Today is tough! I haven't had one of these stupid days in a long time!
I know it's because I took my family to worship! I thanked God today for HIS path my family is on! Satan hates that! He wants me to blame God! Satan is fighting of course unfairly today. He is using Kirk's disease to get at me. Kirk uttered the words "I hate you" today. This is the dreaded moment that the doctor warned me about. I prayed and prayed that God would not let me see this side of the disease. But HIS plan is not my plan. I know it is the disease talking not my Kirk. Not sure right now my heart knows that........
Today Scott Brown talked to us about faith. Man, as soon as I heard what he was going to speak on I knew the waterworks would come. This is a topic so near to my heart. He reminded me of God's promises, God's love and God's perfect plan. God knew I needed to hear this message today, because he knew before It even happened that Kirk would become angry today and say things from the depth of this horrible disease not from the depth of his own heart.
Please, as you lay your head down tonight say a prayer for strength and thick skin for us all during this time. I'm not sure what lies ahead of us. I AM sure that God has gone before us and prepared the way. HIS perfect way.......
Sunday, December 29, 2013
Friday, December 27, 2013
The Call.....
Whooooo! My household is exhausted! We have celebrated Christmas and IT has left it's mark in our hearts for another year. We have had so much fun visiting with family, staying up late, dancing to some "Just Dance", playing Ping Pong and some Heads Up! (my new favorite game). We laughed until we cried, shopped and loved on all our nieces and nephews. My two year old niece, Remy quickly found out that Uncle Kirk was the "go to guy" for whatever she wanted.
Every year "Santa Claus" AKA Uncle Kirk calls all of our nieces and nephews and extended family. This has been a tradition for the past 15 years. Even the older ones still look forward to this cherished tradition.
But this year was different.......we all knew it would be. As Christmas Eve approached I shed a few tears for the loss of those special moments that we shared each Christmas. I was not the only one that mourned this beloved tradition. My 14 year old niece, Gracie wrote her thoughts about the call from "Santa" in her journal. I was honored when she told me I could share it with you guys. She will never know how much her Uncle Kirk loves and adores her......... His Crazy Gracie Castleberry!
Christmas, you grow up learning of Santa Claus and his crazy adventures on the night of Christmas Eve. One holiday tradition could mean the world to a little brown eyed, black haired girl. Anxiously awaiting the call. The call to confirm the official Christmas list and to tell the big man you have been the best you can be. I didn't realize growing up it could be one of the most precious puzzle pieces I could never receive back. Last year my parents broke the Christmas news to me. To be completely honest I still believe. One question didn't complete the puzzle though. "Who called me on Christmas Eve?" It was my Uncle Kirk! The one who called me "Crazy Gracie Castleberry" with one of the biggest smiles upon his face. He took minutes out of his day to just keep my hopes alive one more year. Here recently he has been diagnosed with dementia. Which means he couldn't call this year. Which means I won't get to confirm that I've tried my best to be the good person. I won't get to tell him I still believe. Which crushes me because I don't get to tell him that he is the reason I still believe in Christmas. The call that kept my hopes alive every year. Now all I want is to have a phone call where we can just talk like we use to. I love him more than he will ever know. Bad things happen to the best of people. He still gives me hope though. Seeing the smile on his face as he opens a present. When I look at my Aunt Stacey, I see a woman who has been so strong for so long. The way she looks at him with the brightest smile even when things are going the complete opposite as expected. I hope that when I find that special someone I will look at him the same way. It was that one smile, that one call that could change a Christmas. But one thing can make up for any missed call when you get to spend some time with the people you love.
~Gracie
Every year "Santa Claus" AKA Uncle Kirk calls all of our nieces and nephews and extended family. This has been a tradition for the past 15 years. Even the older ones still look forward to this cherished tradition.
But this year was different.......we all knew it would be. As Christmas Eve approached I shed a few tears for the loss of those special moments that we shared each Christmas. I was not the only one that mourned this beloved tradition. My 14 year old niece, Gracie wrote her thoughts about the call from "Santa" in her journal. I was honored when she told me I could share it with you guys. She will never know how much her Uncle Kirk loves and adores her......... His Crazy Gracie Castleberry!
Christmas, you grow up learning of Santa Claus and his crazy adventures on the night of Christmas Eve. One holiday tradition could mean the world to a little brown eyed, black haired girl. Anxiously awaiting the call. The call to confirm the official Christmas list and to tell the big man you have been the best you can be. I didn't realize growing up it could be one of the most precious puzzle pieces I could never receive back. Last year my parents broke the Christmas news to me. To be completely honest I still believe. One question didn't complete the puzzle though. "Who called me on Christmas Eve?" It was my Uncle Kirk! The one who called me "Crazy Gracie Castleberry" with one of the biggest smiles upon his face. He took minutes out of his day to just keep my hopes alive one more year. Here recently he has been diagnosed with dementia. Which means he couldn't call this year. Which means I won't get to confirm that I've tried my best to be the good person. I won't get to tell him I still believe. Which crushes me because I don't get to tell him that he is the reason I still believe in Christmas. The call that kept my hopes alive every year. Now all I want is to have a phone call where we can just talk like we use to. I love him more than he will ever know. Bad things happen to the best of people. He still gives me hope though. Seeing the smile on his face as he opens a present. When I look at my Aunt Stacey, I see a woman who has been so strong for so long. The way she looks at him with the brightest smile even when things are going the complete opposite as expected. I hope that when I find that special someone I will look at him the same way. It was that one smile, that one call that could change a Christmas. But one thing can make up for any missed call when you get to spend some time with the people you love.
