December 24, 2015
I pray that each of you have a blessed Christmas & a Happy New Year. May 2016 be a wonderful year for all of you & may God bless you beyond your wildest dreams.
December 20, 2015
Even though the P.A has said that she is estimating a 6 month timeframe, the VA requires that he be certified by his doctor in order to be placed under Hospice Care. There are 5 qualifications that Daron has to meet in order to be certified for Hospice & Daron only qualifies for 2 of them at this point. With him being seen on a weekly basis now, the P.A will be able to recommend to the doctor that he be certifed as soon as he fully qualifies.
I am glad that I have more answers & that Daron will be getting more care now that he is under Palliative Care. So that is a blessing in itself. Another blessing came from an anonymous person at my church in the form of a gift card at the exact moment I needed it.
Another blessing came from the teaching staff at the school I work at. I have been blessed to have such wonderful coworkers. I informed them as to what is going on in my life ; they have all been so supportive. I really enjoy going to work everyday because it helps to keep my mind off eveything. Then they blessed me with an unexpected gift card. I love my job & the staff I work with!!
**Please continue to pray for for strength for all of us as we continue on this journey.
**Please pray for safe travels as we go visit Daron as much as we can.
**Please pray that Taylor & I will stay in good health so we can visit Daron.
Thank you all again so much for all of your prayers & support as we go through this. We are truly humbled & blessed to have such wonderful friends & family encouraging us through this journey!
December 8, 2015
It's crazy how far away 6 months ago feels to me. The school year had just ended & summer vacation was starting. I was getting ready to help serve in the kitchen at Lincoln Lake Camp for a week. Taylor was getting ready to go to camp. I was finishing up some VBS prep work. It feels like it's been a year since all of that happened.
A lot can change in 6 months.
December 2, 2015
My in-laws & I went to a care conference for Daron to discuss how much things have changed for him in the last few months. We went over his dietary changes (nectar thick liquid diet & spoon fed by a staff member), his wheelchair changes (no longer able to get around on his own in an electric wheelchair), vision changes (waiting to be referred to a low vision clinic to see the extent of vision loss), etc. We also discussed his new diagnosis & what it means.
His new diagnosis is Malignant MS - a very rare, very aggressive form of MS. It's so rare that the staff in Battle Creek aren't fully sure what Daron is going to experience as time passes. We are all at square one with this. I don't know if that's a good thing or a bad thing at this point.
This form of MS also means that he will progress at a rate we aren't sure of. I asked the doctor if they know how long he might have (not wanting them to play God, but give a best estimate)......the doctors response was 6 months - more or less. The doctor said it was less likely he would still be here in a year, but again they don't understand this form of MS. That was tough to hear & honestly, I still haven't fully processed all of the ramifications.
Could he live beyond 6 months? If that is God's plan for him.
Could he pass away in less then 6 months? If that is God's plan for him.
God is in total control of this situation & only His plan will play out. Only God knows how this will all end & when. At this point I am no longer asking for Christmas. I am asking God to let His plan play out in Daron's life & that He not let Daron suffer. I felt that asking to make it past a specific date was like putting God in a box. If God's plan is for Daron to pass before Christmas, I don't want to feel like God let me down. When Daron passes, I want to know that was the date/time that God saw as his time to enter Heaven before Daron was even born. I want to know that God's plan for Daron's life reached the perfect outcome & was complete.
For myself, Taylor, my extended family & Daron's extended family....this might be our last Christmas with him here on earth. But we know that we will have an eternity of Christmases with him in Heaven. Does that thought make any of this knowledge any easier? To be completely honest.....not all the time. It's tough to know that your loved ones life will end sooner then you think it should. It is easier to think of the eternal side because we know he won't be in pain anymore. We know that he will be happy & at peace. We also know that it won't seem like a lot of time has passed to him when we join him in Heaven. That is the truth that we hold onto during this time. That is what gives us the strength to keep going every day. God is the only place we can find true peace & comfort through this difficult time in our lives.
How can you help us through this?
---Pray for strength......emotional, spiritual, physical & mental. The coming days/weeks/months will be difficult & we covet your prayers through it.
---Pray for decisions that will have to be made. I have a meeting to discuss end of life decisions tomorrow (12/9/15).
Thank you to all who have been beside us along this journey. I am truly grateful & blessed to be surrounded by so many wonderful friends & family members, especially now. May God bless each one of you as you have blessed us!
November 16, 2015
November 14, 2015
On November 13th, Taylor & I went to visit Daron. I tried my best over the days leading up to the visit to prepare Taylor for what his dad would look & act like.....but I knew I couldn't fully prepare him. When we got there Taylor gave his dad a hug, talked to him about school & then asked me if we could leave. We only stayed for about 15 minutes, but that was 10 minutes longer then Taylor wanted to stay. I could tell that he was frustrated with me about that, but I didn't pay attention to his behavior & I should have. Taylor completely shut down. He stared out the window, paced the room & then went into the hall for a few seconds. When I finally saw how he was acting, I knew we had to leave quickly. We said our goodbyes to Daron & I grabbed a tissue for Taylor as we walked out of the room. He was able to hold in the tears until we reached to bottom of the steps outside & then he melted into tears. I held on to him as tight as I could & asked him what the hardest part was. His response broke my heart -- "It's tough seeing my dad like that."
