Saturday, July 12, 2014

Permission.........

Giving myself permission to feel emotions, live life and be happy is tough.  As I travel the road of a widow I am learning to own my journey as MY journey. To others it may look odd or it may seem I choose the most difficult road, but it's my journey. It is not meant for others to judge or even understand. 

Today I wake up thinking about Kirk. I think about the God winks I receive on a daily basis.  Kirk is always letting me know he is walking with me, especially when I am doubting myself or can't seem to take another step. I hear him say....."suck it up, babe I know you can do this" He use to tell me all the time "When I'm not around you can do anything you set your mind to, (change the oil in the car, move the trampoline to mow, move heavy boxes) then when I get home you act like you're helpless" lol!!!!   He is right I can do it, but I loved how he took care of me.  He will always be looking out for me. This I know! 

My sister told me not too long ago that my girls were going to keep me pushing forward. She was so right! I wake up these days because of them! Jess and Drew have lives of their own...... Bailey begins his own life journey this fall.  God brought these two girls to Kirk and I for so many reasons.  Healing power in their life and mine.

Today I feel peace like no other, it's so freeing to let go of the anger.  Thank you sweetheart for walking me through this journey and giving me strength to give myself permission to live again. I will forever listen to the music in my soul that YOU put there.


Sunday, June 29, 2014

New Beginnings


Wow! Feels weird blogging again. So many reasons why I stopped. Sadness, anger, distrust, rebellion..........I could go on and on.  I have actually been keeping a journal, but couldn't bring myself to blog about it. Our loss of Kirk sent me to a dark place of anger and confusion.  I stopped my devotionals, stopped reading my bible, stopped praying. I was mad!  I'm still angry at times, but I'm opening up. God's grace once again. He loves me so much!

It's been three months and yet it feels like he's been gone so much longer.  It's hard for others to understand that statement I'm sure.  Last week we received the final autopsy report. Sporadic Creutzfeldt Jacobs Disease. sCJD.  It is unknown how he got this disease. We will never know. We do know it is not hereditary and for that we PRAISE God. I'm finding my way slowly, trying to stay focused on my kids and my sweet Parker (aka the perfect grandson).  I ride the wave of emotions and they are some crazy waves. I'm thankful for the continued prayers, they have been much needed. 
 I want to slow down, dive back into God's Word, find forgiveness and find a new normal. A New Beginning. One that God shows me, not one that I begin. I will continue to blog as time allows. I'm getting Bailey ready for college in the Fall. That's a whole other prayer request! He's been my rock! I'm so proud of him and he is going to do great things! 

My past is my past and my future is my future. Today, I'm thankful for every moment of love I'm fortunate enough to embrace in the present. I take everything I've learned, every ache of my heart, and every tear in my soul and apply it to my life for every day of my future.

I've chosen to live, laugh and love again.

Sunday, February 16, 2014

I Will Forever.......

It's been so long since I sat down and blogged. Part of that disconnecting I'm so good at:)............

These days before me are game changers. We should meet our hospice nurse next week and learn what to expect in the months to come.  As we enter this phase of the disease I find myself getting so mad at God..........that in itself truly breaks my heart. I know I shouldn't be angry at Him, but I know He is the only one that can make this disease go away. I miss Kirk with every ounce of my being. I'm sorry,but in this blog you may have a hard time finding my words of strength.  My heart is breaking as the love of my life slowly says goodbye.

Today at church we read the Love chapter, One of mine and Kirk's favorites.......

One of the longest definitions of love can be found in I Corinthians 13: 1-13. In today's world love has such a twisted meaning. A love that brings you instant gratification. The love in the bible offers another option. It took me many years to understand how beautiful that love is. It offers patience, it offers kindness, it offers forgiveness, it offers hope. Anything else is counterfeit.

I am so thankful that God let me experience that love with Kirk. I will forever listen to the love song that God sings in my heart. I love you Sweetheart.............

Monday, January 27, 2014

Am I OK?