~Gracie
Sunday, December 22, 2013
When Do We Open Presents?
Kirk probably asks me at least 5 times a day, "when do we open presents?" After hearing this question over and over I looked a little deeper into his question.........
I don't know about you guys but I am like a kid on Christmas morning. I am positive I get on my kid's nerves! Camera flashing before they open their eyes. This Christmas is going to be bittersweet for our family. It will most likely be the last Christmas Kirk will be aware. I pray God has a different plan, but like I said bittersweet.
My best friend took Kirk Christmas shopping for me. He was so excited! He wrapped his gift to me and put it under the tree. He will walk by the tree and say, "you are going to be so suprised!" I wish I could bottle his excitement and smile!
I can't help but think about God's gift of His Son. The amazing things that happen in our lives, the gift of hope, peace and eternal love. Kirk's question has me thinking, why do I not wake up every morning asking God if I can open the gifts He has for me. They are always right there waiting for me to open.
Today Kirk was watching TV in our room and from the kitchen I can see the outside door to our bedroom. I looked up and the door was open and Kirk was nowhere in sight. Few minutes later I hear him, "Stacey, Stacey come see." I follow him to the garage and he had found all of Drew and Jessica's trophies. He said, "Look I found all of MY trophies!" He told me the story of each trophy...... 28 trophies:) As I have said before we live in his world. I went right along with him............Again I wish I could bottle up his excitement.
Everyday I wake up next to Kirk is a gift. "When do we get to open presents?" Every morning Sweety, every morning.
Merry Christmas from The Russells
I don't know about you guys but I am like a kid on Christmas morning. I am positive I get on my kid's nerves! Camera flashing before they open their eyes. This Christmas is going to be bittersweet for our family. It will most likely be the last Christmas Kirk will be aware. I pray God has a different plan, but like I said bittersweet.
My best friend took Kirk Christmas shopping for me. He was so excited! He wrapped his gift to me and put it under the tree. He will walk by the tree and say, "you are going to be so suprised!" I wish I could bottle his excitement and smile!
I can't help but think about God's gift of His Son. The amazing things that happen in our lives, the gift of hope, peace and eternal love. Kirk's question has me thinking, why do I not wake up every morning asking God if I can open the gifts He has for me. They are always right there waiting for me to open.
Today Kirk was watching TV in our room and from the kitchen I can see the outside door to our bedroom. I looked up and the door was open and Kirk was nowhere in sight. Few minutes later I hear him, "Stacey, Stacey come see." I follow him to the garage and he had found all of Drew and Jessica's trophies. He said, "Look I found all of MY trophies!" He told me the story of each trophy...... 28 trophies:) As I have said before we live in his world. I went right along with him............Again I wish I could bottle up his excitement.
Everyday I wake up next to Kirk is a gift. "When do we get to open presents?" Every morning Sweety, every morning.
Merry Christmas from The Russells
Wednesday, December 18, 2013
Love is......
1 Corinthians 13:4-7
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
God gave me this scripture this morning. He knows my struggles. I thought he was reminding me of the love he blessed Kirk and I with....... after reading each word I began to second guess myself. Is he scolding me? See, I don't always have the patience of JOB. LOL! I get frustrated and overwhelmed! I have my "girl, you need to hide your crazy moments". I thought, "OK God I get it I need to do better", but again He knows my struggles. He is reminding me of His love for me this morning.
We are coming up on the 8th month of living with Alzheimer's. I guess we can call it what it is. I had not read anything on Alzheimer's until yesterday. I think I was not ready to give this disease that disrupted our lives this name. I read this disease has seven stages to monitor the progression by. Kirk is somewhere between stages 5 and 6. I have scheduled for an Alzheimer counselor/specialist to come visit with me and the kids on Thursday. Hoping to learn some tips, what to expect, etc.
Yesterday I took Kirk shopping. He and Jessica have a memory that I wanted to preserve for Parker. "The Glove" When Jessica was little they hung out at the Old ballpark in Arlington. They would watch the Ranger's practice. This was back in the late 80's. Being the cutie pie she was:) she caught the eye of the entire team with her tiny baseball glove in hand. One of the players scooped her up in his arms and signed her glove leading the way for the rest of the team. I tell this story like I was there. I have heard Kirk tell it a thousand times and every time he beams with excitement. Facebook pics tonight of how we preserved this memory for Parker. This kid has already stolen his Pops' heart!
I am so blessed to be given the opportunity to stay home with Kirk during this time. I treasure each day. We curl up on the couch and take naps, we watch movies, we take walks, etc. There are not a lot of deep conversations going on those are few and far between, but a touch, a smile, a kiss and I love you are the most treasured these days. He is so precious, I can't imagine my life without him.
Love always protects, it always trusts, it always gives hope, it always perseveres........ My prayer is that I am staying true to this scripture for Kirk. I will protect him, I will trust God, I will always have hope, I will persevere now and the hard days to come.
