MS is horrid disease. The physical symptoms are troublesome at minimum. The emotional is extreme. I receive a great deal of comfort and support from my dear wife, but sometimes all the support in the world can't overcome the humiliation of some of the symptoms. I don't know how to express the experience, emotion, and shame that happens due to the symptoms that manifest. I know that there is nothing I can do to prevent the symptoms and there is nothing that I've done to cause them, but humiliation still arrives. That is an emotional downer for everyone I have a close relationship with, i.e. my family.
How do I get through this emotional nightmare without placing blame on myself? I can intelectualize the truth, but the connection of 18" to my heart is quite difficult. I hear no condemnation nor ridicule from the ones I love, even in the midst of their work to correct the results of the manifestation of MS symptoms, but I sit here condemning myself. Love and service is hard to receive when it is the result of the disease that I have taken ownership of. Thus they are not shown love and thanks in return that they should. I'm too busy blaming myself, and feeling humiliation.
I need to listen to the Truth rather than the liar. Sadly the liar has my attention quite often. This is a battle of the spirit that needs to be fought, and fought, and fought again until the battle is complete. Often though I don't think I fight, I surrender and wrap the lie of condemnation and worthlessness around me.
Lies, lies, everywhere lies. MS sucks.
Saturday, February 28, 2015
Thursday, February 26, 2015
Lessons from the Snow
A rarity in Alabama...snow!! Not just a dusting of snow! More like 8 inches of snow. And guess what...my Facebook feed, my Instagram feed, and my Twitter has snow picture explosion. Don't get me wrong, I've posted some of them myself!!
I've aided in the explosion. However, as I've done something as fun and sweet as to look at everyone's pictures, it has simply stirred my heart! Actually, the more I've looked at them the more frustrated and down right mad I've become! What should be fun is not so fun!
Cute little couple pictures in the beautiful snow background. Nope...not happening either. And it has just plain made me mad!!
I've aided in the explosion. However, as I've done something as fun and sweet as to look at everyone's pictures, it has simply stirred my heart! Actually, the more I've looked at them the more frustrated and down right mad I've become! What should be fun is not so fun!
I want to play in the snow but I want to do it as a family! Yet...one more thing...that is impossible for Zine. And to be honest, it is making me mad!
Pictures of families playing in the streets. Why, if we did manage to get Zine outside in his wheelchair, we would never get him back up the driveway so he'd be awfully cold outside tonight! That would be a video for Americas Funniest Videos as Conner and I worked toward the impossible.
Pictures of kids and their daddies building snowmen. Another experience that Krisann will never know. Heart broken for her tonight despite the fact she has truly been a wild grumpy girl today. A family picture gathered around a snowman! Nope...not happening.
Cute little couple pictures in the beautiful snow background. Nope...not happening either. And it has just plain made me mad!!
Tonight, I hate MS! I hate the many things it has stolen from our family. I hate the many experiences it has taken away from Zine! I hate MS! However, in the middle of my temper tantrum, God has given me some beautiful lessons that I have to be thankful for!
1. Doing the hard things count! It counts that despite the fact I'm mad about Zine having MS and him not being able to build snowmen with our family...I did the hard thing...I went outside with our children and built a snowman while Zine sat in the house alone! Heart broken...Yes. Hard thing...Yes. But I'm so grateful that God has always given me the stamina and the energy to do the hard thing! The hard things often make lasting differences in the lives of my children!
2. God always sends the right people at the right time. Our driveway doesn't get a lot of sun. So therefore the snow can be melted everywhere but my driveway. Our driveway is also a pretty significant incline. So if there's the least little bit of snow on it...you might get down, but you won't get up! So...this afternoon Conner and I head out to try to get a good bit of the snow off! And he and I had scooped about two shovels when our neighbor, who just happened to be outside, came right over! What would have taken Conner and I a solid hour, he did in like 5 minutes! And what I loved even more...he didn't ask if I wanted him to! He just did it...an even sweeter gift for me!
3. The right tools for a job are important. Conner and I don't have a snow shovel. So we were going at it with a regular shovel. Although it was getting the job done...it wasn't getting the job done quickly! I am thankful that my neighbor had a snow shovel and obviously he knew how to use it!! Thankful for the right tools not only for snow covered driveways, but also God will equip me with everything I need for the situation I find myself in. I'm getting me a snow shovel though! I'm not going to forget! Amazon is about to deliver one right to my door!!
4. God can bring beauty in the middle of winter! The grass is brown, there are no leaves on the trees. Its been a pretty dry and barren yard! But when God showered it with snow, it became the most beautiful piece of artwork! God can do the same thing in my life. In the barren places, He can breathe new life! So thankful!!
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1. Doing the hard things count! It counts that despite the fact I'm mad about Zine having MS and him not being able to build snowmen with our family...I did the hard thing...I went outside with our children and built a snowman while Zine sat in the house alone! Heart broken...Yes. Hard thing...Yes. But I'm so grateful that God has always given me the stamina and the energy to do the hard thing! The hard things often make lasting differences in the lives of my children!
2. God always sends the right people at the right time. Our driveway doesn't get a lot of sun. So therefore the snow can be melted everywhere but my driveway. Our driveway is also a pretty significant incline. So if there's the least little bit of snow on it...you might get down, but you won't get up! So...this afternoon Conner and I head out to try to get a good bit of the snow off! And he and I had scooped about two shovels when our neighbor, who just happened to be outside, came right over! What would have taken Conner and I a solid hour, he did in like 5 minutes! And what I loved even more...he didn't ask if I wanted him to! He just did it...an even sweeter gift for me!
3. The right tools for a job are important. Conner and I don't have a snow shovel. So we were going at it with a regular shovel. Although it was getting the job done...it wasn't getting the job done quickly! I am thankful that my neighbor had a snow shovel and obviously he knew how to use it!! Thankful for the right tools not only for snow covered driveways, but also God will equip me with everything I need for the situation I find myself in. I'm getting me a snow shovel though! I'm not going to forget! Amazon is about to deliver one right to my door!!
4. God can bring beauty in the middle of winter! The grass is brown, there are no leaves on the trees. Its been a pretty dry and barren yard! But when God showered it with snow, it became the most beautiful piece of artwork! God can do the same thing in my life. In the barren places, He can breathe new life! So thankful!!
Monday, February 23, 2015
The Short Bus
Several years ago, Zine and I came up with this phrase, we ride the short bus. Was not meant in a condemning way at all! But when we had worked and worked in counseling to apply principles but failed, we said we rode the short bus. For those of you have children with handicaps, you understand this thought process. Those special children rarely ride on a large bus. They typically have a "special" bus that they ride on! Or at least they did years ago when we did the special education department with our daughter. It is a shorter bus that is accessible for wheelchairs and other special needs. It definitely carries fewer children as well. So when you ride the short bus, children can get the mentality that they are not as smart as others, or they are slower than other children. So for us, when we said we rode the short bus it literally meant....we were a bit slow on the learning curve! Unfortunately, the phrase has stuck! And unfortunately, we often are slow to learn whatever it is we find ourselves in the midst of.
A few months before our lives fell apart in November, I had become very unsettled in how I was handling things. I found myself very angry at everyone in my house most days. I found myself struggling in my faith. If I were a good Christian, then I would go through these circumstances with much confidence and much grace. I wouldn't struggle because everything was allowed in our lives by God and He was going to use those things for our good...so evidently I must have little faith. I struggled with my emotions. The emotions were running everywhere. I was struggling with my own health. I had just recovered from a female laprascopic surgery that wasn't nearly as easy to recover from as I was told. I was struggling with routine. Homeschool needed to start back, it was time for me to go back to work as well...and it was a huge struggle.
During that time, our pastor began a series and it felt like every week he preached on healing! I, in sort of a fun way, told him I was ready for him to find a new topic. To which I got this response in an email, "I would like to meet with you and Zine on Wednesday or Thursday at 4:00 pm. Please let me know if either of these dates will work in your schedule." BUSTED! Called to the principle's office! That's at least how I felt. After about 30 minutes of being in his office and trying to find a voice to speak, my heart began to spill. Why was my faith so weak? Why was I a disaster? That day our pastor had words for us but today I have no clue what those words are. These same conversations have continued for months now! We have had numerous opportunities for these conversations. I think he has said the same thing a gazillion different times in just a different way. I, on the other hand, have said the same thing in the exact same fashion over and over again. Why oh why do I feel so weak? Why oh why is my faith so shallow? Why oh why can I not just go through this life content? I definitely ride the short bus! I would hear the words and they would just not sink in!
But maybe...there's hope for those of us who ride the short bus. I'm beginning to grasp some truth of the situation. Yesterday our pastor was preaching out of Mark at the ending of the Parable of the Soils. The Kingdom of God is about transformation was what he centered his message on. The seed transformation initially takes place underground where there are no visible signs of transformation. But deep down transformation is happening. Then he went on to discuss the soil needed fertilizer. In my life, fertilizer is simply pressing into God. Waiting on God is the most difficult and most important thing I can do. Transformation will not happen without me pressing into God. And then he went on and said that the fruit is simple obedience. And simple obedience to Him gives life to others. What I took from his sermon...God sees where I am, my job is to press into Him, and transformation will come! Ahh, life is about transformation! And for the first time, I felt the struggle going on in my heart release a little yesterday. God sees where I am and my job is to press into Him and transformation will come. God sees where I am and my job is to press into Him and transformation will come. God sees where I am and my job is to press into Him and transformation will come!
