it was a few years ago. That phase is done & I need to learn how to make things work in this new phase. I know that with God's help I can get through everything.

May 16, 2012


There are certain things that make this Mommy very unhappy. Having a sick 8 year old is one of them. Taylor started running a fever on Friday night & it lasted until Tuesday night. That was crazy. I sent him to school on Monday - his fever did go away on Sunday (or so I thought) - but he came home around Noon. Then I took him to the doctor & he was put on some antibiotics. I am just thankful that he is feeling more like his normal self.

I was sick myself, but mine was caused from allergies that landed in my sinuses & messed them up. It drove me crazy! I am thankful that both of us are feeling better. Now it's time to try & air out the germs inside the house. Here's hoping that I can open the house up again tonight & tomorrow morning - when the temps are cooler & there is a nice breeze.

April 24, 2012

More Changes

A week ago I had to take Taylor to see a child psychologist. I took him there in order to get another opinion on what is going on with him. I also took him there to see if there is something more going on with him mentally. After talking with the doctor for almost an hour, we left with a diagnosis of Anxiety caused by his environment. I wasn't surprised by the diagnosis considering what has been going on the last few years. Even though he's only 8 years old, he has been put through the ringer mentally & emotionally. I am just glad that he wasn't diagnosed with depression or bipolar.

We also left with a prescription for an anti-anxiety/anti-depressant for him. He just took his first dose tonight. Now I am praying that they will help him sleep easier, help mellow him out a little bit, help him remain calmer while at school & over all help with this mental well-being. He is such a smart child with a bright future ahead of him. I don't want something like this to get in the way of him reaching his full potential. Thankfully his anxiety is not debilitating or anything like that. He is a very out-going young man & I am thankful for that.

Please join me in praying for my son as he adjusts to the new medication. Please pray that he will be able to handle all of the changes that will occur within him during this time. Please pray that I will be able to make this transition time easy & low stress for him. I know that I have to remain his mom & be in charge. But I also don't want to cause anymore anxiety for him while he adjusts.

April 13, 2012

A Not-So-Good Doctor's Appointment With A Pretty Good Ending --- I Think

I took Daron to see his neurologist on April 12th in Ann Arbor. The appointment was to discuss the possibility of Daron ending his Tysabri infusions. Daron has had to go to the Ann Arbor VA once every 4 weeks to have the IV infusion of this medication. It has helped keep the flares at bay & it apparently healed the newest lesions (that just means that it repaired the lesions on the nerves in his brain that had not had a chance of destroying the entire nerve).

Anyway, here is the conclusion of the appointment: The doctor strongly advised us that Daron has to stay on the Tysabri or he will have a massive flare that could possibly leave him permanently bed bound & take away the last bit of ability he has in his arms & legs. It could possibly even shorten his life.

Not something you want to hear. Personally, I was hoping that Daron would be able to come off the Tysabri & start a new drug. But, I don't want to do anything that will risk his health & well-being either. The doctor did make sure to really point out to Daron that this drug is Not a cure & it will Not reverse the damage that was done from his flare in January 2009. With that said, the only thing it will continue to do is keep new flares from happening. In the meantime, the damage done by his flare in January 2009 will continue to take it's toll on Daron's body. That flare damaged many nerves in his brain & therefore took away his ability to walk with stability. He has muscular strength, but his legs are not going to be able to stabilize him & allow him to walk.

After talking with the doctor, I realized that the January 2009 flare did a lot more damage then I had first thought. I mean, I have been blaming the Tysabri for making Daron's health go downhill. That wasn't the case at all. It was the flare that started the snowball effect & now there is no reversing it. I hate trying to look back & say "what if I had just forced Daron into seeing the neurologist when he had that flare? Would he still have gotten to this point? or would he be better & at home?" I can't look back though. Everything that happened back in 2009 happened for a reason. I know that because I know that my God won't lead my family through something that we cannot handle. I trust that everything that has happened in my family's life has been for a greater good. I also know that I will never understand what the greater good is this side of heaven - & when I get to heaven it won't matter enough to ask about it.

So, while I am not thrilled with the outcome of the appointment or the things that I had to hear; I am glad that I will get to have my husband around for a while longer. Now I just have to continue praying that God will open Daron's eyes & allow him to see the good around him. He is so focused on the negative side of being in a nursing facility - out of the home, away from family, miserable, etc - that he is missing out on the wonderful opportunity that he has to be a light in Laurels of Kent. I just continue to pray everyday that God's will be done in my husband's life. I continue to hand my husband back to the Lord & trust Him to do what is best in Daron's life.