God gave me this scripture this morning. He knows my struggles. I thought he was reminding me of the love he blessed Kirk and I with....... after reading each word I began to second guess myself. Is he scolding me? See, I don't always have the patience of JOB. LOL! I get frustrated and overwhelmed! I have my "girl, you need to hide your crazy moments". I thought, "OK God I get it I need to do better", but again He knows my struggles. He is reminding me of His love for me this morning.
We are coming up on the 8th month of living with Alzheimer's. I guess we can call it what it is. I had not read anything on Alzheimer's until yesterday. I think I was not ready to give this disease that disrupted our lives this name. I read this disease has seven stages to monitor the progression by. Kirk is somewhere between stages 5 and 6. I have scheduled for an Alzheimer counselor/specialist to come visit with me and the kids on Thursday. Hoping to learn some tips, what to expect, etc.
Yesterday I took Kirk shopping. He and Jessica have a memory that I wanted to preserve for Parker. "The Glove" When Jessica was little they hung out at the Old ballpark in Arlington. They would watch the Ranger's practice. This was back in the late 80's. Being the cutie pie she was:) she caught the eye of the entire team with her tiny baseball glove in hand. One of the players scooped her up in his arms and signed her glove leading the way for the rest of the team. I tell this story like I was there. I have heard Kirk tell it a thousand times and every time he beams with excitement. Facebook pics tonight of how we preserved this memory for Parker. This kid has already stolen his Pops' heart!
I am so blessed to be given the opportunity to stay home with Kirk during this time. I treasure each day. We curl up on the couch and take naps, we watch movies, we take walks, etc. There are not a lot of deep conversations going on those are few and far between, but a touch, a smile, a kiss and I love you are the most treasured these days. He is so precious, I can't imagine my life without him.
Love always protects, it always trusts, it always gives hope, it always perseveres........ My prayer is that I am staying true to this scripture for Kirk. I will protect him, I will trust God, I will always have hope, I will persevere now and the hard days to come.
Sunday, December 15, 2013
Not mad, just determined.......
We have settled back in from our trip. Kirk seems to be relaxing more. It's very difficult for him to get out of a routine, it causes him to be agitated and nervous. We are finding a rhythm.
Tonight I was looking at all the pictures from our trip, I had forgotten about a video I took of Kirk and the kids. I'll post it to Fb. Look at his smile and hear his laugh! On this trip we sang at the tops of our lungs, we laughed until our guts hurt, we played in knee deep snow, we played some lethal Xbox connect, we hugged, and we cried. We lived and had a blast!
I walked away from this trip with a refreshed attitude. I had taken Kirk off of artificial sweeteners, cut him back on sugars and soft drinks , etc. Basically taken all the enjoyable stuff away. I received an email from his doctor while we were on the road....... PET scan results were in. Alzheimer's has won the Dx. Although I am not convinced that's it, that is the name it shall bear for now. Anyway back to my refreshed attitude:) I had to stop and think, am I seriously worried about his caffeine, sugar and artificial sweetener intake? Needless to say Kirk Russell gets all the Coke, caffeine, chocolate he wants. I want him to love life and savor every bit! We are not going to live in a bubble or let it dictate our every step. I will watch and wait for every glimpse of Kirk I get. I will endure the Alzheimer's with him and fight for him. We probably won't win, but that's OK. But Kirk is going to know that I stood up to this disease and we endured it together! For every step backwards this disease causes us to take, I am kicking and screaming to get it back. If tonight I sound ticked off, it's just determination. I am determined to rely on God for strength. I am determined to find laughter among my tears.
I want to dedicate this blog to Haley and her mom Hollie and all the friends and families they left behind........don't let their lives be forgotten.....choose to live in every moment, love big those who are around you and always forgive everything. Honor them through your lives, through the choices you make. Praying God's peace over each of you.
Tonight I was looking at all the pictures from our trip, I had forgotten about a video I took of Kirk and the kids. I'll post it to Fb. Look at his smile and hear his laugh! On this trip we sang at the tops of our lungs, we laughed until our guts hurt, we played in knee deep snow, we played some lethal Xbox connect, we hugged, and we cried. We lived and had a blast!
I walked away from this trip with a refreshed attitude. I had taken Kirk off of artificial sweeteners, cut him back on sugars and soft drinks , etc. Basically taken all the enjoyable stuff away. I received an email from his doctor while we were on the road....... PET scan results were in. Alzheimer's has won the Dx. Although I am not convinced that's it, that is the name it shall bear for now. Anyway back to my refreshed attitude:) I had to stop and think, am I seriously worried about his caffeine, sugar and artificial sweetener intake? Needless to say Kirk Russell gets all the Coke, caffeine, chocolate he wants. I want him to love life and savor every bit! We are not going to live in a bubble or let it dictate our every step. I will watch and wait for every glimpse of Kirk I get. I will endure the Alzheimer's with him and fight for him. We probably won't win, but that's OK. But Kirk is going to know that I stood up to this disease and we endured it together! For every step backwards this disease causes us to take, I am kicking and screaming to get it back. If tonight I sound ticked off, it's just determination. I am determined to rely on God for strength. I am determined to find laughter among my tears.
I want to dedicate this blog to Haley and her mom Hollie and all the friends and families they left behind........don't let their lives be forgotten.....choose to live in every moment, love big those who are around you and always forgive everything. Honor them through your lives, through the choices you make. Praying God's peace over each of you.
