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. ...