December 29, 2013

Good-Bye 2013......Hello 2014

2013 in review......

......Taylor got a concussion while playing baseball.
......Daron moved back to the Battle Creek VA.
......I continued my employment at Kelloggsville.
......Taylor entered 4th grade at a new school.
......Taylor turned 10!
......Our beloved dog Cypress passed away unexpectedly.
......Daron & I reached 11 years of marriage.

There are other things that happened in 2013 that I am not comfortable sharing just yet. I know that a day will come when I will open up about them, but now is not the time. Please pray for the unspoken requests that God knows about.

We look forward to 2014 & its many possibilities. I am thankful that my family has made it through another year together. Please continue to pray for our family as the new year approaches.

We pray that God will bless you with a wonderful New Year!

November 7, 2013

How Honest Should A Caregiver Spouse Be?

I have had this question going through my mind this week. I do have a tendency to over think a lot of things lately & this is probably one of those times. But I have learned that when a single question pops up all the time, I need to think it through. So here is me thinking it through.

This question came to my mind this past Sunday (Nov 3) while I was at church. My church family knows that Daron has moved back to the Battle Creek VA facility & that led to lots of questions. Here are a few that I heard:

--"Did he move back because his health is declining?"
--"That's farther away. Did Daron think of that?"
--"Why did he make the choice to move back?"

Now, how am I supposed to answer those questions without sounding like a horrible wife? Should this be my response?

"No Daron's health isn't declining. Yes it is farther away, but to be honest with you, Daron only thinks about himself these days. He could care less that he is farther away from his family & friends. He chose to move back because the nursing home in Lowell wouldn't cater to his every demand or offer activities that centered around him."

Or is that way to honest? Can you see my predicament?

The above response is the honest to goodness truth & I feel that I have every right to share that with people. However, I also understand that that would be airing my dirty laundry a bit to much. But how do I remedy the predicament?

I am not the kind of person to always dip everything in sugar before sharing it with people. Granted I have gotten better as the years have gone by. Thankfully I have grown up a lot through this. So I don't always say the first thing that pops into my head (or at least I am getting better at it). When this whole situation started two years ago, I was extremely careful of what I said & what I didn't say. I trusted a very small group of very close friends with the truth. When people outside of that trusted group asked how things were going, my answer was "We are still hanging in there. Thank you for your prayers. Daron is doing ok." I figured that as long as I was vague, everything was good.

Now that we are over 2 years in, I am tired of being vague & wearing that happy go-lucky mask that goes along with it. I want people to know what has happened & why Daron is no longer in the home. I want people to know the honest to goodness truth of being my husbands caregiver. There are days that I want to stand on my soapbox & tell everyone I meet what has been going on. I want to do all of that.....but I also want to protect my family. I don't want to speak ill of my husband. I don't want to make people think he is a horrible person. I want people to remember Daron the way he was before the MS completely took over.

So I guess the big question is......How do I roll all of my "wants" into a perfect answer to all of the questions I receive? How do I honestly answer those questions without throwing my husband or my family under the bus? How do I honestly answer those questions without sounding like a bitter wife?

Honestly.....I have no clue. I will just have to let God speak through me each time someone asks me a question. I will have to constantly pray that God will speak through me on a regular basis. Until the time when my words are completely from God, I will have to guard my answers & pause before I respond to anyone.


November 1, 2013

Daron Has Moved Back To The Battle Creek VA Medical Center

On Tuesday October 29 Daron was moved back to the VA Medical Center in Battle Creek, MI. It is a longer drive for Taylor & when we go visit him (1 hour each way). We made our first trip out there today & thankfully it went well. We were there for only an hour, but we got to help settle him in a little bit more.

Please continue to pray four our family as we adjust to this "new" arrangement again.

October 26, 2013

11 Years Ago Today...

Today marks 11 years of marriage for Daron & I. It is hard to believe that it has been that long already. There have been a lot of ups & downs the last few years, but we are still together by the grace of God.  Here are a few of our wedding photos. Wow do we look young.