Yes, I wrote that three times! Yes, I have said that to myself a hundred or more times today. And I said it at least one hundred times yesterday! The short bus I do ride, but sometimes I get a little understanding. I think I have finally grasped...I am doing exactly what I am supposed to be doing. What I am viewing as lack of faith and weakness are exactly what could be defined as pressing in to God and waiting on transformation. If I walked through these difficult days without a struggle, my faith would not grow. If I walked through this life, not feeling emotions, I could never grow in my understanding of how much God loves me. If I walked through this life without ever asking questions such as why, then I would never have the opportunity to know God more deeply. If I walked through this life content, then I would never know the peace that passes all understanding!
I'm waiting on the transformation! I wish I knew why I had to wait so long!! Some days I'm tired of waiting! But my job is to remember, God sees where I am and my job is to press into Him and transformation will come! I am to be still and know that He is God! His plan is to prosper me and not to harm me but to give me a hope and a future. My prayer is that I could continue to carry this little bit of truth in my heart and remember to be still and know that He is God! He sees where I am and my job is to press into Him and transformation will come! Waiting on transformation...
A few months before our lives fell apart in November, I had become very unsettled in how I was handling things. I found myself very angry at everyone in my house most days. I found myself struggling in my faith. If I were a good Christian, then I would go through these circumstances with much confidence and much grace. I wouldn't struggle because everything was allowed in our lives by God and He was going to use those things for our good...so evidently I must have little faith. I struggled with my emotions. The emotions were running everywhere. I was struggling with my own health. I had just recovered from a female laprascopic surgery that wasn't nearly as easy to recover from as I was told. I was struggling with routine. Homeschool needed to start back, it was time for me to go back to work as well...and it was a huge struggle.
During that time, our pastor began a series and it felt like every week he preached on healing! I, in sort of a fun way, told him I was ready for him to find a new topic. To which I got this response in an email, "I would like to meet with you and Zine on Wednesday or Thursday at 4:00 pm. Please let me know if either of these dates will work in your schedule." BUSTED! Called to the principle's office! That's at least how I felt. After about 30 minutes of being in his office and trying to find a voice to speak, my heart began to spill. Why was my faith so weak? Why was I a disaster? That day our pastor had words for us but today I have no clue what those words are. These same conversations have continued for months now! We have had numerous opportunities for these conversations. I think he has said the same thing a gazillion different times in just a different way. I, on the other hand, have said the same thing in the exact same fashion over and over again. Why oh why do I feel so weak? Why oh why is my faith so shallow? Why oh why can I not just go through this life content? I definitely ride the short bus! I would hear the words and they would just not sink in!
But maybe...there's hope for those of us who ride the short bus. I'm beginning to grasp some truth of the situation. Yesterday our pastor was preaching out of Mark at the ending of the Parable of the Soils. The Kingdom of God is about transformation was what he centered his message on. The seed transformation initially takes place underground where there are no visible signs of transformation. But deep down transformation is happening. Then he went on to discuss the soil needed fertilizer. In my life, fertilizer is simply pressing into God. Waiting on God is the most difficult and most important thing I can do. Transformation will not happen without me pressing into God. And then he went on and said that the fruit is simple obedience. And simple obedience to Him gives life to others. What I took from his sermon...God sees where I am, my job is to press into Him, and transformation will come! Ahh, life is about transformation! And for the first time, I felt the struggle going on in my heart release a little yesterday. God sees where I am and my job is to press into Him and transformation will come. God sees where I am and my job is to press into Him and transformation will come. God sees where I am and my job is to press into Him and transformation will come!
Yes, I wrote that three times! Yes, I have said that to myself a hundred or more times today. And I said it at least one hundred times yesterday! The short bus I do ride, but sometimes I get a little understanding. I think I have finally grasped...I am doing exactly what I am supposed to be doing. What I am viewing as lack of faith and weakness are exactly what could be defined as pressing in to God and waiting on transformation. If I walked through these difficult days without a struggle, my faith would not grow. If I walked through this life, not feeling emotions, I could never grow in my understanding of how much God loves me. If I walked through this life without ever asking questions such as why, then I would never have the opportunity to know God more deeply. If I walked through this life content, then I would never know the peace that passes all understanding!
I'm waiting on the transformation! I wish I knew why I had to wait so long!! Some days I'm tired of waiting! But my job is to remember, God sees where I am and my job is to press into Him and transformation will come! I am to be still and know that He is God! His plan is to prosper me and not to harm me but to give me a hope and a future. My prayer is that I could continue to carry this little bit of truth in my heart and remember to be still and know that He is God! He sees where I am and my job is to press into Him and transformation will come! Waiting on transformation...
Friday, February 20, 2015
Stress Effects
Stress can affect our bodies in many different ways. I think each person responds differently to stress. I thought with this post I would share some of the stress effects in our family. For Krisann, she is way too young to understand what it means to be stressed but she has definitely added that word to her vocabulary and used it appropriately! I think for her the stress manifests as grumpiness, disobedience, and a need to be with me!! Oh how exhausting that can be at times!
When Chloe is stressed, she can have a multitude of responses. She can just shut down...go to bed and not arise for a long time. She can be very snippy. She experiences outbursts of tears sometimes. Chloe can even become physically ill as a result of stress. And she doesn't eat when she's stressed and when we have to closely watch her weight anyway...that's a side effect we don't like.
Conner tries to stuff stress! It works well for awhile. And then he becomes very agitated and easily frustrated. Stress changes his attitude and his tone. However, he seems to be the one who seems to handle stress better than everyone else. But as mom, I'm convinced that he will have to have long term counseling as an adult for not dealing with stress now! But then I remind myself that maybe God is just at work in his life.
Zine is like Chloe...stress takes its toll in many ways. Stress causes grumpiness. Stress can cause him to shut down and sleep all the time. Stress can affect his stomach. Stress can cause him to be teary eyed. Stress can cause his depression to be worse. Stress can cause conflict in our marriage!
For me, I carry stress from my shoulders up. Stress causes muscle pains and headaches! Stress can evoke anxiety and panic in me. Stress causes my gray hair to flourish!! Stress makes me suffer with insomnia. Stress causes me to be grumpy and not a nice wife and mama at times.
So...how do we combat stress??
For some of us, exercise is a great stress reducer. For others, diving into an art project helps us deal with our stress in healthier ways. For all of us, to have some alone time away from home and family and allow some others to love and pour into us helps us diminsh our stress levels. For the youngest, consistency and routine helps her stress. For my children to have alone time with each of us as parents helps them as well. Essential oils, massages, and chiropractor visits are sometimes a recipe for stress reduction. We are not afraid to say that anti depressants and anxiety meds are quite commonplace around here as well. But above all these, the best way to battle stress is to turn our attention and focus to God. Hebrews 4:16 says let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our times of need. When our circumstances are unmanageable, we desperately try to turn our thoughts to Him and ask for His intervention.
For a long time I struggled with feeling desperate. Surely good Christians do not become desperate!! I have come to understand this is a lie Satan loves for me to believe. As, I have studied more scripture, that is exactly what God desires. It is when I come to Him desperately needing intervention, that He can do a mighty work. Four friends were desperate enough to cut a hole in a roof. A woman with a blood issue was desperate enough to come out of hiding just to try to touch Jesus cloak. Blind Bartimaeus sitting on the roadside to Jericho was desperate enough to yell and continue to yell for Christ despite the many who told him to be quiet. Hannah was desperate enough in her pleas before the Lord that the priest accused her of being drunk! What happened when these people became desperate...God showed up and did a mighty work! God wants to do mighty things in our desperate hearts!
If only I can have victory over the lie that so entangles my mind and heart. A desperate heart does not make me weak! A desperate heart doesn't rob me of my Christianity! A desperate heart does not make me a bad person. A desperate heart opens a door for God to do something mighty. A desperate heart allows my faith to grow. A desperate heart molds me into who God wants me to be.
A desperate heart is sure to have some affect on those stress effects.
Monday, February 16, 2015
Chemo to Nadir (low point)
With chemo, it initially makes you very sick. This time chemo was a bit more difficult! A bit more nauseous. Took some extra meds to control it. But it worked! It seems to take about a full 72 hours before Zine starts rebounding. And then he seems just fine! One would like to think that recovery is done until next time. But no...it just likes to make you think you are good. It's like it plays tricks in your mind!
So we have now entered the I feel better stage! But we know this stage only lasts for a few days. Praise the Lord his head is bald! I do not think I could ever go through that experience again! And those blood counts are dropping. By this weekend they will be at their low point, from our information it appears that low point is referred to as nadir. His blood counts can remain at their lowest points for several many days before they begin their ever so slow climb back to "normal". So for a few days this week Zine will feel better and then...it gets difficult again. Weakness and fatigue will plague him. Last time, he was cold all the time and his body temp was very low. And we know that his blood counts started out in a low range this time so this blood count drop could be lower than last time. So..what does that mean? More tired?? More fatigued? Not sure what to expect. We will walk through this and learn. Colder? Well, when it's predicted to be a low of 0 to 8...I am definitely expecting him to be much colder!!! It just may have nothing to do with chemo!! :o) I am thankful for moments when I can smile!