Monday, December 9, 2013
Plans
My plan was to blog every night! I wanted everything fresh when I tapped the keys on my Mac........
That didn't happen.
My plan was to take my family to the Grand Canyon. Kirk and I always wanted to visit this amazing place! We have heard so much about how overwhelmingly beautiful it is.
That didn't happen.
"My plans"...... to hear those two words come out of my mouth make me laugh now! We spend our childhood years planning for our teenage years. We spend our teenage years planning for our college (freedom from mom and dad) years. We spend our college years planning for adulthood( the real world). We spend adulthood planning for our golden years. I wonder what would happen if we stopped planning and let God lead us. Could we really do this? I am sure some could, but I would have to bet the majority could not.
God showed me a thing or two about plans on this trip. See "plans" are once again, me taking control of what I want the outcome to look like. I forget that I never had control to begin with. From the beginning God had a different plan for this trip, he had a different outcome in mind. Graciously I stepped aside and did not grumble or grunt when "my plans" turned into "His plans".
HIS plans allowed our kids to play with their dad in knee deep snow, throw snowballs until their hands were frozen. HIS plans gave us uninterrupted family time. How many of us get that?
I have so much to share, but tonight I am certain that God wants me to share the importance of HIS plan not our own agenda. I left on this journey with my family with a frazzled spirit. Today I return with a peaceful spirit, knowing that I am not nor was I ever in control of my life. Spirit lead! Spirit filled! Thank You God for the evidence of your love when you know I need it!
That didn't happen.
My plan was to take my family to the Grand Canyon. Kirk and I always wanted to visit this amazing place! We have heard so much about how overwhelmingly beautiful it is.
That didn't happen.
"My plans"...... to hear those two words come out of my mouth make me laugh now! We spend our childhood years planning for our teenage years. We spend our teenage years planning for our college (freedom from mom and dad) years. We spend our college years planning for adulthood( the real world). We spend adulthood planning for our golden years. I wonder what would happen if we stopped planning and let God lead us. Could we really do this? I am sure some could, but I would have to bet the majority could not.
God showed me a thing or two about plans on this trip. See "plans" are once again, me taking control of what I want the outcome to look like. I forget that I never had control to begin with. From the beginning God had a different plan for this trip, he had a different outcome in mind. Graciously I stepped aside and did not grumble or grunt when "my plans" turned into "His plans".
HIS plans allowed our kids to play with their dad in knee deep snow, throw snowballs until their hands were frozen. HIS plans gave us uninterrupted family time. How many of us get that?
I have so much to share, but tonight I am certain that God wants me to share the importance of HIS plan not our own agenda. I left on this journey with my family with a frazzled spirit. Today I return with a peaceful spirit, knowing that I am not nor was I ever in control of my life. Spirit lead! Spirit filled! Thank You God for the evidence of your love when you know I need it!
Saturday, November 30, 2013
Thanksgiving Blessings are just everyday blessings we just take for granted.........
We made our first road trip since Kirk's rapid decline. (Since our last trip to Houston, more confusion has set in). We made one pit stop! Those that have been around Kirk lately know how huge that is! Lol! His mom and stepdad live in the same house Kirk grew up in. He remembered how to get there once we were in Abilene.( He told me where to turn, stop, etc....) Once we were in the house that's where his memory grew dim. I thought for sure this would jog his memory or he would at least remember which room was his. It only reminded me of how much I hate this disease!
God showed our family his grace this weekend........ Kirk's family is quite blended. All the brothers were together this weekend under one roof. No one cared about the past or how we all became a family. What mattered was the fact that WE were just that, FAMILY. We gathered to give thanks for our blessings that in the past we all have taken for granted. Today we were reminded of just how precious those blessings really are! As we stood there holding hands and heads bowed in prayer, I lifted my head and took a peek. I saw brothers, step-brothers and half-brothers. I saw sisters-n-law, cousins, sisters, moms, dads, step-moms and step-dads, husbands and wives. I realized at that moment that through the years God has shown his Grace and Glory and planned for this special day. He took us all on our own personal journeys to get us here to realize his grace is sufficient. How awesome! How amazing! He loves us so much!!!!!!
Kirk's brother, Keith took him hunting Friday morning. He was so excited! You would have thought it was his first hunt ever! I love to see him so excited! He loves the outdoors and it seems to energize him.
As we drive home, I switch my brain to planning mode. I pick up the RV this morning and load up for 10 days of "Griswold Family Fun" ! Everyone is excited! I reflect this morning on the meaning of this trip. It's a bit overwhelming! In my heart I take this sweet community with us! I'm not going to focus on the prognosis of Kirk's disease, instead we are going to "dance like no one is watching" !
I posted a quote that talked about people with dementia still have stories to tell, still have character, they are all individuals. Kirk reminded me of this last night. He asked if he made me crazy sometimes. I stopped and thought about what I have done to make him think that. I try to make life as easy as possible for Kirk. This adds alot of extras on me and can be stressful. I realized that I need to be more patient and listen to him more. My sweetheart is still in there, he still needs to feel important and needed. A lesson learned!