Daron Is Moving --- Again

As I stated in the last post, Daron requested to be moved back to the Battle Creek VA Medical Facility. Things moved a lot faster than we thought they would & he is moving back on Tuesday October 29. I have already made the change to his address here on the blog (Right side of the screen). Please continue to send cards or notes of encouragement. They do help to lift his spirits.

This move will make it a bit more challenging for Taylor & I to go see him. Since he has been in Lowell, Taylor & I could decide at the last minute to go see him since it was a 30 minute drive each way. Now that the drive is back to 1 hour each way, more planning will have to into each visit - which will most likely only happen on Saturdays. It will also be challenging for friends &; family to visit him, but with God's grace & strength we will all make it work the best that we can.

Please pray that this move will give him peace.

Please pray that God will bless him with other great roommate who will encourage him as much as Greg has.

Please pray for safety on Tuesday as they transport him from Lowell to Battle Creek.

Please pray that he will get settled quickly & there won't be any issues (last time he lost some clothes).

Please continue to pray that everything is a part of God's will for our lives &; our family. Change is never easy, but it is more difficult when you make changes outside of God's will.

Here are a few of the memories we have from when Daron was in Battle Creek before.




Now to make some new memories!

October 14, 2013

It's Been Awhile

It has been such a long time since I last posted. Life has been crazy over here at the Tilburt house. So much has happened since the last post.

Taylor got through his concussion therapy & graduated from the post-concussion clinic. The final tests that they did showed that he does not have any brain damage! I am so thankful that he made a full recovery after his concussion.

Taylor transferred to a new school & absolutely loves it. He feels like he has more freedom to be a normal boy at the new school. Plus, I am currently his lunch lady so we see each other a lot.

Daron requested to be moved back to the Battle Creek VA Medical Facility. He feels that he is not getting the proper care he needs at the facility in Lowell. The VA facility offers more activities for him to be involved in. Plus he will have a bit of freedom & still stay on the grounds.

As for me.....I have discovered that there is a lot of underlying anger towards Daron. I am not ready to get into specifics since I am still trying to work through it. But I do know that God will continue to give me the strength that I need to get through each day. Without that hope I know that I would just fully collapse under the weight of everything I am dealing with.

Thank you for your continued prayers for our family. This journey is taking a lot of twists & turns that we could not have planned for. Your prayers are helping us get around & through each of those. Thank you again!


June 27, 2013

Emotional Roller Coaster

The first time I ever went on a roller coaster was the Summer of 1998. I had just finished my Junior year of High School & I was planning a trip to Cedar Point with some friends. Before we went, I wanted to go on a local roller coaster so I wouldn't freak out once we got there. Michigan's Adventure had just opened Shivering Timbers & that was my first roller coaster. I was scared out of my mind because I didn't know what to expect!! Even though I was scared, I got on & just went with the ups, downs, twists & turns that came along with the ride.

That is how I am feeling a lot these days. I am scared out of my mind since I don't know what each day is going to bring. But, I know that God is in control of each day. So I just get on, buckle up & go with the ride. Most days I wake up in a great mood - happy to face another day that God has granted me. Sometimes that feeling lasts for half of the day. Sometimes that feeling only lasts a few hours. Then I get bummed out, angry, frustrated, exhausted with whatever is going on & I just want to climb back in bed.

Other days I wake up dreading the day & I spend most of the day in the house with all of the curtains closed. On those days, I want to ignore my phone, email, facebook, the door, etc. I don't want to talk to anyone because I don't want to hear any bad news or anything. Those days don't come very often, which I am thankful for! I don't like when those days come along, though. I have started fighting my way through those days & forcing myself to leave the house. I do that in order to teach Taylor how to handle himself when he has days like that.