It was tough for Taylor to see his Dad not be able to focus on his face or look at his face while he talked to him. It was tough for Taylor to see his Dad struggle with getting his blanket off of his hand. It was tough for Taylor to see his Dad not be able to tell him how many fingers he was holding up (he had both hands up & Daron could barely make out one hand). It was tough for Taylor to hear his Dad's speech slur, drop off, mumble. It was tough for Taylor to see his Dad "notice" that we had arrived 5 minutes after we had already been there & been talking to him. It was tough for Taylor to hear his Dad talk about going back to MI for a few days & that he was still in IL.
I thought it was tough on me.....but this path is going to be tough on Taylor & I have to be strong for him. I am saddened that my son has to go through this journey. I would never trade any part of this journey for my son at any time for anything.....but I want to protect him from the tough realities of this disease & I can't. That is the worst feeling in the world for a parent -- wanting to protect your child from something & realizing that we can't. I thought I had prepared him well enough for this, but I realize that there isn't a way to prepare him for the path ahead. He knows that God has a plan for all of this & that when his Dad passes away he won't be miserable. He knows that, but it is still hard for him to see it happening. He knows that death is a part of life -- but it's still hard to face when it is your own Dad whose dying. He knows that he will see him again in Heaven -- but it is hard to keep that in view here on earth.
As for now, my sole focus in being there for my son through this. If that means that I hold all of my sadness & tears in until he has gone to bed, then so be it. If that means dropping everything I'm doing to play a game with him, snuggle with him, talk to him, listen to him talk.....then so be it. I get my strength from my Heavenly Father & now I need to teach my son to do the same. I also need to be my son's rock during this time. If I feel I am having a tough time with this, I need to keep in mind that my son is having an even tougher time with it.
- Please pray for mental, emotional, physical & spiritual strength during this time in our lives.
- These next few days/weeks/months are going to be difficult with the holidays approaching. We are going to need the kind of strength that only God can provide.
- Please pray for God's Almighty Will to be done in this.
- My prayer is that Daron will be with us through Christmas, but I don't want to put God in a box. I want God's Will & Plan for Daron's life to be my sole focus & prayer.
- Please pray for God to grant Daron peace during this time.
- Daron doesn't fully comprehend what is happening to him & that is a wonderful thing. My prayer is that he continues to be unaware as this progresses.
- Please pray for God's protection over our entire family through this.
- We all know that Satan will try to use this time to put wrong thoughts into our heads & hearts. I ask that you join us as we pray for a legion of angels around each of us through this time.
- Please pray for God's grace, peace & comfort during this time.
- There are going to be some tough days & only God's grace, peace & comfort will be able to help us get through those days.
- Please pray that no matter what, our entire family will allow God to hold us during this time.
- My prayer is that I stop holding onto what life should be like & I allow God to hold me through this. I need to remember that God is on the throne & that he knows how this will all turn out.
July 22, 2015
Here are a few tings that I have learned over the past 4 years:
--We get asked all the time how Daron is doing & how often we go out to see him. To answer those questions -- Daron is doing ok. He has his good days & his bad days. I have noticed that his mental faculties are diminishing each time I talk to him. He is repeating himself a lot more during our phone calls or that our phone calls are very one-sided. That means that he will get caught up on something that he finds super important & will only talk about that one thing the entire phone call.
-- Taylor & I don't get out to see him very often due to our busy schedules (I'm working over the summer & Taylor is in a summer school type program). We also want to make sure that we are in the right frame of mind/heart/attitude before we go see Daron. It is very draining for us when we go see him - emotionally, mentally & physically. If we aren't in the right frame of mind/heart/attitude, things can be said that shouldn't be or we just flat out dread going. It's tough to explain, but for Taylor & I, we want to make sure that we are doing everything on our end to make it a good visit. We can't control how Daron is feeling, if he's having a good or bad day, or what comes out of his mouth; but we can control all of those for ourselves.
--While I appreciate completely that people care about Daron, I feel as though Taylor & I are pushed to the back. A lot of the times the person will ask how Daron is & then say something like "That's good. Just want you to know that I am praying for Daron everyday. I'm praying for you & Taylor too. Have a good day." While it is always awesome to know that people are praying for us, please take the time to ask how we are doing. It really only takes an extra 5 seconds to ask & I can answer you in less then a minute. Honestly, I have even learned to figure out if someone genuinely cares & wants the full answer or if they just want the "We're doing good" type of answer. I would much rather give you the "We're doing good answer" then not have you ask at all.