We are thankful for a few days of feeling better! The calm before the storm!
So we have now entered the I feel better stage! But we know this stage only lasts for a few days. Praise the Lord his head is bald! I do not think I could ever go through that experience again! And those blood counts are dropping. By this weekend they will be at their low point, from our information it appears that low point is referred to as nadir. His blood counts can remain at their lowest points for several many days before they begin their ever so slow climb back to "normal". So for a few days this week Zine will feel better and then...it gets difficult again. Weakness and fatigue will plague him. Last time, he was cold all the time and his body temp was very low. And we know that his blood counts started out in a low range this time so this blood count drop could be lower than last time. So..what does that mean? More tired?? More fatigued? Not sure what to expect. We will walk through this and learn. Colder? Well, when it's predicted to be a low of 0 to 8...I am definitely expecting him to be much colder!!! It just may have nothing to do with chemo!! :o) I am thankful for moments when I can smile!
We are thankful for a few days of feeling better! The calm before the storm!
Sunday, February 15, 2015
We Will Not Be Shaken
Music speaks to my heart more than most sermons! And through the last several months there are many songs that have brought me to tears! There are many songs that God is using in my life to teach me more about Him. I'll be sharing more about that in posts to come! But there is a song that has been the hope that I have claimed. Some days I listen to this song over and over in a day... We Will Not be Shaken.
"Though the battle rages, we will stand in the fight. Though the armies rise up against us on all sides...we will not be shaken. For in the hour of our darkest day, we won't be afraid. Hope is rising like the light of dawn, Our God is for us He has overcome! For we trust in our God, through His unfailing love, we will not be shaken."
I FEEL like my entire word has been shaken up and turned upside down and spilled out everywhere! It feels like a big mess! No...a gigantic mess! But in those times when it feels like my heart is breaking, I will listen to this song! What I am reminded of is that my foundation is in Jesus Christ! I know that! And I'm so thankful that I have complete assurance that I know Jesus as Lord! I have a personal relationship with Him. I haven't doubted that fact since I was 14 years old!! And when my foundation is with Jesus, I will stand firm. Yes, it will feel like I have been shaken! But in the middle of feeling all shaken and spilled out, my job is to trust God! His love will never fail me! He is for me!! Really, He is for me? That's where I've had to camp out and talk to God about this for awhile now. I still talk to Him about it.
My conversations sound something like this...God if you are really for me...you would not be allowing these struggles!
And God says, if you didn't have these struggles, I couldn't overcome them for you! Trust Me, Karen.
I respond: I do trust you God but...then I come up with an entire list of contingencies for when I will and will not trust Him.
--God I trust you but I'm afraid if we seek to publicly have people pray for healing in Zine and he's not healed, then I'm afraid my faith isn't strong enough. I don't want to put myself in a place where if you didn't heal that I would be bitter!
--God I trust you but you don't understand the pain it is causing my entire family or else you wouldn't allow this.
--God I trust you but I'm going to hold my heart back because it feels hurt by you.
--God I trust you but my faith is shaken to its very core.
--God I trust you, but if we're going through this just so other people can see our faith and be inspired..it's not worth it God.
--God I trust you, but you obviously don't see what this disease is doing to my family!
--God I trust you, but...the list goes on.
God simply says, trust me Karen. No buts. Just trust me. In your darkest hour, trust me...don't be afraid. I am fighting for you! So...I spend many hours listening to this song and praying God help me trust you! I can't see what you are doing. It doesn't feel right and it definitely doesn't make me my heart leap with joy! But help me trust you during this time.
Some days...I do this well. Other days...I do this terribly! Some moments...I do this well. Other moments...I do this terribly. But life is all about learning to trust God daily, to trust God each moment. I shall definitely NOT be perfect! So...my goal is when I am in those moments when I can't breathe and I feel shaken and spilled out, to come to this song and let it be a reminder to me that I will not be shaken if I trust in Him! He is for me! Help me not be afraid, Jesus. Give me hope, Father! Help me stand in the fight and not give up! Help me step back and let you fight for me! Help me trust you with no buts!
"Though the battle rages, we will stand in the fight. Though the armies rise up against us on all sides...we will not be shaken. For in the hour of our darkest day, we won't be afraid. Hope is rising like the light of dawn, Our God is for us He has overcome! For we trust in our God, through His unfailing love, we will not be shaken."
I FEEL like my entire word has been shaken up and turned upside down and spilled out everywhere! It feels like a big mess! No...a gigantic mess! But in those times when it feels like my heart is breaking, I will listen to this song! What I am reminded of is that my foundation is in Jesus Christ! I know that! And I'm so thankful that I have complete assurance that I know Jesus as Lord! I have a personal relationship with Him. I haven't doubted that fact since I was 14 years old!! And when my foundation is with Jesus, I will stand firm. Yes, it will feel like I have been shaken! But in the middle of feeling all shaken and spilled out, my job is to trust God! His love will never fail me! He is for me!! Really, He is for me? That's where I've had to camp out and talk to God about this for awhile now. I still talk to Him about it.
My conversations sound something like this...God if you are really for me...you would not be allowing these struggles!
And God says, if you didn't have these struggles, I couldn't overcome them for you! Trust Me, Karen.
I respond: I do trust you God but...then I come up with an entire list of contingencies for when I will and will not trust Him.
--God I trust you but I'm afraid if we seek to publicly have people pray for healing in Zine and he's not healed, then I'm afraid my faith isn't strong enough. I don't want to put myself in a place where if you didn't heal that I would be bitter!
--God I trust you but you don't understand the pain it is causing my entire family or else you wouldn't allow this.
--God I trust you but I'm going to hold my heart back because it feels hurt by you.
--God I trust you but my faith is shaken to its very core.
--God I trust you, but if we're going through this just so other people can see our faith and be inspired..it's not worth it God.
--God I trust you, but you obviously don't see what this disease is doing to my family!
--God I trust you, but...the list goes on.
God simply says, trust me Karen. No buts. Just trust me. In your darkest hour, trust me...don't be afraid. I am fighting for you! So...I spend many hours listening to this song and praying God help me trust you! I can't see what you are doing. It doesn't feel right and it definitely doesn't make me my heart leap with joy! But help me trust you during this time.
Some days...I do this well. Other days...I do this terribly! Some moments...I do this well. Other moments...I do this terribly. But life is all about learning to trust God daily, to trust God each moment. I shall definitely NOT be perfect! So...my goal is when I am in those moments when I can't breathe and I feel shaken and spilled out, to come to this song and let it be a reminder to me that I will not be shaken if I trust in Him! He is for me! Help me not be afraid, Jesus. Give me hope, Father! Help me stand in the fight and not give up! Help me step back and let you fight for me! Help me trust you with no buts!
Friday, February 13, 2015
Valentines Void
Valentines Day is tomorrow...the happy day where you give roses and gifts to your loved ones. You go out to eat with your spouse or you have a special meal at home together. My oh my, on this special day romantic couples most definitely have sex. Did I just say that word on my blog? Yep, I did!!
I used to love this holiday! Zine and I rarely went out on Valentines Day but we did celebrate it at home and in other ways. And Zine always bought me flowers or a gift. Sex...well I just won't embarrass you to tell you all about that! At least not now! I do have some fun stories though! I remember lots of fun Valentines Day together, when doing things was easier.
But today...I made myself go through the emotions of planning something fun for the family! The Melting Pot right here. I made cheese fondue, broth and cooked my meat just like at The Melting Pot and Chocolate Caramel Fondue. I envisioned it being a sweet special event but instead it felt more like a regular meal. And oh wait, don't forget in the middle of the meal it's time for medicine to keep Zine from becoming incredibly sick. But...there is something to be said for going through the routine right?
There are no Valentines presents, no Valentines flowers this year. Definitely no sex!! Just a constant reminder of where we are in life!
But on the flip side, I am so blessed to get to be Zine's wife! I'm soooo glad I get to do that and not someone else! Despite the heartache going on now, I would not trade my role as his wife for anything! So as the Valentines void fills my heart, I try to remember that I am so blessed to be able to be his wife! There is no one who is good enough or smart enough or loving enough to be Zine's wife! Only me! Not that I'm good or smart or loving all the time!! But, I'm glad it's me and it's one area of my life that I am confident in...my love for Zine is strong!!
I love you Zine Brooks Smith!! And I'm beyond blessed and extremely grateful to walk this road of life with you! Even with the heartache...I'm still glad I get to be with you!
I used to love this holiday! Zine and I rarely went out on Valentines Day but we did celebrate it at home and in other ways. And Zine always bought me flowers or a gift. Sex...well I just won't embarrass you to tell you all about that! At least not now! I do have some fun stories though! I remember lots of fun Valentines Day together, when doing things was easier.
But today...I made myself go through the emotions of planning something fun for the family! The Melting Pot right here. I made cheese fondue, broth and cooked my meat just like at The Melting Pot and Chocolate Caramel Fondue. I envisioned it being a sweet special event but instead it felt more like a regular meal. And oh wait, don't forget in the middle of the meal it's time for medicine to keep Zine from becoming incredibly sick. But...there is something to be said for going through the routine right?
There are no Valentines presents, no Valentines flowers this year. Definitely no sex!! Just a constant reminder of where we are in life!