My emotional roller coaster is different from those of others - thank goodness. God created each of us differently & so we each face different emotional roller coaster. Taylor laughs at this, but I tell him that I can't always be a happy-go-lucky type of person with rainbows coming out of my backside. That's not me. That's never been me. Yes I can fake it & pretend to be happy all the time, but then I am lying to myself & those around me & lying is a sin. I don't like putting on a mask just to leave the house, hang out with friends, go to church, go grocery shopping or anything else that puts me around people. Again, that makes me feel like I am lying to myself & others by doing that.

Granted, I don't want people to think that I am miserable & that I complain all the time. I'd loose all of my friends if I did that. I do, however, want to feel like I can be open, honest & transparent with people. Maybe not everyone I come into contact with, but with the people I see on a regular basis at least.


When I am going through all of the twists & turns of my emotional roller coaster, I am so thankful that God is right there with me. He is protecting me from things that could be worse then what I am having to deal with. He is keeping me in place & on the right track for my life. I know for a fact that I would not be able to deal with any of this if He was not there with me. I am sure that I would be in the deepest, darkest depths of depression with no way out.

God has always used music to help me face certain emotions, or express those emotions. Tenth Avenue North has a new song out that brings me to tears every time I hear it. It completely describes where I am & how I feel lately. It is entitled "Worn" - the video & lyrics are below.

If you are worn out from life & you don't know Christ as Savior, I urge you to find someone to talk to. You can send me a comment (no on but me sees them). You can go to a local church & talk to the Pastor. You do not have to go through this alone!! God created you & He loves you more then any person on this earth will ever be able to. He doesn't want you to go through this life & all of it's heartaches alone. He is reaching out to you right now. All you need to do is reach out, take His hand & ask Him to be your personal Savior & Lord. Please don't wait any longer. The weight from this sinful world can & will crush you without Christ there to help you. Christ came to this sinful world, took on our sinful flesh & died on a cross so that you don't have to struggle anymore. He died so that you can live a free life.

If you are a Christian & you are feeling worn out from everything, I pray that God will take that burden from you. He can handle all of the weight & you don't need to carry any of it around anymore. Let go of the burdens. While writing this post, that is what I did. I prayed & handed the entire burden to God. I know that He will carry it for me until it is gone. I just need to remember to pray every day & keep giving him that burden back. We all struggle with fully letting go. We just need to remember that it is a daily struggle for awhile & this it gets easier. Once we see that He can truly handle everything we give Him, we will not want to carry any of it every again. I pray that you will find that hope, peace & reassurance as well.


WORN
By Tenth Avenue North

Verse one:  
I'm tired I'm worn 
My heart is heavy  
From the work it takes 
to keep on breathing 
I've made mistakes I've let my hope fail  
My soul feels crushed by the weight of this world  

Pre-chorus:  
And I know that you can give me rest  
So I cry out with all that I have left 

Chorus: 
Let me see redemption win  
Let me know the struggle ends  
That you can mend a heart that's frail and torn 
I want to know a song can rise 
from ashes of a broken life  
And all that's dead inside can be reborn 
Cause i'm worn  

Verse two:  
I know I need to lift my eyes up  
But I'm to weak  
Life just won't let up  

Pre-chorus  
And I know that you can give me rest  
So I cry out with all that I have left  

Chorus:  
Oh Let me see redemption win 
Let me know the struggle ends  
That you can mend a heart that's frail and torn 
I want to know a song can rise 
from the ashes of a broken life  
And all that's dead inside can be reborn 
Cause I'm worn  

Bridge: 
My prayers are wearing thin 
Ya I'm worn  
Even before the day begins 
Ya I'm worn  
I've lost my will to fight 
I'm worn 
So heaven come and flood my eyes  

Final Chorus:  
Let me see redemption wins  
Let me know the struggle ends  
That you can mend a heart that's frail and torn 
I want to know a song can rise 
from the ashes of a broken life  
And all that's dead inside can be reborn  
Yes, all that's dead inside will be reborn  
Though I'm worn 
Ya I'm worn