So last night he took the trash out! ;)
God showed our family his grace this weekend........ Kirk's family is quite blended. All the brothers were together this weekend under one roof. No one cared about the past or how we all became a family. What mattered was the fact that WE were just that, FAMILY. We gathered to give thanks for our blessings that in the past we all have taken for granted. Today we were reminded of just how precious those blessings really are! As we stood there holding hands and heads bowed in prayer, I lifted my head and took a peek. I saw brothers, step-brothers and half-brothers. I saw sisters-n-law, cousins, sisters, moms, dads, step-moms and step-dads, husbands and wives. I realized at that moment that through the years God has shown his Grace and Glory and planned for this special day. He took us all on our own personal journeys to get us here to realize his grace is sufficient. How awesome! How amazing! He loves us so much!!!!!!
Kirk's brother, Keith took him hunting Friday morning. He was so excited! You would have thought it was his first hunt ever! I love to see him so excited! He loves the outdoors and it seems to energize him.
As we drive home, I switch my brain to planning mode. I pick up the RV this morning and load up for 10 days of "Griswold Family Fun" ! Everyone is excited! I reflect this morning on the meaning of this trip. It's a bit overwhelming! In my heart I take this sweet community with us! I'm not going to focus on the prognosis of Kirk's disease, instead we are going to "dance like no one is watching" !
I posted a quote that talked about people with dementia still have stories to tell, still have character, they are all individuals. Kirk reminded me of this last night. He asked if he made me crazy sometimes. I stopped and thought about what I have done to make him think that. I try to make life as easy as possible for Kirk. This adds alot of extras on me and can be stressful. I realized that I need to be more patient and listen to him more. My sweetheart is still in there, he still needs to feel important and needed. A lesson learned!
So last night he took the trash out! ;)
Friday, November 22, 2013
At a crossroad......
So much has taken place since my last blog..........
I heard this quote somewhere before....... "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." This is for my dad, thank you daddy for standing with me in the fire.
This week's events confirmed that it is time to take a step back from work and be with Kirk. I can already feel a sense of peace and weight lifted. (That could just be the control freak in me:) ......nobody can take care of him like I can.)
I sit across from him in the evenings and watch him close his eyes, he says he is dreaming. In the most precious, patient and soothing voice he tells Parker(our soon to be born grandson) how to catch a fish, catch a baseball and takes him to the zoo. He cradles his arms as if he is holding a baby and strokes his head. He tells me he is dreaming of Pops. After watching him I understand what he is talking about. He is dreaming of Parker calling him Pops. He is dreaming about being a Pops. He will most certainly be the best Pops ever!
Sleep is overrated! It's funny what your body will adjust to. I am definitely overdue a good night's sleep. I should be sleeping when he is sleeping, but I steal those moments while he is sleeping and watch him, caress his face, play with his ears (that's his favorite). I hit a brick wall Tuesday night and I'm so thankful my dad was here. Kirk had a very rough weekend and I was beginning to feel it. I have tried extremely hard to keep my emotions at bay while I am at school. My students are so precious to me and their little hearts are so compassionate towards my family. I guess I had been a little grouchy that morning. :) When I returned from lunch I found a sweet little note from a student. " Please cheer up, we love you Mrs. Russell", if she only knew how bad I needed that reminder.
Dogs are so smart! I have watched our Golden, Malaikah with Kirk. She does not leave his side. If he gets up to go to the bathroom she is right behind him. I have also paid close attention to her when he has bad days, where he barely remembers anything. She wakes up whining in the middle of the night or is very anxious all day. M ....loves him so much! She knows........
This week my mind has wondered off a lot....... I find myself saying out loud, "is this really going to happen? Am I really going to lose him?" Each time something happens with Kirk I feel as if I have lost another piece of him that I can't get back. Those times keep coming too fast.
We have come to a crossroad........ over the next two weeks I pray God shows me the next step to take.
I heard this quote somewhere before....... "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." This is for my dad, thank you daddy for standing with me in the fire.
This week's events confirmed that it is time to take a step back from work and be with Kirk. I can already feel a sense of peace and weight lifted. (That could just be the control freak in me:) ......nobody can take care of him like I can.)
I sit across from him in the evenings and watch him close his eyes, he says he is dreaming. In the most precious, patient and soothing voice he tells Parker(our soon to be born grandson) how to catch a fish, catch a baseball and takes him to the zoo. He cradles his arms as if he is holding a baby and strokes his head. He tells me he is dreaming of Pops. After watching him I understand what he is talking about. He is dreaming of Parker calling him Pops. He is dreaming about being a Pops. He will most certainly be the best Pops ever!
Sleep is overrated! It's funny what your body will adjust to. I am definitely overdue a good night's sleep. I should be sleeping when he is sleeping, but I steal those moments while he is sleeping and watch him, caress his face, play with his ears (that's his favorite). I hit a brick wall Tuesday night and I'm so thankful my dad was here. Kirk had a very rough weekend and I was beginning to feel it. I have tried extremely hard to keep my emotions at bay while I am at school. My students are so precious to me and their little hearts are so compassionate towards my family. I guess I had been a little grouchy that morning. :) When I returned from lunch I found a sweet little note from a student. " Please cheer up, we love you Mrs. Russell", if she only knew how bad I needed that reminder.
Dogs are so smart! I have watched our Golden, Malaikah with Kirk. She does not leave his side. If he gets up to go to the bathroom she is right behind him. I have also paid close attention to her when he has bad days, where he barely remembers anything. She wakes up whining in the middle of the night or is very anxious all day. M ....loves him so much! She knows........