But on the flip side, I am so blessed to get to be Zine's wife! I'm soooo glad I get to do that and not someone else! Despite the heartache going on now, I would not trade my role as his wife for anything! So as the Valentines void fills my heart, I try to remember that I am so blessed to be able to be his wife! There is no one who is good enough or smart enough or loving enough to be Zine's wife! Only me! Not that I'm good or smart or loving all the time!! But, I'm glad it's me and it's one area of my life that I am confident in...my love for Zine is strong!!
I love you Zine Brooks Smith!! And I'm beyond blessed and extremely grateful to walk this road of life with you! Even with the heartache...I'm still glad I get to be with you!
Wednesday, February 11, 2015
Chemo...Round Two
I'm sure there are many details I left out but I am using this post to bring my blog current. Now...I can spend more time really sharing what is going on in our lives! Rather than just facts!
Zine had his second round of chemo today. The logistics went faster today...which was nice. The results are the same. Pale face, nausea, and extreme fatigue. Last time we started out with a great blood count but even now 8 weeks past chemo, his blood counts are still low! So I am expecting this round to be a harder recovery!
The nurses are still nice. The chemo is still blue. The port is still there. The fear of the future is still there. For Zine, the self condemnation of stealing my time and the failure to work 40 hours in a week is still there. For me, the same aloneness is still there. It just sucks! But on the flip side...those sweet friends that send you text messages early in the morning telling you they are praying for you are still there. Those friends that come to my rescue as a surrogate parent are still there. The people pouring into my big kids and loving them are still there. That friend that calls you after she's worked all day is still there. The all knowing God who sees each detail of our life is still there.
Some days you just have to rest in knowing that you survived your day through God's strength. Today was one of those days. But tomorrow is a new day! And each day is a gift from God.
Even today was a gift from God. Yes, it was difficult and crazy. From a drs. visit to chemo with Zine. Flew in here for 30 minutes and then back out the door to take Chloe to a drs. appt. It was still a gift from God.
We met a lady today getting chemo. She is 95 years old! We began to talk to her daughter who was there with her. Had a sweet conversation. I was able to speak to the daughter about how difficult it is to take care of your mama! And the 95 year old mama, well she was quite the character. She popped right up out of that recliner and she was off! I told her I hoped I looked that good when I was 95. So this 95 year old lady proceeded to tell me all the good things she had going for her!! Never once did she complain that she had cancer. Never once did she say she hurt. She only said the good things she had going for her. My response, God has blessed you so much!! Yes, indeed, everyday is a gift from God and I love how God gave me encouragement through a 95 year old lady today that everyday is from Him! I wanna be like her when I'm 95...if I'm still here.
But between you and me, I'm secretly wishing and praying that Jesus would come back before then!
Zine had his second round of chemo today. The logistics went faster today...which was nice. The results are the same. Pale face, nausea, and extreme fatigue. Last time we started out with a great blood count but even now 8 weeks past chemo, his blood counts are still low! So I am expecting this round to be a harder recovery!
The nurses are still nice. The chemo is still blue. The port is still there. The fear of the future is still there. For Zine, the self condemnation of stealing my time and the failure to work 40 hours in a week is still there. For me, the same aloneness is still there. It just sucks! But on the flip side...those sweet friends that send you text messages early in the morning telling you they are praying for you are still there. Those friends that come to my rescue as a surrogate parent are still there. The people pouring into my big kids and loving them are still there. That friend that calls you after she's worked all day is still there. The all knowing God who sees each detail of our life is still there.
Some days you just have to rest in knowing that you survived your day through God's strength. Today was one of those days. But tomorrow is a new day! And each day is a gift from God.
Even today was a gift from God. Yes, it was difficult and crazy. From a drs. visit to chemo with Zine. Flew in here for 30 minutes and then back out the door to take Chloe to a drs. appt. It was still a gift from God.
We met a lady today getting chemo. She is 95 years old! We began to talk to her daughter who was there with her. Had a sweet conversation. I was able to speak to the daughter about how difficult it is to take care of your mama! And the 95 year old mama, well she was quite the character. She popped right up out of that recliner and she was off! I told her I hoped I looked that good when I was 95. So this 95 year old lady proceeded to tell me all the good things she had going for her!! Never once did she complain that she had cancer. Never once did she say she hurt. She only said the good things she had going for her. My response, God has blessed you so much!! Yes, indeed, everyday is a gift from God and I love how God gave me encouragement through a 95 year old lady today that everyday is from Him! I wanna be like her when I'm 95...if I'm still here.
But between you and me, I'm secretly wishing and praying that Jesus would come back before then!
Our First Christmas not in Arkansas
Well, due to low blood counts, we made the decision to not make a trip to Arkansas and be exposed to new germs and then just thought the trip would be really hard for Zine. So...we stay here. It's the first time in 40 years I will not sleep in my parent's house on Christmas Eve.
I know our decision did not make either my family nor Zine's family happy. But...it is what it is. There's lot to life that's not happy right now...welcome to our world.
We drew some parameters around the fact that we wanted time alone on Christmas. Just too emotional to have people all in our house. We wanted a quiet day. We wanted to be alone to open our secret Santa presents. And we wanted some time to maybe develop a routine unique to our family. Zine and I both feel that the boundary we put around our actual Christmas day did not bless some of our family members. We gave the opportunity between us and everyone to discuss the conflict it might have caused in their hearts. However, that opportunity was not accepted. So...we really hate that we possibly offended some family members, and would have loved to be able to work things out. But...we are only responsible for that which we know. If our family chooses to be angry with us about our decision but refuse to discuss it with us, then there is absolutely no reason to hold a grudge against us and there is absolutely nothing we can do in regards to that. Our assessment of the situations could also be inaccurate. So unless we are communicated with, we can not be responsible for hurt feelings. I'm sure that we are not the only family to have drama. I feel like we have drama in our family all the time. But I do not feel one ounce bad about putting a boundary around our Christmas Day!
We were never able to see Zine's family over Christmas. We did see my family for just a few hours the day after Christmas but my mom was having such a TERRIBLE day that it was not even fun! Alzheimer's disease is not fun at all either!!
So Christmas season was quiet and much different than normal. But it was not bad! I think for our current state, it was the best decision ever! Change is not always bad! If I only could convince myself and others of that in other areas of our lives!
I know our decision did not make either my family nor Zine's family happy. But...it is what it is. There's lot to life that's not happy right now...welcome to our world.
We drew some parameters around the fact that we wanted time alone on Christmas. Just too emotional to have people all in our house. We wanted a quiet day. We wanted to be alone to open our secret Santa presents. And we wanted some time to maybe develop a routine unique to our family. Zine and I both feel that the boundary we put around our actual Christmas day did not bless some of our family members. We gave the opportunity between us and everyone to discuss the conflict it might have caused in their hearts. However, that opportunity was not accepted. So...we really hate that we possibly offended some family members, and would have loved to be able to work things out. But...we are only responsible for that which we know. If our family chooses to be angry with us about our decision but refuse to discuss it with us, then there is absolutely no reason to hold a grudge against us and there is absolutely nothing we can do in regards to that. Our assessment of the situations could also be inaccurate. So unless we are communicated with, we can not be responsible for hurt feelings. I'm sure that we are not the only family to have drama. I feel like we have drama in our family all the time. But I do not feel one ounce bad about putting a boundary around our Christmas Day!
We were never able to see Zine's family over Christmas. We did see my family for just a few hours the day after Christmas but my mom was having such a TERRIBLE day that it was not even fun! Alzheimer's disease is not fun at all either!!
So Christmas season was quiet and much different than normal. But it was not bad! I think for our current state, it was the best decision ever! Change is not always bad! If I only could convince myself and others of that in other areas of our lives!
Bald Friends
Zine has such great friends!! Several of his friends shaved their heads as way to show support!
Our pastor and Zine's first friend in Huntsville! Jeremy and Zine were in the same office as Teaching Assistants at UAH! Jeremy was a friend that was prayed for very much. Zine had prayed and prayed that when he entered the science field at UAH that God would give him a friend of like faith! And on the 2nd day...these Zine and Jeremy met! That was in 1993! So...they've been friends for awhile.
And not only our pastor but our pastor and his sons shaved their heads as well!!
Oh....and I think some of those drama nights took root in them...just meet the new Anna and Elsa!
Bald friends are definitely some of the best!!
Our pastor and Zine's first friend in Huntsville! Jeremy and Zine were in the same office as Teaching Assistants at UAH! Jeremy was a friend that was prayed for very much. Zine had prayed and prayed that when he entered the science field at UAH that God would give him a friend of like faith! And on the 2nd day...these Zine and Jeremy met! That was in 1993! So...they've been friends for awhile.
And not only our pastor but our pastor and his sons shaved their heads as well!!
The drama daddies!! These two got to know each other at the children's theater where our children were involved. Little did we know that we would develop such a sweet relationship with them and that they would now be some of our biggest supporters!
The journey to bald
This blog entry I have never voiced before. Many of my updates I have taken from my facebook posts to help bring my blog up to date. However, this blog post, is one I have never written before. The pictures here are never before seen pictures because the pain was too raw to share. This post is one I wish I could forget but know that I will go to my grave with images from this day etched in my mind.