Will you pray with me that all of this will work out within God's perfect will?

April 3, 2012

Day Trip

On April 2nd, Taylor & I took a Day Trip to the Creation Museum in Petersburg, KY. We had an amazing time & we learned a lot of new things. We also got to bond as mother & son a lot while in the car. If you have never heard of the Creation Museum, you can check out their website here. They are completely based on the Creation account & teach you about the 7 C's of History - Creation, Corruption, Catastrophe, Confusion, Christ, Cross & Consummation.

Here are a few pictures from our trip.....

There are a lot more to see. If you would like to view them, visit my Flickr site here.

March 30, 2012

Our New (to us) Car!

I am so excited to introduce you all to the newest member of our family. "She" is going to help us on our all of our journey's on the road! Taylor & I have chosen to lovingly call "her" Perry the Catmobile (Perry in honor of Phineas & Ferb's pet platypus & Catmobile was what Daron came up with). The shape does resemble Perry the Platypus (see the last set of pictures)....LOL

After 2 weeks of intense research on my part - comparing "her" to other vehicles, searching local dealership websites for the best price on a used one, gas mileage, etc....We welcomed "her" into our family on March 27, 2012! Here are some photos of our newest member -- a 2009 Ford Flex.

Taylor & I with Perry after bringing her home!
Taylor thinks Perry is "Awesome" & "Rockin"

Perry the Catmobile!!

Driver & Passenger Seats - Yes, all the seats are leather. I was iffy at first, but this will make it easier to clean them.
2nd Row of seating

3rd Row of seating-- Holds 7 passengers total comfortably!!

Another View of Perry the Catmobile!

Ok, I had to do a comparison picture so that you knew what Taylor & I were talking about. Here is why we call her Perry. Take the tail off of  Perry the Platypus & you have our car. LOL No I am not going to paint it to match Perry the Platypus.

March 28, 2012

Sad To Say Goodbye

My prayers are extended to the Taylor/Antis family. Daron's Grandma, Dorothy (Antis) Taylor passed peacefully in her sleep on March 23, 2012. She was a wonderful woman who loved her family & her Lord more than anything. She has now been reunited with her beloved husband & I am sure that she is happy & at peace. Click here to view her obituary & leave a message or prayer for the family.

The funeral was held on Monday March 26 in Fenton, MI. Daron was able to attend (Thank you again to Uncle Jon & Aunt Caroline for taking him). He was glad that he was able to say goodbye as well as see family. I am glad that he had a good day & was able to be there. I am sorry that Taylor & I were not able to attend due to different factors that kept us at home.

Below are two pictures of Grandma Taylor from our wedding.....

Picture from our wedding with Grandma Taylor.

Grandma Tilburt (left) & Grandma Taylor (right) at our wedding. They are both in Heaven now.

March 20, 2012

Trying To Keep A Positive Outlook......But It's So Hard!!

Today started out wonderfully. There was a beautiful sunrise!! I got to babysit my favorite 4 year old & one of the cutest 3 month old's ever (Sorry Jen.....I have to say my nephew is a little cuter)!! Taylor had the best attitude on the way to school - which is rare!! I was gonna have an awesome day.

Then the phone rang......

I received a phone call from the social worker at the VA who is in charge of the contracts between the VA & nursing facilities - like Laurels of Kent where Daron is. I hadn't talked to her, so I answered the phone with a happy "Hello!" That's when my smile faded & the shaking started. She told me that I have to fill out the application to the Vets Home & turn it in to get Daron on the waiting list.

Ok, before I go on, let me explain more of the phone call. When I answered the phone, she asked me if I had received the application from the Battle Creek social worker in the mail. I said that I had, but that I had destroyed it because Daron is not going to be moving to the Vets Home. Apparently, Daron & the Battle Creek social worker had filled out the application together prior to his move to Laurels of Kent. He had been told that the move to Laurels was only short term & he would then be permanently placed in the Vets Home. Well, I had no knowledge of this taking place & when the application came in the mail, Daron did not remember having had that conversation or filling it out. So that's why I destroyed it.

I had told the staff in Battle Creek that his move to Laurels had to be his last move due to his dementia progressing. I mean, he takes a little while to adjust. But the VA social worker I talked to this morning told me that was never agreed upon & he actually doesn't fully meet the state requirements for Laurels. I told her that if I had known that prior to his move, he would have staying in Battle Creek until he did meet the requirements for Laurels. I only wanted him to move once.