June 19, 2013

Dealing With The Tough Stuff

Lately, there have been more roadblocks in this journey I am on. I know that some of the roadblocks I am encountering are put there by God to help me grow in my faith. I also know that some of the roadblocks are put there by Satan to help me stumble & loose my faith - he just forgets that trying to make me stumble can actually strengthen my faith (he's not very smart for a former archangel). The tough part is trying to figure out which roadblock is which. Most of the time I don't realize it until after I have tried to either plow through it, jump over it, go around it, roll under it or know it to the ground & smash it to pieces. It is tough to look at the roadblock head on & pray that God will help me deal with it. I am stubborn!! I want to control this ride that I am on & I want to do it my way. It's only after hitting my head, stubbing my toe, breaking my neck/leg/arm/etc (so to speak) that I realize that I need to let God drive & everything will work itself out.

I know what you are thinking .... "Duh Cathy. How long has it taken you to figure that one out?" My answer to that is ...... Obviously I haven't completely figured it out. If I had you would not be reading this post. Again, let me reiterate that I am a stubborn, strong-willed, thick headed, selfish, sinner saved by God's grace! I am so far from perfect it isn't even funny. When I think of perfect, I think of God Himself & there is no way on this God created Earth that I am going to even be able to reach that level of perfection.....ever. God created me the way that I am for a reason, I just can't figure out what that reason is.

So, I mentioned some roadblocks that I have to deal with. I am sure that you are wondering what they are. They are going to sound selfish to you, I'm sure. But you know what, this is what I am dealing with in my life. If you don't want to meet the real, honest me ..... then stop reading this post right now.

If you are still reading, then please cover this roadblocks in prayer as you read them. I don't like calling them roadblocks, but that is how I am facing them right now. I need to get through them in order to fully follow God's journey.

--Daron's MS is relapsing (s-l-o-w-l-y). With this relapse, he has more days that are just plain frustrating for me. This is gonna sound selfish & mean, but I have his number blocked on my phone. I get notifications when he leaves a voicemail & I do call him back when I am able to sit & talk to him. There is a reason to my crazy madness -- 20 minutes of being asked the same exact question can drive a person to the brink of insanity & I am not ready for the rubber room with the special jacket just yet. It is also difficult watching him go through this from a distance. I know that he calls for a reason - he misses Taylor & I. I also know that Daron would love it if Taylor & I visited him all day every single day. That's just not possible & it's not a reasonable request. Taylor needs to have a "normal" childhood & I am trying my best to give that to him. I also know that Daron wants to be involved in the day to day of our lives. Again, that is just not possible (in my mind). With his mind failing him, it is difficult to tell him things because I know he won't remember (hence the 20 minute phone conversation that revolves around the same question).

Now, before you go straight to the comment section & tell me how you feel regarding what I just wrote; please keep reading.

--My lack of self-esteem, self worth & my huge fear of confrontation. (I know that the last one doesn't really go with the first two, but trust me, in my life they all run together.) My lack of self-esteem goes back way to far for me to get into right now (maybe that will be a future post). Due to the lack of self-esteem, I lack the ability to see my own self worth. Also, due to low self-esteem, I lack the strength to fully defend myself when I am being confronted. I figure that if someone is frustrated with me to the point they feel the need to say something, then I must have done something to deserve it & I won't say anything to defend myself - unless I know that the person is way out of line or something. This is part of the reason I call Daron back on my terms. I know that the phone conversation will get uncomfortable & I don't want to face it. I also know that there will be some sort of confrontation or guilt trip & again that makes me uncomfortable.

Now, I am certain that there are people reading this who know & love Daron (family, friends, etc). In my mind (whether you feel this way or not), the people are frustrated with me over how frustrated I am with Daron & the possible lack of respect. They are probably also thinking that I am being a horribly selfish, un-godly wife for talking that way about my husband. Now, I don't know if that is true or not, but let me say this in case you are thinking that ...... This family blog is a way for me to open up my life to those who are looking for a way to see what I am going through. It is also a way for me to share with those going through a similar situation. Plus, I am able to keep family & friends who live far away up dated on our lives. I don't like feeling like I have offended someone, but at the same time I am not going to hide who I really am. Take me or leave me, this is who God made me.