This week my mind has wondered off a lot....... I find myself saying out loud, "is this really going to happen? Am I really going to lose him?" Each time something happens with Kirk I feel as if I have lost another piece of him that I can't get back. Those times keep coming too fast.
We have come to a crossroad........ over the next two weeks I pray God shows me the next step to take.
Saturday, November 16, 2013
Riding with the windows rolled down..................
"I like Big Butts and I cannot lie, you other brothers can't deny"..........This is the song Kirk and I shouted to each other tonight....... We were being silly. Come on you know this song too:)!
You are singing it now, right?!
I look back at this past week and sigh.........a lot to think about. I am reminded by my son that God did not bring us on this journey with plans to leave us on the side of the road stranded. He is going to make sure we get to our destination safely. (this kid amazes me!)
We all handle stress and bad news differently therefore we should not judge others reactions if it is not what we expect. I found myself in this situation........Opening up about how much Kirk has declined to his children...... I failed by trying to protect their hearts from breaking. I still see that 7 year old little boy and 10 year old little girl, but that's not reality. Reality is Kirk is declining and we are all needed in the trenches.
I sit and watch him all the time. I am memorizing his face, his expressions, everything. I ask him every night "Who am I and what am I to you?" and he answers, "You are Stacey and you are my beautiful wife". (he's still a smooth talker:)
He enjoys the wind in his face..... when I am driving down the road he always rolls the window down and holds his head out of the window. He says he feels free.
Monday, November 11, 2013
IT........
What are you suppose to do when you do not have anymore "BIG GIRL" panties to put on? I think if I hear that expression one more time I shall scream..........
Today was different, when I came home he stared off in space a lot....... of course he said he was good. "I'm always good". It's almost as if he knows what is ahead of him....
It has been almost a month since we had the PET Scan. Results are in, but the doctor wants to review the images herself. Today I received news that we may be looking at alzheimer's, instead of frontotemporial dementia. I'm not really sure what to feel or say about this news. I don't think I feel any different because IT has a new name.
Selfishly I'm saddened today by the role I have to take.......... I miss him!
Today was different, when I came home he stared off in space a lot....... of course he said he was good. "I'm always good". It's almost as if he knows what is ahead of him....
It has been almost a month since we had the PET Scan. Results are in, but the doctor wants to review the images herself. Today I received news that we may be looking at alzheimer's, instead of frontotemporial dementia. I'm not really sure what to feel or say about this news. I don't think I feel any different because IT has a new name.
Selfishly I'm saddened today by the role I have to take.......... I miss him!
Saturday, November 9, 2013
You can Laugh about it or Cry ........We prefer Laughter!
9:30AM:
Kirk: "Honey, did you know I held my breath for 4 hours today?" Me: "Are you sure?"........Him: "Yes I did, I'm pretty awesome?" Me: "Yes you are, Sweety"
Him: "Last night I won 100 million dollars on The Chase!" Me: "What?" Him: "Yea, I'm going to build hunting cabins for you and the boys and all our friends?" Me: "Sweet!, You are always thinking about others."
These are the kinds of conversations we have lately, the line between what is real and what is not real seems to be thinning. I wonder what He thinks about all day? Where his mind goes. I am so thankful for Mrs. Donna. She has quickly become apart of our family. Kirk and Mrs. Donna play cards, go outside and Kirk's favorite thing about Mrs. Donna is she cooks!!!!!:) She keeps him occupied throughout the day.
Kirk: "Can I climb up in the attic today?" Me: "Why?" Kirk: "I want to get my hunting stuff" Bailey pipes in: "I'll get it down!" Kirk:" I can do it, I can climb a ladder!" In the beginning Kirk realized he was unable to do a lot of things, lately he has become unaware of his inabilities. He is a bit of a daredevil which makes me nervous. Everyday we have a moment of silence in our classroom. I take this opportunity to pray for my students and pray for the Lord to protect Kirk from harm.
Kirk: "Can I fly?" Me: " Well, What cha thinkin'?" Kirk: "Do you remember our honeymoon?" Me: "Yes" Kirk: "I want to do that again, that was fun!"
Kirk: "I can do a magic trick, wanna see it?" Me and Bailey: "Sure" Kirk puts a toothpick in the end of a towel and breaks it. Then hands Bailey the towel and says, "now get it out" Bailey takes out the toothpick that is now in two pieces. Kirk: "Check that out!"
These are the times I choose to enjoy with laughter............
10:11PM
We ventured out tonight with kids in tow. I decided this afternoon that we were going to enjoy dinner out ( thanks to The Yorks) and put up the Christmas tree! Yes I know it's a bit early but we are going to enjoy life, heck I might leave it up all year!!!!!!
I was reminded at dinner tonight how much I despise this disease. Everything about it ticks me off! I often have to take the role of caregiver instead of wife. It's a role I gracefully slip into especially in the evenings. See my sweetheart suffers from sundowners as well. When the sun goes down the dementia seems to reek havoc. One of the characteristics of the disease is lack of impulse control. Kirk looses that control with food. He will eat until I make him stop. It's almost like he gets in a zone and constantly shovels it in. For a child ....I guess that is normal:/ but for a 52 year old man......not so much. I constantly had to tell him to slow down and to use his napkin not his shirt. I felt as if I was talking down to him.....ugggh! I hate it! He is my husband for crying out loud! I would never belittle him. The worse part is I had to say these things in front of the kids. They are getting where they understand more and lovingly help their dad. Did I tell you how much I hate this disease?
