Retreat

I had an amazing Caregiver Retreat over the weekend and now I’m home.

I’m home…Mike has a million questions as I try to settle him for bed. “Do I still work? Do I go to school tomorrow? Where do we live? Are the kids ok? Where’s my Dad? Do I have a wallet? Where are my guns? Why does my head hurt? What happened to me? Where is the bathroom? Where is my bed? What’s the date today? Is it summer break? Can I buy a truck? Can I watch the Saints play?”

…He must not remember that I was gone for for the weekend because he hasn’t mentioned it. Things are back to “normal” that quickly.

The thing I miss the most right this moment is laying down in a silent room and going to sleep without having to settle anyone else first. That was glorious. I didn’t have to cut up anyone’s food before I ate. Actually, I got to SIT and eat my meals!! I got to shower only me. Normally I shower 3 others before myself. The weekend was amazing on so many levels. I don’t know that I can even articulate what the weekend did for me. I connected with others that just get me. That was huge. There’s just so much that I can’t even find the words. I got to enjoy just ME for the weekend again. I have so much more to write about my weekend. Another time.

Since being home I’m already pulled in different directions. Mike needs help finding the bathroom, Mike needs medicine, Kenzie wants help, the toddler is doing toddler things, I’m worried about where Kayla is at and what Cameron is doing, laundry, dishes, unpack, get the kids ready for school, need to mop, and on and on.

I will rise and do it a thousand times. https://youtu.be/lwgr_IMeEgA

But I need breaks.

If you are interested in giving me a two hour break watching Caralyn and Mike, just let me know! I’m making self care a priority. Mike isn’t comfortable with everyone, but something’s gotta give. I will have a break down if I don’t start caring for myself and putting myself first sometimes.


I’ll rise up and I’ll do it a thousand times again.


5.5 years

I know that I have stuffed a lot of feelings away to deal with later and went into survival mode for the most part since diagnosis. You do what you have to do when you have to be tough. Survival mode doesn’t leave a lot of room for feeling. I feel like I’m starting to look around and assess the damage and feel the feelings. Sometimes it just takes having friends give you the permission to stop and feel all the things.

This makes me think so much of my friends who have lost their husbands. I wonder if they are starting to breathe yet. We all experienced the same big crash at the same time in our lives and we are in different places….but the crash of brain cancer entering our lives and changing everything was the same. I’m sure they were tough when they had to be tough. The sad thing is, years later I know people around them move on and maybe they are still heavy in grief. My heart hurts for those friends. I know some have remarried, some are still heavy in grief, some are somewhere in between on the outside and I wonder where they are on the inside.

One thing is for sure….we aren’t who we were 5 years ago. Some of us are stronger in some ways, some of us are completely broken in other ways.  I can’t even explain how these experiences build walls. But at the same time, we know how fast it can all be taken away. I don’t take people for granted. I try to always tell people when I appreciate them. Cancer has a way of making you love fiercely. It has a way of making you passionately kind. Because we realize how one act of kindness can be the wind beneath our sails to get through a day. And how on the bad days, lack of kindness can shatter you.  There are the walls….but there is also this strong desire to be a part of life.

Sharon Elizabeth Photography


Nov 8th

This was a couple of years before diagnosis. 🙂IMG_6437


Hello!!  I took a break from the blog but I wanted to check in and give an update. Mike’s MRI’s have been stable which blows us all away.  Everyone always asks what he’s done differently and the truth is, we don’t know why he has survived this long. There have been a lot of prayers for him….but there have been so many prayers for our dear friends that we met on this journey that have passed away along the way too. We appreciate life. There is so much we don’t understand in this world.

It has been 5 years and 4 months since his Glioblastoma diagnosis. Our lives are totally different than they were before diagnosis and totally different than anything we could have imagined. My life is centered around being a caregiver and taking care of the kids and grand baby. It’s so true that when one person in the family has cancer it affects the entire family.

We are here and we are surviving.

IMG_5707

 

 

Continue reading

Inspiration

I’ve realized lately that being an inspiration really drives me. Not in a way that I want attention or that I feel like I’m receiving some kind of praise, but more in the sense of wanting others to be better, to feel better, and to have hope.  If I can share my experiences and if that sharing can result in others having more hope or for them to find the energy to push through something they didn’t think they could face, or for them to have a desire to pay something forward and help someone else – that makes me want to share more. I want to see lives improved, refreshed, and uplifted.

I haven’t been sharing a lot lately for several reasons. Our life doesn’t change much day to day and there aren’t medical updates. In the beginning I was learning how to navigate Glioblastoma and I had three purposes for this blog – To give God the glory for the healing that I believed was going to happen, to keep friends and family updated, and to help others navigate their diagnosis and give them hope and inspiration.

Our experience with Glioblastoma is not a normal experience because Mike is still here 4.5 years later.  Now I’m learning to navigate an entirely unplanned situation.  I like to plan and I like to have an idea of what my future holds. Even when the prognosis was scary, there was comfort in planning.  I had to plan for him to pass away as thats the normal outcome of someone diagnosed with Glioblastoma. I have learned that I have no idea what life has in store for my family.

….Then I realized that life would be hard either way. That losing him would be unbearable…and I also realized that this new normal wasn’t going to be easy or full of enjoyment either. I’ve had to embrace that its ok to feel that way. That I shouldn’t feel guilty for grieving what we had or what we thought our future held. I did lose a lot with his diagnosis. He is here but there are many things that we grieve that are no longer here.  I had to realize that I couldn’t prepare for the future.  I have to just face it each day and navigate the best I can. I’m a wife in my 30’s – but I feel like I’m living a lifestyle of someone much older. He’s like a dementia/alzheimers patient. Going from having a husband who was a strong head of household in many ways to now being the head of the household has really been a transition for me.  All responsibilities fall on me. I now have a husband who doesn’t understand how to pour himself a glass of milk.

I’ve grown so much through this experience and I want others to know that whatever it is that you are facing – you can do it.

Having a husband on hospice and a 15 year old daughter who was pregnant felt impossible.  We did it and we are still doing it.  I could have given up. I could have decided I couldn’t face the next day. But I didn’t. I fought through to see the joy that I knew was coming. I’ve always held onto the thought that joy comes…if you hold on long enough, you will have a moment that made all the hardship worth fighting through.

Establishing a successful business felt impossible with the limitations of being homebound and taking care of such a hectic family – but I’ve made Trainer with LuLaRoe and have been absolutely blown away with the success of my business.  For many months I thought “Ok, I will keep putting one foot in front of the other until I fail, and then I will throw in the towel.” I gave myself permission to fail before I even started. In my mind, I wanted to go ahead and try and get the failure over with so I could get that desire to try behind me.  I knew I wanted to try selling LuLaRoe. I figured I’d fail. Guess what…I’m 6 months in and instead of bracing for failure, I’m now excited to continue to build my business.  Sometimes you have to face a situation with tenacity. You have to dig deep and you have to fight to get through some things.

So here I am – hoping that I can give  you some inspiration to face those things that feel impossible. New diagnosis, scary prognosis, personal situations – whatever it is, you’ve got this!

15823018_10208348923583996_8745954660082840080_n

 


New Year

Wow, here we are in 2017 a family of 6! Everytime I looked at the mantle this season and saw 6 stocking hanging there, I couldn’t help but think of the GBM prognosis and how thankful I am that Mike is a long term survivor. I’ve shared lately about how hard it’s been but I wouldn’t choose for him to not be here. I’m committed to him in sickness and in health. I wanted to share a photo that we took at our Grandbabies one year birthday party. Please keep the prayers coming, I appreciate them! image