--Another roadblock I am facing right now is Taylor's concussion. This is just adding a whole different set of issues all it's own. Being a single mom was hard enough. Being a single mom to a child with a concussion that effects his mood, attitude, outlook on life, emotions, etc is just plain exhausting. Each day comes with it's own set of challenges & they are never the same. Taylor can go from 0-60 in the blink of an eye with his emotions & moods (if you think leading with a hormonal female is tough, it's a piece of cake compared to this). I know Taylor can't fully control what he is going through & I feel horrible that I can't do anything to make him feel better. I know that I can pray for him - which I do on a minute to minute basis daily. I am thankful that he is starting physical therapy & speech therapy at Mary Free Bed. I am slowly beginning to see the light at the end of this tunnel, but it is still a ways off in the distance.

Due to those roadblocks, I am discovering just how tough (or weak at times) I really am. There are days I don't want to get out of bed & I experience depression type symptoms (please do not recommend I see a therapist or any medications I should take to help with this). Then there are days when I can't wait to get out of bed & see what they day has in store (those are fewer & far between, but they are there). Every morning I ask God for the strength I need to get through the next 30 minutes. Then I ask for the strength to get through the following 30 minutes. So on & so forth throughout the course of the entire day. I am so thankful to have a Heavenly Father who is willing & able to give me the strength I need. I am also thankful that He doesn't cut me off from that strength. I know that through constant prayer, fully relying on God, letting Him do the driving & not getting in the way, I will get through all of these roadblocks. I am slowly chipping away at them & I know that God has a lesson He wants me to learn. It is just tough to wait to see what that lesson might be. Besides, over the past few years I have come to learn that sometimes there is another roadblock on the other side of the one I am dealing with. Then I have to start dealing with that one before I can learn the lesson.

Thank you for letting me rant for a little bit. Sometimes it is good to just get things off your chest, throw them into the atmosphere & rest in knowing that someone is praying for you.

June 13, 2013

Getting Crafty In the Kitchen!

I have spent the last year making my house feel like my home & putting my own personal touches on it. We have lived in this house since February 2003 & it has looked the same ever since. Daron & I never talked about painting or personalizing it because we thought we would move at some point. Now that it is just Taylor & I in the house (& my best friend lives a few houses away), I wanted to make this my house. The personal touches started in August 2012 when I painted the house - you can view all of the before & after photos here.

My latest project has been completing my kitchen (slowly) & helping it look the way I have it pictured in my head. It is crazy to remember what my walls looked like when we moved in...

I never like the floral print on the plasterboard walls. It was through the entire kitchen from floor to ceiling. You can see the color of the trim, cupboards & doors in the right side of the photo. I was so happy when I got everything painted. The change was amazing....

I love how cheery my kitchen is now!! But it still didn't seem complete for some reason. So I started looking on Pinterest for some inspiration. I knew I wanted something on my one large wall. This is what I came up with & I absolutely LOVE it!!
The project on the left is just canvas covered with fabric. I used stickers & painted over them. When the stickers were removed it left this amazing artwork! The project on the right is made of individual wooden letters. Some are covered with music note fabric & the rest are painted. They really make that wall look better!

Another project I did was on the kitchen window. It is above my sink & faces the sunrise each morning. I have always loved how much sunlight came through that window all day long. Now I love the light coming through the different colors.

My abstract sunflower was made using glass pebbles, epoxy & grout. I adhered the pebbles directly to the window with the epoxy. Once it was all dry, I covered it with grout to fill in the lines. Every morning I smile when I see my kitchen filled with different colors of light from the sun.

I have 2 more projects to complete in my kitchen - a new sink & a new globe for the light above the sink. Once those are done, I will move on to some projects in the dining room/living room. I am so thankful that the Lord gave me a creative mind. It is so much fun seeing how my mood & environment change with just some crafty creativity & elbow grease.