Everyone said when you hair starts falling out shave it. Zine's hair started falling out. He came in from work 2 weeks from chemo and it was noticeable his hair was missing. He got up the next morning and even more hair was missing. Yes indeed watching your hair fall out is truly terrible!
Early that morning I happened upon our pastor and his wife as I was finishing up some Christmas shopping. We discussed the hair loss. Our pastor volunteered to come shave his head. I so self reliantly said I could do it. However, as the day progressed and Zine and I began to discuss the decision, I became more and more emotional about it. I've cut his hair for years now but I've never shaved his head. And the reason behind shaving was killing my heart.
Zine, being the loving husband he is, said, call Michael. This is just too much for you...you don't have to do this so let's let Michael do it. So, I texted our pastor and we set a time for him to come out. When my doorbell rang, my heart stopped beating I'm pretty sure. I opened the door because that's what your supposed to do. I saw sweet Michael. And I don't know if he has ever had anyone slam the door in his face...but I so wanted to! I wanted to say this isn't happening. Life has reverted back to normal! But...life hadn't. So...I didn't slam the door.
There was a little bit of small talk but the tension was so great our pastor just said let's do this. And before we start, let's pray. No clue what he prayed because I only focused on not throwing up and remembering to breathe. And then life forever changed once again, or at least my heart forever changed in that moment.
I have no words for the emotions that were so overwhelming me! The moments after were some of the most difficult and awkward moments ever!! What does one say at this point? We just sort of looked at each other and no one said a word. Eventually our pastor says to Krisann, what do you think of your dad's head?? Krisann very quickly said she didn't like it and it was ugly! What do I say to that? Actually, I said nothing!! And neither did anyone else. Finally our pastor says, let me go to the car and get your hat which another friend had bought for Zine. When he walks out the door, I literally hang onto Zine and sob! My heart is crushed for where we are! My heart is crushed for my sweet husband having to endure so much. My heart is crushed for my entire family who has to go through sooo much!!
The hat comes in! So there was a bit of excitement as Zine tried on his new hat!
And then...I fall apart again! In some ways this is a beautiful thing. Zine and I had the perfect marriage, the perfect family despite having a daughter with muscular dystrophy. Life was still good. But when MS struck our home, it shattered our lives. All of a sudden instead of sharing everything together we were grieving alone. We couldn't grieve with each other. If I allowed him to see grief, he felt responsible for my grief. When he grieved in my presence, then I would become grieved and we ended up at the same spot. So the fact that I was able to just hold onto my husband and cry was a sweet picture of a lot of work we have put into our marriage. And I am so grateful that God allowed us that moment together.
All the while this is going on Krisann was very bothered. She has never been with our pastor very much but I noticed she was standing right beside him. So...what does our pastor do? One would never guess. Or if you did, you might say his work was done and he left or you might suggest that he prayed with us or he hugged us. But what happened next was a priceless moment! Our pastor began to talk to Krisann and before I knew it, our pastor gave Zine and I some time to be with each other and he played with Krisann. This picture will always be one that I cherish!!
What a sweet gift that Michael gave our family that night. And what a priceless memory I have to cherish here. And the beginning of a relationship between this child who in her lifetime is going to endure so many heartaches in her life to have this man sit in the floor and play with her. What a blessing to have a man sit down in the floor with her. But a tender spot in both our lives that Zine is not able to sit in the floor and play with own child!
God brings people into our lives at just the right time and this is an example of when we hired our pastor I had no clue the impact he was going to play in the life of my own family!! Not to mention, his wife has poured much, much truth into my life!!
The journey to bald, has been a definite difficult journey! A week later I am still crying nonstop. Finally met with our pastor's wife and a counselor friend. After discussion, we decided my emotional response to the bald head is that it is just a visual symbol of lack of control. I never thought I needed to be in control but man, oh man, I think I do! Trying to remember, God is in control...not me! And all good Christians will say yes God is in control. But I'm here to tell you, even when we say that, we don't really mean it. It's just a good Christian statement. A shallow statement at that. We have our lives planned out! We know what they are supposed to look like...and this my friends, is NOT what my life is supposed to look like! But whether this is what God intended it to look like or not doesn't matter. Nothing comes to us that hasn't passed through Him! And He will work good thru every situation in our lives. That I do believe. I don't know what good God is going to work, but I know He is going to work good! That's a promise in His Word. Hanging on to that promise!!
Everyone said when you hair starts falling out shave it. Zine's hair started falling out. He came in from work 2 weeks from chemo and it was noticeable his hair was missing. He got up the next morning and even more hair was missing. Yes indeed watching your hair fall out is truly terrible!
Early that morning I happened upon our pastor and his wife as I was finishing up some Christmas shopping. We discussed the hair loss. Our pastor volunteered to come shave his head. I so self reliantly said I could do it. However, as the day progressed and Zine and I began to discuss the decision, I became more and more emotional about it. I've cut his hair for years now but I've never shaved his head. And the reason behind shaving was killing my heart.
Zine, being the loving husband he is, said, call Michael. This is just too much for you...you don't have to do this so let's let Michael do it. So, I texted our pastor and we set a time for him to come out. When my doorbell rang, my heart stopped beating I'm pretty sure. I opened the door because that's what your supposed to do. I saw sweet Michael. And I don't know if he has ever had anyone slam the door in his face...but I so wanted to! I wanted to say this isn't happening. Life has reverted back to normal! But...life hadn't. So...I didn't slam the door.
There was a little bit of small talk but the tension was so great our pastor just said let's do this. And before we start, let's pray. No clue what he prayed because I only focused on not throwing up and remembering to breathe. And then life forever changed once again, or at least my heart forever changed in that moment.
So thankful for a pastor who loves so well. Think this was a first for him to shave someone else's head because chemo was making it fall out! And he was so pulled between shaving Zine's head and hugging me. If there's one thing I have learned about Michael the past month...he doesn't want anyone to cry alone! But on this particular night, he did the hard thing. He did what needed to be done.
When he was done, this is all the hair I had to sweep up. Not much...
The hat comes in! So there was a bit of excitement as Zine tried on his new hat!
And then...I fall apart again! In some ways this is a beautiful thing. Zine and I had the perfect marriage, the perfect family despite having a daughter with muscular dystrophy. Life was still good. But when MS struck our home, it shattered our lives. All of a sudden instead of sharing everything together we were grieving alone. We couldn't grieve with each other. If I allowed him to see grief, he felt responsible for my grief. When he grieved in my presence, then I would become grieved and we ended up at the same spot. So the fact that I was able to just hold onto my husband and cry was a sweet picture of a lot of work we have put into our marriage. And I am so grateful that God allowed us that moment together.
All the while this is going on Krisann was very bothered. She has never been with our pastor very much but I noticed she was standing right beside him. So...what does our pastor do? One would never guess. Or if you did, you might say his work was done and he left or you might suggest that he prayed with us or he hugged us. But what happened next was a priceless moment! Our pastor began to talk to Krisann and before I knew it, our pastor gave Zine and I some time to be with each other and he played with Krisann. This picture will always be one that I cherish!!
God brings people into our lives at just the right time and this is an example of when we hired our pastor I had no clue the impact he was going to play in the life of my own family!! Not to mention, his wife has poured much, much truth into my life!!
The journey to bald, has been a definite difficult journey! A week later I am still crying nonstop. Finally met with our pastor's wife and a counselor friend. After discussion, we decided my emotional response to the bald head is that it is just a visual symbol of lack of control. I never thought I needed to be in control but man, oh man, I think I do! Trying to remember, God is in control...not me! And all good Christians will say yes God is in control. But I'm here to tell you, even when we say that, we don't really mean it. It's just a good Christian statement. A shallow statement at that. We have our lives planned out! We know what they are supposed to look like...and this my friends, is NOT what my life is supposed to look like! But whether this is what God intended it to look like or not doesn't matter. Nothing comes to us that hasn't passed through Him! And He will work good thru every situation in our lives. That I do believe. I don't know what good God is going to work, but I know He is going to work good! That's a promise in His Word. Hanging on to that promise!!
Tuesday, February 10, 2015
Overwhelmed by Santa
There's been very few times in my life when I have been utterly speechless...tonight was one of those. There was this Santa...red suit, black belt, I think he had a beard! I have no clue if he had black boots or not. But...he was standing at my car in the parking lot with presents. Just about the time I was about to turn and run the other way...he started walking towards me and began talking to Krisann. It's a dog gone good thing I had Krisann with me or else I would have probably had a come apart moment. I am truly hoping there were no hidden cameras around. I'm afraid that Santa had an undercover video recorder or something!! Oh how I hope there is not a Santa cam!!
So after a few moments of having no clue what to do Santa says well can you open your trunk and let's see about getting these gifts in here. But remember, you can't open them until Christmas. So In my non functioning moment Santa loads presents into my car. And then hugs me and walks away. He said some more things but I can't remember. I drive up to get my big kids and you can only imagine the conversations that ensued after they had to ride home holding gift bags. And Zine's response was similar to mine Speechless. I told him it could always be worse...you could be standing in a parking lot with a Santa giving you these presents. At least it was your wife!! I called a friend and asked if she knew and she didn't. She kept saying Santa?? I was like yeah the guy in the red suit!! So I have no information about this Santa.
And there wasn't just a few presents...there were 5 bags like this!!