I had to ask Brittany the other night If I was OK. I think I threw her for a loop, because if I am asking that question then I am probably not OK. Right?

I knew that I had not cried in awhile and that was starting to bother me. I felt detached and numb. I talked it out with her, cause that's just what we do. I talk, she listens. As Kirk declines I have to become more of a caregiver, plus do all I can to leave some of me left for my children. Which in itself is becoming a struggle.  So what I have discovered is that I am going into survival mode during those times. I block off my emotions, detached and face the task at hand head on. Is that healthy? I have no idea. Maybe I will give it the name "caregiver blitz".

We are coming into our 4th month of his 6 month prognosis. I continue to see a decline, but I'm praying believing for more time.

Parker will be here in 9 days. I made Kirk a "Countdown to Parker". Every day he marks it off. He will say "One more day till I am a Pops!" I absolutely cannot wait for these two guys to meet.


This disease is so mysterious. To me, anything that involves the brain is complex, mysterious, but very interesting.  I have had people mention different takes on Kirk's illness. I have been doing my own research. I have found that individuals that would have had Alzheimer's later on in their older age, if they have a trauma in their life it can trigger something in their brain to cause the disease to show itself early and rapidly. Three years ago Kirk had all of his teeth pulled at one visit and had dentures put in. For a man that is petrified of the dentist and never went this was a traumatic experience. I have to wonder if this set off what was destined to happen to Kirk later on in life.


One of my amazing friends took Kirk driving on Saturday. Kirk has been quite upset since the doctor took driving away. She took him driving in an open field and gave him the greatest gifts. Freedom and control. Two things he has lost through this horrible disease.  He had a look of determination. To give you a better picture, just imagine a dog hanging it's head out of the window of a moving car. Yep! That describes it! Thanks Jennifer for that gift! I love you!

To answer my own question......Am I OK? Yes, I am. Do I get down and a bit overwhelmed? Of course I do! I'm never alone, My friends, family and God are right there with me, in the trenches. Thank God I AM OK!





Thursday, January 9, 2014

Standing strong.....

A rarer form of the disease, known as young onset, can affect people as young as in their 30's.

Rarer! A rarer form.......that's it!  No one can tell me why it's happening so fast. I was told today the younger the onset, the more rapid the disease is.

My time off with Kirk is coming to an end. I am going back to work Monday, it was a hard decision. It's what I have to do and we will make it work.  This time with him has been priceless! We danced in the middle of the living room, sang at the tops of our lungs (out of key I might add), had precious talks about Parker and most of all just sat in silence holding on to one another for dear life.

The confusion that ravishes his mind is so evil.  At times he walks around the house without purpose, I ask him, "What can I do for you?" He tells me he doesn't know and curls up next to me in a ball and cries.  I try to put reason to it, but I'm unsuccessful. I stroke his face, caress his head and rock him struggling to hold back my own tears. I only want him to see me smile.... no tears!

I have put off going to the Alzheimer's Alliance.  In my mind if I walked through those doors it made it factual. My husband is 52 with Alzheimer's.  I made it through the doors today. I was met with a warm fuzzy. Not what I was expecting, actually I had no expectations because I didn't even want to be there. I will be back.

When you walk in our home these days you will find a red dot on the on button for coffee, blue painters tape on the door frame, pictures with details of who they are and Kirk's relation to them, red fingernail polish on the TV remote on button and many more tricks that help Kirk have a sense of dignity and control. This is our new normal. I have always said everybody's normal looks different. I'm sure it will continue to alter as time goes by.

I am amazed by the love and compassion my kids have. They have rallied around their dad! HE IS STILL THEIR SUPERMAN! I see it in the way they look after him and continue to try and understand what is happening to their dad.  I may struggle with that one for awhile.

As this disease strolls through our home like it owns the place, I continue to stand strong on God's promises......."I will never leave you or forsake you"





Sunday, December 29, 2013

Some days just stink!

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.......

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