May 27, 2013

Baseball, Concussion, Craziness......Must Be Spring

Taylor started a new adventure this year. He decided he wanted to try his hand at playing little league baseball. So, I got him registered & bought the equipment he needed. We made it to all of the practices & he was having fun. Then, during the last practice before the first game, it happened. He got hit in the forehead with a baseball while covering 2nd base & got a concussion. Other then headaches, dizziness, balance issues & mood issues you can tell.

Here's where the craziness comes in....He is not able to play until the doctor releases him to do so. He isn't able to go to school until June 3 (the last week of school) if he is doing better. He isn't supposed to play video games, play on the computer, read, or do anything else that will work his brain or jostle his brain. He is supposed to stay still, calm & relaxed. For those of you who know my son (or any normal 9 year old boy) know that is a difficult task for him to do. But, I know that at some point he will figure out that the doctor knows what is best for him & he will actually listen to the doctor. Until then he will have to deal with the pain that goes along with his choices.

Please pray that Taylor will heal quickly & not have any lasting side effects from this concussion.

Please pray that God will give me the strength & patience I need to help Taylor get through this time.

April 15, 2013

Some Changes

The first change is one that I am excited about. I have now made it easier to find my blog. All you have to type into the browser is www.tilburtfamilyadventures.com. It's a small change, but it is one that I have been debating on for quite awhile. If you already have this blog bookmarked, don't worry, you will still be able to get to it under the old address.

Another change affects our family calendar......Taylor started baseball! Right now he has practice twice a week (he can only make it to one practice due to AWANA). Starting May 18 he will have games twice a week - thankfully AWANA will be done on May 1. He had fun at practice tonight, in the rain. I am so glad I finally found a sport that he will hopefully continue next season.

So far, those are the only changes that we are facing here in the Tilburt household. I know that more changes will come along on our journey, but I will take them as they come.

April 8, 2013

Another Bend In The Road

I was so happy when Daron was clear minded after making his difficult decision. Life seemed easier during that time....
....he remembered all of our conversations - that meant less frustration all around.
....he was happier - that led to great visits & phone calls.
....he was nicer - again that meant great visits & phone calls.
....he was the Daron that I fell in love with once again, the guy that I have missed all these years & that I knew was truly buried deep inside.

Now it seems that we have taken yet another bend in the road during this journey. His mind is getting foggy once again. He has become selfish in his thinking again (I know that is part of the dementia). This is the tough part in this journey - the foggy brain. I am always reminding myself not to get frustrated with Daron when I talk to or see him. Since we have only been married for 10 years, it is tough to always remember that fact. I miss our deep discussions on things that were happening in our lives. A normal conversation for us these days lasts about 5-10 minutes & most of that is listening to him talk to his roommate or laugh at the TV.

I know that this bend won't last forever & we will take another bend in the road soon. I just don't know what that bend will be. I am thankful, though, that I know & trust the One who does know where that bend will lead & when we will take it. There is a Casting Crowns song that is always running through my mind these days. It is a wonderful reminder that God is already at the end of our lives & He is not surprised by what happens in our lives. The song is called 'Already There'. If you are going through a tough time, I encourage you to watch the video below & focus on the lyrics. They are completely true!


March 18, 2013

How Are We Doing?

That has been the question of the last few weeks & it has come in a few different forms......
....How is Daron doing?
....How is Taylor doing?
....How are you doing, Cathy?

So to answer all of those questions, I thought I would do it this way.

Daron....
....He is doing well right now. We won't know much for a few weeks as the medicine has to fully leave his system. Once that has happened we will have a better picture. He is still clear minded - which is amazing. He says that he feels great & is enjoying each day. Please keep praying for him as the medicine leaves his system & we see what the Lord has in store.

Taylor....
....He is getting through each day the way any normal 9 year old does - with lots of activity. He is doing well in school - thankfully. Then as soon as we get home, he is moving almost non-stop until it is time for bed. But I am thankful for his activity & I know he can't wait for the weather to turn nice again; then he can play outside. He doesn't talk much about what is going on with Daron, but that's normal for him. Please pray for Taylor as he gets through school each day. Also please pray for him as he goes through this time.