This is a picture of Chloe crying because she didn't need anything for Christmas! And that was Zine giving everyone a lesson on what it means to receive gifts we could never even imagine. So thankful for him taking up that conversation last night! My pastors wife told me last night to overflow with praise and thanksgiving....after she laughed at my situation with Santa! :o) Now...let me just say God has been at work in my life the past few months. He's been doing a work and it has not always been pretty. There have been many tears, struggles, and heartaches. An unbelievable life over the past month to say the least from a medical perspective...doctors, surgeries, new meds, chemo some of it all came in the matter of 1 week! Overwhelmed at times...most definitely! I have sat in the floor of my 5 year old's room and sobbed...because it happened to be a moment that this mamma just lost it! I have made dashes to the bathroom because my nerves were about to overflow from my mouth. I have seen darkness and it's not very heartwarming! But from one who loves to give and not receive...the past month has come with many challenges for me personally. I have had a friend who literally has reminded me to breathe in moments when my emotions were overflowing! I have had people babysit Krisann, cook meals, clean my house, and take Chloe to get her allergy shots. I have opened envelopes with checks, cash, and gift cards that have made me cry and wonder how in the world I could ever write all the thank you notes and repay the kindness that has been shown! But last night in my complete shock, I was totally overwhelmed with emotion. I wanted to overflow with praise and thanksgiving but instead I struggled. I struggled with feeling guilty. We are needy...but not that needy! I don't want people going to all this fuss over us. These struggles in our lives aren't going away in the next few months unless God works a miracle. My flesh says...don't wear yourself out! I think I've let God tear down the walls of pride and then they show up in a fresh and new way last night!!! We don't deserve to be loved and cherished like our friends and family are loving and cherishing us. If you think that we are that great....you should hang around me more! And not only do we not deserve it, it's not necessary. We will continue to move forward in life because that's our only option! And trust me...I'm still working through these not so beautiful feelings!! So...the funny story...and it was funny...it can make me laugh hysterically some moments...has another side to it! A not pretty part.
This is a live picture from my class today. Now...I was talking about the city of Jerusalem being an important city to many different religions and why in history. But...this picture communicates a thousand words to me right now based upon everything going on in life! What I don't fathom...is exactly how much God loves me! I have always said that God loves me. I don't think that love has penetrated to my heart! But...there's something very significant going on in my heart right now and that is God is teaching me a completely new level of how much He loves me! God's love is going to take root in my heart, the knowledge in my head will eventually be believed in my heart, and I can't even imagine what God is going to do with the lessons that He is teaching me through this season! Santas in empty parking lots, they may always make me a bit on the jumpy side though! And that Santa...I may never know in this world where he came from and may never know from whence his gifts came from...but my job is to remember how much God loves me! He loves me enough to stretch out his arms on a cross and die for me. Definitely undeserved!! But He loves me and not only does He love me enough to die for me, He loves me enough to send others to walk through some of the most difficult days of my life. I shall forever be thankful and will always carry with me this season in my heart. Now...this does not mean that I'm going to be a professional at asking for and receiving help! But I'm going to try to remember that God is doing a work in my life through this process and I want to learn everything He wants me to learn in this! I still want Him to heal but I definitely want to learn what He wants to teach me! Sounds a lot like a sermon I heard on Sunday!!! I hope you enjoyed my crazy Santa story. It was at first exceptionally scary! I was very uncertain about the Santa in the parking lot. It was quite humbling! It was quite hilarious as I try to tell my teenagers that there was a Santa in the parking lot when I couldn't even get words out! It was even more hilarious that my friend kept saying, Santa?? Really Santa?? And I would say yes really Santa...you know the guy in the red suit! It was such a God statement that my 5 year old made that touched my heart. It was so tender to hear my husband share his view of everything with our kids and me! His faith is so much stronger than mine sometimes! It is unimagineable what God is doing in my heart right now! And if you want to laugh, just come ask me to tell my Santa story! It will definitely make you laugh! But if you want your life to be changed, I hope my Santa story and what God is doing in my life will give you a glimpse into what He has done for you and what He would like to do in your heart! My season for now is that despite God not choosing to heal my husband, He is lavishing His love on me in unimaginable ways. And I am thankful! But what He wants to do in my life...He wants to do in yours too! Thanks for journeying with me through this story! One day, your comments I might use in my book if God ever gives me time to write!
So after a few moments of having no clue what to do Santa says well can you open your trunk and let's see about getting these gifts in here. But remember, you can't open them until Christmas. So In my non functioning moment Santa loads presents into my car. And then hugs me and walks away. He said some more things but I can't remember. I drive up to get my big kids and you can only imagine the conversations that ensued after they had to ride home holding gift bags. And Zine's response was similar to mine Speechless. I told him it could always be worse...you could be standing in a parking lot with a Santa giving you these presents. At least it was your wife!! I called a friend and asked if she knew and she didn't. She kept saying Santa?? I was like yeah the guy in the red suit!! So I have no information about this Santa.
And there wasn't just a few presents...there were 5 bags like this!!
So we have gifts under our tree. I still don't know from whom they came other than Santa nor the story behind the gifts. An hour or so later still overwhelmed and speechless I take Krisann to bed. We always pray together. I literally was having issues getting words out. I prayed out loud and just said I was overwhelmed. I prayed that I thought I was supposed to say thank you for that Santa. And Krisann interrupted me and you can hear for yourself what she said!
After taking Krisann to bed, I come back to Living Room and discover this scene.
This is a live picture from my class today. Now...I was talking about the city of Jerusalem being an important city to many different religions and why in history. But...this picture communicates a thousand words to me right now based upon everything going on in life! What I don't fathom...is exactly how much God loves me! I have always said that God loves me. I don't think that love has penetrated to my heart! But...there's something very significant going on in my heart right now and that is God is teaching me a completely new level of how much He loves me! God's love is going to take root in my heart, the knowledge in my head will eventually be believed in my heart, and I can't even imagine what God is going to do with the lessons that He is teaching me through this season! Santas in empty parking lots, they may always make me a bit on the jumpy side though! And that Santa...I may never know in this world where he came from and may never know from whence his gifts came from...but my job is to remember how much God loves me! He loves me enough to stretch out his arms on a cross and die for me. Definitely undeserved!! But He loves me and not only does He love me enough to die for me, He loves me enough to send others to walk through some of the most difficult days of my life. I shall forever be thankful and will always carry with me this season in my heart. Now...this does not mean that I'm going to be a professional at asking for and receiving help! But I'm going to try to remember that God is doing a work in my life through this process and I want to learn everything He wants me to learn in this! I still want Him to heal but I definitely want to learn what He wants to teach me! Sounds a lot like a sermon I heard on Sunday!!! I hope you enjoyed my crazy Santa story. It was at first exceptionally scary! I was very uncertain about the Santa in the parking lot. It was quite humbling! It was quite hilarious as I try to tell my teenagers that there was a Santa in the parking lot when I couldn't even get words out! It was even more hilarious that my friend kept saying, Santa?? Really Santa?? And I would say yes really Santa...you know the guy in the red suit! It was such a God statement that my 5 year old made that touched my heart. It was so tender to hear my husband share his view of everything with our kids and me! His faith is so much stronger than mine sometimes! It is unimagineable what God is doing in my heart right now! And if you want to laugh, just come ask me to tell my Santa story! It will definitely make you laugh! But if you want your life to be changed, I hope my Santa story and what God is doing in my life will give you a glimpse into what He has done for you and what He would like to do in your heart! My season for now is that despite God not choosing to heal my husband, He is lavishing His love on me in unimaginable ways. And I am thankful! But what He wants to do in my life...He wants to do in yours too! Thanks for journeying with me through this story! One day, your comments I might use in my book if God ever gives me time to write!
He Makes Everything Beautiful In Its Time
To sum it up...we had pallets that were cut apart and stacked up and then decorated with ligths and poinsettas. The most beautiful Christmas tree ever to say the least. Indeed some old torn up pallets can be made into something beautiful!
I will forever be grateful for this service! In the middle of brokenness, a reminder that He makes everything beautiful in His time. Claiming that promise!
Monday, February 9, 2015
After effects
My husband is going to kill me for posting these pics!! But I will remind him I could have posted a picture of his permanent cath. . But you guys are walking with us through this journey. Not going to gloss it over for you!! This road although we try to walk with much faith there is a lot of this road that is not easy and not pretty. Zine has taken meds for nausea. He is pale pale pale! And his port just makes me purely ill. His chest is very tender and sore today. When we arrived today he was ready to leave without going in and dreading it!! But he has been sooo much braver than I would be!!!
Ever wonder what a port looks like the day after they place it?
And...the pale face? Well, here it is!
Oh, and another side effect...his blood counts drop so he's always exceptionally tired and cold! Which means he stays covered up and he sleeps a lot!
Poor guy! He's such a trooper to let me put our journey out there!! And he HATES for his picture to be made!! And he said that he didn't give permission for this picture to be taken! :o)
And...with chemo and low blood counts, a mask is a necessity! And if you're gonna wear a mask, why not let your girls decorate it! I think this deserves the Best Dad Award Ever!!
And...with chemo and low blood counts, a mask is a necessity! And if you're gonna wear a mask, why not let your girls decorate it! I think this deserves the Best Dad Award Ever!!