Unfortunately, I did dump all of the negatives from Daron's care at Battle Creek on her & was rude. I did apologize & explained that I am confused as to what is truly going on because I was never included in anything while he was in Battle Creek. I also explained that Laurels is a good fit for him right now & I would rather he stay there. But......since he doesn't fully meet the requirements, he can't stay there. Now we have a walk through scheduled for Friday afternoon at the Vets Home & I have to turn in the application to get him on the waiting list.

Does anyone realize that while he is on the waiting list he will get more adjusted & settled at Laurels?? Does anyone realize that after he is adjusted it will be difficult for him to move to the Vets Home?? Of course not!!

Ok....Ok.....let me make something clear.......I am a HUGE supporter of Veteran Health care. I have never had any issues with any of Daron's doctors or the care that he has received at the VA. I only have a problem with the lack of communication & disregard for Daron's safety that happened at Battle Creek while he was there. That is my huge issue & concern. He got great care otherwise & was well taken care of. However, there is a massive difference between the care he received in Battle Creek & the care he is getting at Laurels. The care is 1,000 times better & I am so happy that he moved. I really don't want to see him have to move again due to a technicality that could have been cleared up a month ago if there had been proper communication between the staff at Battle Creek & myself!!

But what am I supposed to do now?!?!? Well, I am going to contact some people high up in government & see if they can help me keep my husband at Laurels & keep his contract between the VA & Laurels. I am not going to release the name or names of the people I will contact, but I am going to contact them. I need to be Daron's biggest advocate for his care whether the VA likes it or not. If I don't then who will?!?!? Daron is my husband & I will do anything & everything in my power to make sure he gets the best care possible!!!! I don't want to be the complainer, the nag or the annoying wife who makes everyone upset. I just want to do everything I possibly can to get Daron the best care. I did that while he was in Battle Creek & they moved him to Laurels. Whether it was to get him the best care, get him closer to home or just to get rid of me, I don't know. All I know is that my annoying, strong-willed attitude pushed their buttons enough that it happened. Now I get to do it all over again in order to keep him at Laurels.

Granted, I will visit the Vets Home & get Daron's opinion of the place. But if he says he doesn't like it or doesn't care one way or the other......I will fight to keep him in Laurels!!

Please pray that the Lord will give me the right words to say & the proper attitude through all of this.
Please pray that everything will happen according to God's will - that is the most important thing through everything that is going on.
Please pray that God will be glorified through my attitude & my words as I go through this process.
Please pray that God will open the correct doors, & direct me to the correct people to help me through this situation.

March 16, 2012

Interesting, Crazy, Emotional

Those are the 3 words that best describe this say the least. Part of this post might sound like complaining, but I am venting how this week has made me feel.

On Monday, I got to hang out with my dear friend Deb. I love you tons. I was so excited that she was able to come over & see how I have massively rearranged my living room & dining room (I will post pictures, don't worry). We got to sit & chat for a little while. I always enjoy having girl time with my dear friends.

Shortly after she left I got a phone call from Daron asking me if he could come to the house. I tried to explain to him that I was cleaning from the hectic weekend (don't even ask) & that I wouldn't be able to make it work for that day. Plus, I loving reminded him that he needs time to adjust to the new environment. Well, he told me that a buddy of his had come & picked him up & that he offered to bring him to the house. I'll be honest......I WAS FURIOUS!!! First, I had only very briefly met this friend of his. Second Daron's parents & I agreed that he need time to adjust -- that meant staying in the facility for a month & having all visits remain there.

So I calmed down & let him come over so I could meet this friend. Also, I wanted to tell the friend in person that I was worried about Daron doing that. Thankfully he understood where I was coming from & agreed to contact me on facebook to set things up in the future. I was only worried because Daron is in a wheelchair & has dementia. That in itself makes his decisions hard to trust at times. I know that the friend had good intentions when visiting Daron & was not mad about that. I was just upset that Daron requested that of someone & then expect me to be on board with it as well. This is just a new phase of life I guess.

That was just the start of my week.

Tuesday & Wednesday I spent babysitting all day -- I love the 4 year old that I watch & now I get to watch her 3 month old cousin....a little cutie!! Wednesday night was AWANA - the kids were crazy from this nice weather we have been having. Thankfully, we took them outside for games to try & release some energy (didn't quite help).