Me....
....I am getting through each day by the grace of God & with His strength. Work is keeping me busy for a few hours each day which is a good thing. Knowing that Daron is so clear minded these days is a comfort to me. I ask that you pray for physical strength for me. My body does not like stress at all & when I get stressed out I get sick. I have been fighting an ear infection/sinus junk for almost 2 weeks & it is getting annoying. I have a lot to get through each day between work, housework & caring for Taylor that I don't always take time to care for myself.

So that is how we are doing these days. Each day will be a journey in itself & I know that God will get us through each day. Thank you all for your caring & your prayers. We are very grateful to each of you!

March 12, 2013

Life As A Single Working Mom Is......

.....Interesting. Since the start of December, I have been working at a different school. I've also been working longer hours. The longer hours made it difficult to get Taylor to school in the morning. The last few weeks I have had to bring him to work with me at 7:15am & then take my 30 minute break after getting breakfast ready for child care at 7:45am. I was always able to get my entire job done, it just made for an interesting morning.

......Stressful. Trying to make sure that everything was taken care of between work & bedtime was insanely stressful. I'd get out of work at 1:15pm, stop at home to change clothes, try to do some cleaning, let the dogs outside, pick Taylor up, come back home, try to clean some more, make dinner, eat, take care of Taylor, make sure he got his homework done, get him settled down, let the dogs out again, get Taylor in bed, clean up from dinner, do laundry, try & relax a little bit, then finally climb into bed around 11pm or so - 6 hours before my alarm was due to go off. The next day I would do it all over again. Whew.....I'm exhausted just typing all of that.

......Encouraging. These last few months have been an encouragement to me. I love the job that I have & I am very grateful for it. But God knew that I needed to be in an environment where I could work & think at the same time. A place where I could spend my entire day praying over kids, teachers & staff. A place where I could sing with the Christian radio station & not feel like I was annoying someone. A place where I could offer comfort to the kids, teachers & staff during a difficult time when they lost one of their young students suddenly. But the school has been an encouragement to me as well. The day that Daron made his tough decision, I was able to talk to one a few of the staff members & share my journey with them. I was able to share how God was using this journey to help others. God knew that when that tough day came, I would be in a place that would allow me the time I needed to process through it without feeling like I was in someones way.

......Full of Changes. I started working at Kelloggsville High School November 5th & was moved to another school on December 6th. On Monday March 18th I will move back to Kelloggsville High School & resume my dish washing job. The next few days at this school will be bittersweet. I have grown to care for & respect the teachers & staff. I have also grown to care for the kids there as if they are my own. I have learned so many names & have gotten to know some of them better then others. I have enjoyed walking through the halls & seeing their smiling faces. On Monday I will see 600 high school students as they are rushing through the lunch line so they have time to socialize with friends. It will take a long time to learn anything about any of them (if at all). I won't have that connection to the students. But I know that God has me going back to Kelloggsville High School for a reason & I trust Him with everything.

......Rewarding. The time I have with my son after work has been more rewarding then it was when I wasn't working. When I go back to my original hours, Taylor & I will get to spend time together in the morning again. Granted, Taylor loved coming to work with me in the morning. He even made a comment that he wanted to be a lunch person like me when he grows up. I am seeing more & more that my time with Taylor is precious & I need to make the most out of the time I have with him. One of these days he won't want to be around his crazy Mom anymore, but I am hoping that he will look back on these time with good memories.

......Worth It All!! I would never trade any of the craziness, stressed out days, sleepless nights, frantic mornings, tired afternoons for anything in this world. I know it's crazy, but this is the best time of my life right now. I have a crazy life with a lot of stressful stuff going on right now, but God put me on this journey for a reason & I will trust Him. There will come a day when I won't be this stressed out & I will probably miss all this craziness (at least I would like to think that I will), so for now I think I will just (try to) enjoy the ride.