CHEMO is horrible! But it saves many people's lives...so we hope and pray it works for him!
First Chemo
Dec. 5, 2014...Zine's first chemo treatment...
Here's an update that I wrote as we began our day...
There have been so many moments of feeling certain that I am going to turn around and life will be back to the way it was. But yet, continually reminded differently. Some moments are lighter than others! Thank goodness. Some moments just make me physically ill. Some moments God uses His word or some of my friends to speak
His love. Some moments stress just causes pain in my body. Some moments I cry. Some moments I am afraid! Thankful that in each of those moments God is there! Thankful, that even though my body feels sick from the stress and it is an experience today that evokes much fear in me, I know God is with us. And He even promises us hundreds of times in scripture to not fear for He is with us. Claiming that promise as I begin my day today. God is in the moments of life! And He is going to be in the moments of my life today! Thank goodness!!
Not only is it a first chemo day...Chloe is sick! Is she sick sick or have her emotions made her sick? Nonetheless, for a mama to walk out and leave their 14 year old daughter in bed with a low grade fever and throwing up only to go face a chemo treatment. Not sure that there's anything more heart wrenching for a mama!!
Here we are sitting in the infusion center, trying to not throw up...waiting on the first chemo treatment. Amidst this chaos, it is so refreshing to have sweet nurses taking care of you. Every nurse here is as sweet as sweet can be!
First things first, blood work!! Always the first thing they do here!
Then they start an IV that gives antinauea medicine. This will take about an hour to hour and half for it to be done.
And now...it's time for chemo.
The chemo is blue. Smurf blue! The nurse who came to administer the drug is dressed in rubber gloves, rubber gown, covered face, quite unnerving to say the least. Zine said, you have to dress like that to put this stuff in my body and I'm letting you put it in me...there is definitely an issue here! But even so, the poison begins to drip. And as the posion begins to drip in his body thru his port, my lunch that I didn't even eat feels like it is coming back up! So glad a bathroom was nearby! So here I stand in a bathroom in the cancer center. The walls in the bathroom are literally spinning around me. I am sweaty, clammy, hot. Tears are rolling quickly down my cheeks. And what am I doing here...I am praying. I am praying that God would heal, that God would intervene, that we would not have to do this. But yet reality is we are still doing it! But right there in that bathroom, I prayed God for now, just calm my anxious heart. And that's exactly what he did. I regained my composure, I went and rejoined Zine. Before this bag of chemo has dripped thru, every ounce of color leaves my love's face! He goes from looking like a healthy person (other than the fact he uses a wheelchair) to a sickly looking person. Oh how my heart hurts! And then his mouth becomes dry and his voice sounds shaky. We give him something to drink.
And then I think...who else spent some time in a garden asking for "this cup to pass from me", who else was given a drink as he hung on a cross. Yes Jesus understands where we are. He's been there. His cup wasn't chemo...it was a cross. The cross wasn't to save his own life...it was to save mine and yours. I can't even begin to go through chemo for someone else. I'm not even getting the chemo and I'm pretty sure that neither of us would agree to take chemo for you or our neighbor down the street. Just a reminder that I needed that God does understand. I may never understand on this side of heaven why we are allowed to endure such heartbreaking events. But Jesus does! And He understands pain and heartache! At least we're not alone!
I Am Not Alone
Here's an update that I wrote as we began our day...
There have been so many moments of feeling certain that I am going to turn around and life will be back to the way it was. But yet, continually reminded differently. Some moments are lighter than others! Thank goodness. Some moments just make me physically ill. Some moments God uses His word or some of my friends to speak
His love. Some moments stress just causes pain in my body. Some moments I cry. Some moments I am afraid! Thankful that in each of those moments God is there! Thankful, that even though my body feels sick from the stress and it is an experience today that evokes much fear in me, I know God is with us. And He even promises us hundreds of times in scripture to not fear for He is with us. Claiming that promise as I begin my day today. God is in the moments of life! And He is going to be in the moments of my life today! Thank goodness!!
Not only is it a first chemo day...Chloe is sick! Is she sick sick or have her emotions made her sick? Nonetheless, for a mama to walk out and leave their 14 year old daughter in bed with a low grade fever and throwing up only to go face a chemo treatment. Not sure that there's anything more heart wrenching for a mama!!
First things first, blood work!! Always the first thing they do here!
Then they start an IV that gives antinauea medicine. This will take about an hour to hour and half for it to be done.
And now...it's time for chemo.
And then I think...who else spent some time in a garden asking for "this cup to pass from me", who else was given a drink as he hung on a cross. Yes Jesus understands where we are. He's been there. His cup wasn't chemo...it was a cross. The cross wasn't to save his own life...it was to save mine and yours. I can't even begin to go through chemo for someone else. I'm not even getting the chemo and I'm pretty sure that neither of us would agree to take chemo for you or our neighbor down the street. Just a reminder that I needed that God does understand. I may never understand on this side of heaven why we are allowed to endure such heartbreaking events. But Jesus does! And He understands pain and heartache! At least we're not alone!
I Am Not Alone
The Cancer Center
A place that no one ever ever wants to visit! On Dec. 1, we saw our oncologist for the first time. We knew the inevitable so there was no new information presented. Other than before we can take this chemo, Zine will have to have a port. The chemo is so toxic that even if a tiny bit dripped out of a vein it could be a terrible thing!! So....a port placement surgery is scheduled. We visited the infusion center and met some of the nurses. We were educated on what a port was and got to see one in person! And before that Zine must have some super duper heart test done as this chemo can affect your heart. So...on Dec. 2 Zine has a check up from his surgery with the urology from his cath surgery and on Dec. 3, Zine will have a fancy heart test done. On Dec. 4, he will go to hospital for his second surgery in the matter of a week and couple of days...a port placement! And follow that up on Friday with his first chemo treatment!
Life continues to spin out of control. We continue to put one foot in front of the other. That's the only option. We would love to just stop, sit down, cross our arms in the middle of life and quit. But...that's not an option. It doesn't accomplish anything so we keep on keeping on. That's all we can do! Keep on keeping on!
I've fallen but I can't get up!!
Remember that old commercial on TV where they advertised the life call system of some sort. It was designed for older people to wear this necklace with a button and if they fell, then they could push the button and help was on its way! Wow! I think we need one of those!!
Two nights in a row Zine fell in bathroom! This was the two days right after surgery!! So I think anethesia had something to do with his falls! However, my greatest fear came true. One of these falls were in the shower. He was wet, the floors were wet, and I could not get him up! I must have help! Thank goodness I have a strong 16 year old son in the house. So for the first time, I had to get help! Conner to the rescue!!
I can't imagine how humiliating this whole experience was for Zine. And I can't imagine how difficult it must have been for Conner. This is not the way life is supposed to be!
We are supposed to be active, taking hikes, going canoeing, playing putt-putt, etc. Instead we are stuck at home, we've fallen and we can't get up in more ways than one.
Literally a fall in the shower and we couldn't get up. But more than that, we've been knocked to the ground in life!! And we can't get up!!
Two nights in a row Zine fell in bathroom! This was the two days right after surgery!! So I think anethesia had something to do with his falls! However, my greatest fear came true. One of these falls were in the shower. He was wet, the floors were wet, and I could not get him up! I must have help! Thank goodness I have a strong 16 year old son in the house. So for the first time, I had to get help! Conner to the rescue!!
I can't imagine how humiliating this whole experience was for Zine. And I can't imagine how difficult it must have been for Conner. This is not the way life is supposed to be!
We are supposed to be active, taking hikes, going canoeing, playing putt-putt, etc. Instead we are stuck at home, we've fallen and we can't get up in more ways than one.
Literally a fall in the shower and we couldn't get up. But more than that, we've been knocked to the ground in life!! And we can't get up!!
Doctor one day surgery the next
November 24, 2014 we spent almost all day in a neurologist office. They removed the old catheter and then we waited to see if Zine's bladder would work. The end result... a lot of encouragement from the nurse, doctor, and staff came first! Secondly a very difficult decision came next. That decision was to go to surgery and for Zine to get a permanent cath. A supra-pubic catheter. This means we are dealing with this long term. There's no easy fix and it's not going away. This permanent cath is less likely to cause infections and it is supposed to be much more comfortable.
Surgery day the next morning. We are both a nervous bundle. And we were at a different hospital than we are used to. So everything is new to us as well. Stressed out for sure!
Zine did amazingly well. I know he was stressed, sad, nervous, etc. But he managed his emotions well. His wife on the other hand, didn't manage her emotions as well. It was SOOO hard to let them take him to surgery. I think the difficulty was less about the surgery and more about the reality of where we have found ourselves.
I had not spent a lot of personal time with our pastor until this day! This day changed things in that regards. Little did I know that this was the beginning of what was going to become a safe haven for Zine and I. A place where we would receive great comfort, we would continually be turned to the truth, and encouraged to learn all God wants for us. He was so attentive to me this day! He loved well! I'm not sure I have let my guards down enough around others to allow them to love well. I have built a fortress!! And it is well protected. But on this day, the walls began to crumble in his presence. He asked hard questions and I tried to answer honestly. I cried, he hugged. I walked around, he walked around with me. I listened to medical staff, he listened to medical staff. As I tried to hold Zine's feet to give them some relief from shaking...he offered to do the same. But...that was one thing he wasn't as good at as I was! Just saying! But I am sooo thankful for the time we had together that day!