These are the times I choose to cry............
Kirk: "Honey, did you know I held my breath for 4 hours today?" Me: "Are you sure?"........Him: "Yes I did, I'm pretty awesome?" Me: "Yes you are, Sweety"
Him: "Last night I won 100 million dollars on The Chase!" Me: "What?" Him: "Yea, I'm going to build hunting cabins for you and the boys and all our friends?" Me: "Sweet!, You are always thinking about others."
These are the kinds of conversations we have lately, the line between what is real and what is not real seems to be thinning. I wonder what He thinks about all day? Where his mind goes. I am so thankful for Mrs. Donna. She has quickly become apart of our family. Kirk and Mrs. Donna play cards, go outside and Kirk's favorite thing about Mrs. Donna is she cooks!!!!!:) She keeps him occupied throughout the day.
Kirk: "Can I climb up in the attic today?" Me: "Why?" Kirk: "I want to get my hunting stuff" Bailey pipes in: "I'll get it down!" Kirk:" I can do it, I can climb a ladder!" In the beginning Kirk realized he was unable to do a lot of things, lately he has become unaware of his inabilities. He is a bit of a daredevil which makes me nervous. Everyday we have a moment of silence in our classroom. I take this opportunity to pray for my students and pray for the Lord to protect Kirk from harm.
Kirk: "Can I fly?" Me: " Well, What cha thinkin'?" Kirk: "Do you remember our honeymoon?" Me: "Yes" Kirk: "I want to do that again, that was fun!"
Kirk: "I can do a magic trick, wanna see it?" Me and Bailey: "Sure" Kirk puts a toothpick in the end of a towel and breaks it. Then hands Bailey the towel and says, "now get it out" Bailey takes out the toothpick that is now in two pieces. Kirk: "Check that out!"
These are the times I choose to enjoy with laughter............
10:11PM
We ventured out tonight with kids in tow. I decided this afternoon that we were going to enjoy dinner out ( thanks to The Yorks) and put up the Christmas tree! Yes I know it's a bit early but we are going to enjoy life, heck I might leave it up all year!!!!!!
I was reminded at dinner tonight how much I despise this disease. Everything about it ticks me off! I often have to take the role of caregiver instead of wife. It's a role I gracefully slip into especially in the evenings. See my sweetheart suffers from sundowners as well. When the sun goes down the dementia seems to reek havoc. One of the characteristics of the disease is lack of impulse control. Kirk looses that control with food. He will eat until I make him stop. It's almost like he gets in a zone and constantly shovels it in. For a child ....I guess that is normal:/ but for a 52 year old man......not so much. I constantly had to tell him to slow down and to use his napkin not his shirt. I felt as if I was talking down to him.....ugggh! I hate it! He is my husband for crying out loud! I would never belittle him. The worse part is I had to say these things in front of the kids. They are getting where they understand more and lovingly help their dad. Did I tell you how much I hate this disease?
These are the times I choose to cry............
Thursday, November 7, 2013
So Much To Do........So Much To Say........So Little Time.....
Kirk and I have joked and laughed about growing old together and because he is 10 years my senior we have always joked about me wiping food off his chin or me giving him a bath and all the other daily tasks that go on in the bathroom. What we joked and laughed about is now a reality to us both. ......... This past September Kirk was diagnosed with Frontotemporal Dementia (FTD) with Parkinson's -17 at the age of 52. It's a nasty little disease that robs its victims of their memory, motor skills, cognitive and personality. Well here we are 15 + years of marriage, a blended/adoptive family and grandparents to be 6 months into this disease. There is one thing and mind you one thing only that I can say good about this thing is that, My love is not aware of the damage, the randomness and the sadness. Instead he is "HAPPY, HAPPY, HAPPY" these are Kirk's words by way of Phil Robertson of Duck Dynasty. We, me and the kids, are learning to take life one day at a time. We don't plan too far ahead these days. My hope for this blogging thing is to get our thoughts, feelings, our tears and fears, our laughs and our joys, our lessons, our journey and our walk with God, tucked away for someone else to find peace through the words God placed on my lips to share.
Sometime in September 2013......
This was the first of several trips to Houston to see Kirk's doctor, with MRI in hand we would get our first glimpse at what was taking my sweet husband from me. I remember laying in bed that night after we got the diagnosis of FTD. I laid there gasping for air as I cried. It felt like an elephant was sitting on my chest! I held him and cried until I saw the morning light!
This is where God began showing me some things...... pay close attention. I started noticing that I didn't cry very often or get sad. We actually laugh way more! I get overwhelmed a lot, but not sad. Of course after a month of this I thought "OK, I'm either in shock or I'm growing hardhearted......I should be balling, right?" God began showing me what was taking place in our life was not about Kirk and I, it was way bigger. See, Kirk is going to be healed! One day he will remember and he will be able to pick out his own clothes and drive a car again! God told me, " Stacey Do Not forget this is not Kirk's home he is just passing through!" God will heal Kirk in His time, not mine.
The Fruits of the Spirit have all been easy to understand except for one.......long suffering. This does not sound as wonderful as the other Fruits. Long suffering, who wants that? It sounds painful. Give me love or peace...... No! God is showing me long suffering. My friend Jennifer and I have talked about what long suffering looks like and why that would even be considered a Fruit of the Spirit.