Daron's Decision

In June 2009, Daron started a new medication. This medication was given to him every 4 weeks via infusion at the VA in Ann Arbor, MI. We knew going in that there was a big side effect that hits 1 in 250 people. We knew that we would not be able to test for this side effect until him had been on the medication for 2 years. So in January 2012 the doctor finally did blood work to test for this side effect. The results led to a tough decision from Daron & I. First, let me tell you about the side effect.

The side effect is called Progressive multifocal leukoencephalopathy (PML). It is "a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin--the material that insulates nerve cells (neurons)". The Polyomavirus JC virus that causes PML is carried by a majority of people who do fine with it &; are never affected by it as long as they have a good immune system. Right now there are no medications on the market to fight this disease. There is a drug being studied, but it is not on the market. There is a possibility that a plasmapheresis (like dialysis but with the blood) might help clean the antibodies out of his blood, but there is no guarantee & it's a long procedure. The down side is that this disease has a 30-50% fatality rate in the first few months following diagnosis & those who survive PML can be left with severe neurological disabilities. (Information found here)

I know that is a lot to take in for those who know & love Daron. Here is where his decision comes in to play.  Daron's doctor told him that it is strongly recommended that he end the infusion & start a new medication that has been on the market for awhile. The new medication is a once a day injection that may or may not continue to keep his MS stable. So Daron & I talked about all of the options. More importantly we prayed about everything. On Friday March 1st, Daron made his decision to stop all MS treatments. He knows that this decision will be tough for some people to understand, but we are taking a step of faith. He wants to follow the plan that the Great Physician has for him & live out the rest of his life comfortably. All of the trips to Ann Arbor every 4 weeks are physically draining on him & it takes a day or two for him to get back into his normal routine again. On top of that, his body, min & spirit are getting tired.  He has been fighting for a long time & he is ready to rest. This is not him giving up at all! This is Daron resting completely in the arms of His Savior & trusting the perfect will of God 100%.

There are some things to keep in mind with this decision. This decision does not mean that Daron will pass away anytime soon. He could have another 30 years on this earth, but we don't know. This decision does not mean that Daron just signed his own death certificate. He's not giving up, rolling over & waiting to die. He is taken control of his health & making the best decision for him. This decision means that Daron no longer wants to take MS medications in order to keep the MS under control. Each medication has it's own side effects & no medication has a guarantee that it will control the MS. We do know that Daron will have another MS relapse in the next few months & that he will become more disabled during this time. Daron knows that will happen, but he knows that God is in complete control of the MS - not the other way around. We also know that Daron has had a very clear mind during this entire process. That is a miracle in itself & I am grateful for that!!

One thing we don't know is where Daron is at in the process of developing PML. There are many different scenarios that could be in affect right now, but I don't want to assume or speculate on something that I don't know much about. There are a few things that Daron could request in order to try & see where he is in developing PML, but they are invasive & nothing that he wants to go through. 

Please continue to pray for Daron during this time. We know that God Himself is in complete control over this entire situation & we trust Him in all things. I just ask that you continue to pray for emotional & spiritual strength for Daron during this time. 

Please pray for Taylor & I as we support Daron 100% through this time. When Daron told me what his decision was, I knew that he needed me to advocate for him a lot more. As his health declines, my caregiver role will become more prominent. Please pray that I will continue to have the strength that I need to handle everything. 

We are so eternally grateful for all of our friends & family members who are behind us each step of the way. I know that this entire journey would be more difficult if we were going through this alone. Thank the Lord that we are not alone in this!! Each one of you mean so much to us & I know that I will never be able to properly thank you for the numerous ways that you have encouraged us. I pray that God will bless each of you & your families beyond your comprehension for all for the blessing that you have been to our family. Please continue to send encouraging cards & notes to Daron (his address is on the right hand side of the page). He keeps each of them & is always reminded that he is loved by so many people.  

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. ...