Wow! What a couple of days!
Surgery day the next morning. We are both a nervous bundle. And we were at a different hospital than we are used to. So everything is new to us as well. Stressed out for sure!
Zine did amazingly well. I know he was stressed, sad, nervous, etc. But he managed his emotions well. His wife on the other hand, didn't manage her emotions as well. It was SOOO hard to let them take him to surgery. I think the difficulty was less about the surgery and more about the reality of where we have found ourselves.
I had not spent a lot of personal time with our pastor until this day! This day changed things in that regards. Little did I know that this was the beginning of what was going to become a safe haven for Zine and I. A place where we would receive great comfort, we would continually be turned to the truth, and encouraged to learn all God wants for us. He was so attentive to me this day! He loved well! I'm not sure I have let my guards down enough around others to allow them to love well. I have built a fortress!! And it is well protected. But on this day, the walls began to crumble in his presence. He asked hard questions and I tried to answer honestly. I cried, he hugged. I walked around, he walked around with me. I listened to medical staff, he listened to medical staff. As I tried to hold Zine's feet to give them some relief from shaking...he offered to do the same. But...that was one thing he wasn't as good at as I was! Just saying! But I am sooo thankful for the time we had together that day!
Wow! What a couple of days!
Praise Him in the Storm...Really?
A difficult day I had! A need to control and I had no control. People wanting to bless me and every fiber of my being screamed no. But yet God said in quiet, the answer is YES.
I called one friend and texted another. Prayer was needed! I'm pretty sure a panic attack was in the making. Feeling like I am going to crawl out of my skin. My heart is racing. I can't breathe. I want to run and run fast away as far as I can go. I never want to stop running! Quite a bizarre feeling to say the least!
The advice from my friend on the phone...Breathe Karen! Take a deep breath in and breath out. Breathe out slowly. Just breathe Karen! One would never think you needed a friend to tell you to breathe. But when you are suffocating with life, that was exactly what I needed. I would literally find myself holding my breath! I needed to be reminded to breathe!
And then I was challenged by my friend and pastor's wife...
when your heart is beating out of your chest, try praising God! Sacrificial praise she says!
Really??
I called one friend and texted another. Prayer was needed! I'm pretty sure a panic attack was in the making. Feeling like I am going to crawl out of my skin. My heart is racing. I can't breathe. I want to run and run fast away as far as I can go. I never want to stop running! Quite a bizarre feeling to say the least!
The advice from my friend on the phone...Breathe Karen! Take a deep breath in and breath out. Breathe out slowly. Just breathe Karen! One would never think you needed a friend to tell you to breathe. But when you are suffocating with life, that was exactly what I needed. I would literally find myself holding my breath! I needed to be reminded to breathe!
And then I was challenged by my friend and pastor's wife...
when your heart is beating out of your chest, try praising God! Sacrificial praise she says!
Really??
I can't do that! There is no way that I'm going to praise God in this chaos! It is too hard! There comes the struggle to the surface again...if God loved me...I wouldn't be in this room having a panic attack! I wouldn't be in the middle of a family crisis!
And then a song that I love started playing in my mind...Praise You In This Storm. Oh may I learn to praise Him despite the storm I am in! Maybe you need to be ministered by this song today!
First Urology Appt, Glasses, And Then...
November 14, a new doctor, a new office, and a new place in life...once again! Here is an update from this event in our lives.
I have been trying to decide what details to put in this post without writing a book. And to be honest in a way it is very private stuff. So how much are we willing to share had to be discussed. We met with urologist for what we thought would be prep for a procedure. However, what we discovered is that we have three different issues. One is the issue went for, spasticity in bladder. What we discovered in addition is bladder is not voiding at all. Compared it to a dam and the only thing coming out was the overflow. He also has some type of infection as well. So they put a cath in. He will keep that until a week from Monday and we will go back for some further testing. At that point we will have a more clear plan for what future holds. Our ramp remote quit working! Had to go order one of those. It can't be fixed. Thats a necessity for Zine to be able to go on his own. Then to eye dr where we discovered that Zines left eye is very significantly impaired. We will be going tomorrow to get glasses, not enough time today to accomplish that. He also has oncologist appt on Dec 1.
Another downer day for us. Can't even put into words feelings and emotions. We feel totally broken!
The next day is Saturday! On Nov. 15 after several days of not even functioning, having life as we know it fall apart, struggling with God and our situation, something happened.
The And then...
We are at the glasses store. Because my husband who has had perfect vision now needs trifocals due to the stupid disease called MS! Yes....it is a stupid disease that robs people of so many things!
But when we returned from a family outing to the glasses store because one knows that you need five opinions of which glasses look best..
(By the way, I think he looks pretty handsome in glasses!)
Upon return home...I found a blessing!! My sweet friend Londa, had come to my house and rescued it from the clutter and cleaned it! Was it perfect...no! But it was a FAR cry from where it was when she walked in! Immediately, I felt better! There were no dishes in the sink. The stacks and stacks of junk had been straightened or at least put together in one spot! The floors didn't have dog hair all over them. It was such a blessing.
How could I ever deserve that blessing? More than that, how did I ever agree to let her come?!
Well, I wasn't asked if she could come. I was told she was coming! Sometimes when people are struggling, they don't know what they need! Sometimes we just need people to do things for us! If God prompts your heart...be obedient and not scared! The day after we saw the neurologist I got an email asking if we needed some meals to be brought in. My response...I don't think so. The results...a friend prompted by God set up a mealtrain for us. Meals begin to fill my home several days a week. Needed...didn't think so! Blessed by them...absolutely! As a matter of fact for weeks, those visits and meals were instrumental in keeping us moving forward. I'm so thankful for the friends in my life who see a need and just do it! So if you ever find yourself in a situation wondering if you should do something, the answer is YES!
And what about deserving such a blessing?? Well, the truth is...I really don't! These were gifts because people loved us and wanted to demonstrate their love. Did it solve our problems? No. But it did comfort our hearts and help propelling us forward! Kind of reminds me of salvation. Did I deserve Jesus dying on the cross for me? NO!! It was a gift that I wanted to receive! I desired it!! Thank you Jesus for that ultimate sacrifice despite my unworthiness and thank you Jesus for placing people in our lives to demonstrate your love to us! Help us be willing to embrace and accept gifts from others.
I have been trying to decide what details to put in this post without writing a book. And to be honest in a way it is very private stuff. So how much are we willing to share had to be discussed. We met with urologist for what we thought would be prep for a procedure. However, what we discovered is that we have three different issues. One is the issue went for, spasticity in bladder. What we discovered in addition is bladder is not voiding at all. Compared it to a dam and the only thing coming out was the overflow. He also has some type of infection as well. So they put a cath in. He will keep that until a week from Monday and we will go back for some further testing. At that point we will have a more clear plan for what future holds. Our ramp remote quit working! Had to go order one of those. It can't be fixed. Thats a necessity for Zine to be able to go on his own. Then to eye dr where we discovered that Zines left eye is very significantly impaired. We will be going tomorrow to get glasses, not enough time today to accomplish that. He also has oncologist appt on Dec 1.
Another downer day for us. Can't even put into words feelings and emotions. We feel totally broken!
The next day is Saturday! On Nov. 15 after several days of not even functioning, having life as we know it fall apart, struggling with God and our situation, something happened.
The And then...
We are at the glasses store. Because my husband who has had perfect vision now needs trifocals due to the stupid disease called MS! Yes....it is a stupid disease that robs people of so many things!
But when we returned from a family outing to the glasses store because one knows that you need five opinions of which glasses look best..
(By the way, I think he looks pretty handsome in glasses!)
Upon return home...I found a blessing!! My sweet friend Londa, had come to my house and rescued it from the clutter and cleaned it! Was it perfect...no! But it was a FAR cry from where it was when she walked in! Immediately, I felt better! There were no dishes in the sink. The stacks and stacks of junk had been straightened or at least put together in one spot! The floors didn't have dog hair all over them. It was such a blessing.
How could I ever deserve that blessing? More than that, how did I ever agree to let her come?!
Well, I wasn't asked if she could come. I was told she was coming! Sometimes when people are struggling, they don't know what they need! Sometimes we just need people to do things for us! If God prompts your heart...be obedient and not scared! The day after we saw the neurologist I got an email asking if we needed some meals to be brought in. My response...I don't think so. The results...a friend prompted by God set up a mealtrain for us. Meals begin to fill my home several days a week. Needed...didn't think so! Blessed by them...absolutely! As a matter of fact for weeks, those visits and meals were instrumental in keeping us moving forward. I'm so thankful for the friends in my life who see a need and just do it! So if you ever find yourself in a situation wondering if you should do something, the answer is YES!
And what about deserving such a blessing?? Well, the truth is...I really don't! These were gifts because people loved us and wanted to demonstrate their love. Did it solve our problems? No. But it did comfort our hearts and help propelling us forward! Kind of reminds me of salvation. Did I deserve Jesus dying on the cross for me? NO!! It was a gift that I wanted to receive! I desired it!! Thank you Jesus for that ultimate sacrifice despite my unworthiness and thank you Jesus for placing people in our lives to demonstrate your love to us! Help us be willing to embrace and accept gifts from others.
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