--Raising a pre-teen boy alone is not for the weak. Taylor is having a tough time with things & his hormones are definitely taking over his brain. There are days when he is more emotional then I am - & I'm a very emotional woman. Taylor has also matured a lot over the last 4 years. He has grown up into a very caring young man & I am so grateful to be able to call him my son. I love being his mom - even when he is overly dramatic about something simple.
--Taking time to focus on me is not a form of being selfish. I have truly learned that importance of enjoying every moment I can take for myself - even if that means adding 5 minutes to my shower, going to the grocery store alone or going outside to water the plants alone. I don't get a lot of alone time & I know that moms in two parent homes have that same issue. But, in my opinion, everyone needs to find some way to take some time for themselves - outside of their daily devotion time. Spending time alone to relax & decompress is essential for our mental, emotional & spiritual well-being.
--God's Plan is so much greater then our plans. Taylor & I know that this is all for God's glory, but it's hard to remember that when you are going through the day to day grind. It is hard to look at things around me & remind myself that God has a bigger plan for my life. It's hard to remind myself that God works all things together for my good when Taylor is having a meltdown over a video game or a toy. It's hard to remember that God has a plan for me when my husband is telling me he wants to end our marriage. Everyday something comes into my life that makes it difficult for me to see God in my day to day, but I know He's there & I know that he won't bring harm into my life. God did not cause my husbands MS to progress so quickly that he couldn't stay at home. God didn't promise that my life would be full of rainbows & happy days, but He does promise to always be there with me each step of the rocky path. It is up to me to reach out & take His hand & let Him guide me when the way gets to tough. It is up to me to let Him carry me when I don't have the strength to go any further.
Thank you to everyone who has been loving us, praying for us & being there for us through these last 4 years. Please continue to do so because you mean so much to us & there is no way we could get through without each of you. We are truly blessed to have so many loving friends, family members & church family members who care about us. We love each of you!
June 18, 2015
I know that the summer will be full, but I am looking forward to a full summer. I hope you have a full summer as well!
March 9, 2015
I'm curious about something......does Daron really need to know everything that happens at home & in our daily lives? Does he need to be that involved in things that he can't do anything about? Does Daron need to know when we are home sick, having a rough day, frustrated with something or any other "little" thing in life? Does he really need to know things that will cause him to demand to come home more often then he does now? Does he need to know considering he has partial dementia & can't keep things in perspective?
My personal opinion is that he doesn't need to know all of that. He doesn't need to know that his son didn't build a car for the grand prix race at church - he doesn't even need to know that there was a race or when it was for that matter. He doesn't need to know my work schedule. He doesn't need to know every single person I talk to on a daily basis. He doesn't need to know when his son is home sick from school or who took care of him while I worked. He doesn't need to know what bills are due, when & the cost of each one. He don't need to know that daily ins & outs of life. He doesn't need to know because it just makes things more miserable for him & for Taylor & I. He doesn't need to know.
When he is told something he holds on to it for a long time & uses it as as leverage tool to be "allowed" to come home. He uses it against me as a way to guilt me into something. Basically it becomes an old record that's put on repeat evey 2 minutes for a month straight. I know that sounds rude, but it is what it is. I know I sound like a whiny brat, but this is what my life has come to.
For 3 almost 4 years now it's been Taylor & I by ourselves doing the day in & day out of life. It's been me taking care of him, the house, the pets, the car, the bills, myself. In all meaning of the phrase, I am a single mom. The only difference between myself & a true single mom is that I am married. I know there are other families out there who have are parent out of the house - military families for example. I just don't know if there are any other families around my age who have a spouse in a nursing home.
Look, I'm sure I've offended some of you who are reading this. I'm sure you have a few things to say to me about this & how I'm acting. Feel free to leave those thoughts in the comments section. Just please keep in mind that these are the thoughts & feelings of a wife & mom whose being doing this alone for almost 4 years. The thoughts & feelings of someone who has no clue what she's doing through this. The thoughts & feelings of someone who is begging God on a daily basis to give her some guidance so she can make it through each minute/hour/day/week/month/year of this life. The thoughts & feelings of a person who spends each night crying herself to sleep because this is not where she thought her life would go when she got married. The thoughts & feelings of a mom whose worried about whether or not she's doing the right things for her son everyday. The thoughts & feelings of a wife whose worried about whether or not she's doing the right things for her husband. The thoughts & feelings of a woman at the end of her rope. The thoughts & feelings of a woman who just wants the world to know that she is struggling with the life she is in, but knows that God has put her in it for a purpose & a reason.
That's the whole point of this blog, to share my story with the hopes that it might be able to help someone whose struggling with the same thing. I don't write this to make people feel sorry for me. I don't write this for sympathy. I write this because I feel led by God to put my life story out there. There are so many people struggling with life & it's just nice to know that there are others in the same boat. It's also nice to know that God has total control over this situation. So even if I have to listen to the same conversation every time Daron calls, at least I'm able to talk to him & he still knows who I am.
While I don't think Daron needs to know the little things in life that he can't control; I do think he needs to know how much he's loved & cared for. It's because I love & care for him so much I don't want him worrying about the little things that are out of his control.
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