God is showing me what that looks like.
It's not always fun, but it is beautiful to witness! Mind you I realize I am in the novice stage. Go back to the overwhelmed comment......God knows that too! My blog tonight may seem a bit scattered but God is weaving it all together. The disease, standing strong on God's promises, long suffering, the big picture. That big picture is bringing others to Christ through a precious, intimate relationship, realness, brokenness, joy in suffering. Living out loud, Christ's love! Each person that has called, text, visited, prayed for us, fed us with food, fed us financially has been this very thing I am talking about. The BIG PICTURE! It's not about the Russells.........It's about each one of you! Your life, your intimate relationship, your realness, your brokenness, your joy in suffering. What does that look like? Are you standing on God's promises? I'm not only standing on them, I cling to them every day!
Sometime in September 2013......
This was the first of several trips to Houston to see Kirk's doctor, with MRI in hand we would get our first glimpse at what was taking my sweet husband from me. I remember laying in bed that night after we got the diagnosis of FTD. I laid there gasping for air as I cried. It felt like an elephant was sitting on my chest! I held him and cried until I saw the morning light!
This is where God began showing me some things...... pay close attention. I started noticing that I didn't cry very often or get sad. We actually laugh way more! I get overwhelmed a lot, but not sad. Of course after a month of this I thought "OK, I'm either in shock or I'm growing hardhearted......I should be balling, right?" God began showing me what was taking place in our life was not about Kirk and I, it was way bigger. See, Kirk is going to be healed! One day he will remember and he will be able to pick out his own clothes and drive a car again! God told me, " Stacey Do Not forget this is not Kirk's home he is just passing through!" God will heal Kirk in His time, not mine.
The Fruits of the Spirit have all been easy to understand except for one.......long suffering. This does not sound as wonderful as the other Fruits. Long suffering, who wants that? It sounds painful. Give me love or peace...... No! God is showing me long suffering. My friend Jennifer and I have talked about what long suffering looks like and why that would even be considered a Fruit of the Spirit.
God is showing me what that looks like.
It's not always fun, but it is beautiful to witness! Mind you I realize I am in the novice stage. Go back to the overwhelmed comment......God knows that too! My blog tonight may seem a bit scattered but God is weaving it all together. The disease, standing strong on God's promises, long suffering, the big picture. That big picture is bringing others to Christ through a precious, intimate relationship, realness, brokenness, joy in suffering. Living out loud, Christ's love! Each person that has called, text, visited, prayed for us, fed us with food, fed us financially has been this very thing I am talking about. The BIG PICTURE! It's not about the Russells.........It's about each one of you! Your life, your intimate relationship, your realness, your brokenness, your joy in suffering. What does that look like? Are you standing on God's promises? I'm not only standing on them, I cling to them every day!
Sunday, August 25, 2013
News that rocked my world.....
Three months ago my husband began having problems with his speech. I would finish his sentences,( I guess when you have been married for 15+ years you tend to do that) and help him find the right words. I also noticed his memory, mainly his short term memory decrease. He would ask me the same questions over and over, not realizing he had already asked. It was not until we left for Florida (to marry our oldest off) that the realization that this was not a fluke thing set in. My beloved's coordination and balance was off. He began to shuffle when he walked. We decided on this trip that it was time to see a doctor. Let me back up a little, before we left for Florida my husband switched careers. He had been in Healthcare administration for over 25 years. He was ready for a change, so on to bigger and brighter horizons. He began working for a great insurance company. He had been there a month before he became sick. We got back from our trip and made our doctors appointment.....2 weeks away. During these two weeks my sweety's health declined. He wrecked his car and in my gut I knew it was due to whatever was going on with him. It interrupted ability to work, he could not perform his job. Now let me stop and paint you a picture of the man I married. Being able to provide for his family is part of who he is. We mean everything to him. He puts his family first. You kind of get the picture. If he can't perform his job in order to provide for his family, well that's where we are right now. We are dealing with those feelings, well I am trying to help him deal with those feelings. For a man that prides himself on being a provider this has to be pretty devastating. The two weeks pass slowly,but we got in to see the doctor. Only to be sent to another doctor three weeks later. Yes, my love is still declining. But let me stop and share how God walked me through this one. We get to the neurologist's office (2nd doctor) and I walk in and see a friend from high school working the front desk. Such a sweet spirit! Thank you God for giving me a familiar face to comfort me. The weeks ahead of us would hold 2 weeks off and on of hospital stays, a failed visit to a specialist, a stint in the ER and a very anticipated doctor visit to Houston.
I realize I started this blog thing a little late in the game. I feel like I need to catch everyone up on the situation. My reason for even starting this blog is therapeutic. If you stumble upon my blog I hope by the time I get it caught up I am able to share this journey that God has put my family on and allow for God's grace and mercy to shine! There is so much more to share, but tomorrow will come early for our household! School starts!
I realize I started this blog thing a little late in the game. I feel like I need to catch everyone up on the situation. My reason for even starting this blog is therapeutic. If you stumble upon my blog I hope by the time I get it caught up I am able to share this journey that God has put my family on and allow for God's grace and mercy to shine! There is so much more to share, but tomorrow will come early for our household! School starts!
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