Thursday I babysat for part of the day & then ran to Lowell to pick up Daron's dirty clothes. Just before 3pm I received a phone call letting me know that Taylor did something that got him suspended from school for Friday. I won't go into details, but I was very hurt, frustrated & mad about what he did. After picking Taylor up we had to go to Lowell to take Daron's clothes back to him. We weren't there for long since Taylor had gotten into trouble (plus I didn't want Daron to find out about what Taylor did. There's no point in telling him something that will upset him). When we left we decided to go to Millennium Park with my Mom & walk the trials for a little while. That helped me to calm down & it helped Taylor release pent up energy.

Today......plans changed drastically & I wasn't thrilled, but I dealt with it. I wasn't supposed to babysit, but was asked to at the last minute. With Taylor being home from school I knew it would make for an interesting day. That was an understatement. While trying to punish Taylor, I ended up having to take him to my Mom's house so that he could help her as punishment. I just needed a Mommy timeout from everything having to do with Taylor & his suspension. Plus, I needed a way to take some things out of his room without him being home to whine about it.

I am soooooooo incredibly thankful that the Lord never takes a timeout from me when I disobey. That is something that I have to work better at. I end up getting so upset & frustrated with my son not listening that I have to remove myself from the situation before it escalates. If I let it get out of control on my end, then we are both in hot water. I know the Lord doesn't like it when I disobey, but He never leaves me on my own to figure it out. He walks beside me & lovingly guides me to do what is right. He also walks with me & punishes me along the way for what I have done wrong -- in a loving way. I am striving to do this same thing with my son. Most days I fail drastically because I am a sinful parent myself. Other days I am able to keep control & things work for the best. I pray that I will continue to grow in this area of my life with my son. I just need to remember that I cannot make it through this situation or this life without God's help every step of the way!!

**By the way, Taylor is standing right next to me watching me write this. He has made a few comments along the way. I hope that he has realized just what a sinful nature can cause someone to do in the heat of the moment. Plus, I hope that he realizes that God is always walking beside him & that He alone with help Taylor remember to calm down before reacting. I love my son!!!**

March 10, 2012

Transition Continues...

Well, Daron is still in the process of adjusting to his new surroundings in Lowell, MI. From what I can tell, this is going to take him awhile. He is supposed to go to the dining room for Lunch & Dinner. But, he decides at the last minute that he wants to stay in his room to eat. That means that his meal is sent to the dining room & he has to wait longer to eat. I did talk with the dietician & she will work on coming up with something that will allow him to make these last minute decisions & still get his meal with everyone else. That will be a good thing. Please pray that Daron will be willing to eat in the dining room with everyone else. That will help him meet other people closer to his age.

Also, he feels more comfortable staying in his room most of the day. There are activities that he can be a part of if he so chooses. Please pray that he will take part in these activities. That will also help him to adjust & meet others closer to his age.

I am really worried about my beloved husband. I am afraid that he might fall into a depression if he continues to separate himself from the rest of the residents around him. I know that this transition is going to be a hard one on him. He has had a lot of things taken away from him with this move. The D.O.N (director of nursing) & social worker are willing to find a way for him to work in the laundry area....but that's up to him. I am planning on talking with both of them at our next meeting later this coming week or the start of the next week. I know that this whole thing has to be tough on Daron, but I also know that he is glad to be closer to home. Please continue to pray for him through all of this adjusting.

If you are able to visit him, please feel free. He would love to have friends & family visit him. Also, please continue to send cards of encouragement to him. Thank you all so much for your support, encouragement & prayers for Daron during this time!!! It truly means a lot to him!

March 4, 2012

The Transition Begins.....

Daron is now in Lowell, MI - a 20-30 minute drive from our home depending on which way I want to take to get there!!! We are so glad that this finally happened & that Daron is closer to home. Now comes the transition period for him. Right now it's hard to tell how Daron is handling it all because it is just the beginning. I think that it might get worse before it gets better with his transition.

The first night that he was there I got a phone call about 10:30pm to inform me that Daron tried to put himself to bed & they found him on the floor. He didn't get hurt, thankfully, but they had to inform me nonetheless. I am so glad & thankful that I will be informed about anything & everything that happens to him while he is there. That is one thing that has been lacking while he was at the VA.

Please continue to pray for Daron during this time. He is coming from a facility that allowed him to do whatever he wanted & they didn't fully care about his safety. Now he is in a facility that has his safety as the number one priority & they are limiting what he is allowed to do in order to keep him safe. Please pray that he will be able to meet new people there who are closer to his age. Please pray that he will be willing to accept all that is changing around him.

Thank you all do much for your support & encouragement during this time in our lives. God has pushed us more then we thought possible, but we know that He is in control of our lives. We trust that God will help us to get through everything that we go through & we will come out stronger because of it.

Two Years...How Is That Possible?

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