Friday, December 29, 2017

On This Day.....

I woke up at 4:30 that morning. It didn’t seem strange to be up that early, I hadn’t been sleeping soundly for weeks. I headed for the dining room to check on Jillian and Steve.  Her bed had been moved downstairs, making getting around more manageable with Jillian’s wheelchair.

Oh…..Steve and I made quite the team! We had a routine that worked very well for us. I would stand behind the wheelchair to hold it steady, Steve would wrap his arms around Jillian’s chest, lift her up, while I’d quickly pull the wheelchair out of the way. He would then pivot her to the couch, or where ever we needed to go., and as Steve gently lowered  her down, I would lift her legs and get her into a comfortable position. Whew! We made it. And this went on throughout the day.

At night we used a monitor so I could hear Steve if he needed help during the night. Looking back, I really am amazed at how well we worked together. Jillian made it easy. She never complained.

Jillian’s breathing had changed the past couple of days. Slower, less breaths in between. It was frightening in a way. Unsettling. Maybe because I was hoping for that miracle.  But any change meant change.

I made myself a cup of coffee and walked outside to sit on the stairs of the back deck. It had snowed the night before. I sat down on the step, not feeling the cold through my pants.  It was so quiet.  Just sitting. Listening. Praying.

I heard the owl that morning, I knew there was some meaning behind the haunting call it made, but I didn’t know what it meant. But I do know there was some significance in hearing the owl during the weeks prior to that early December morning. When the owl was silent, I went back inside.

As if in slow motion, with no real thought, I drew a bath for myself. I wasn’t cold. I’m not sure why I felt the need to take a bath so early that morning.

After I was finished getting dressed and ready for the day, I headed back to the dining room and sat with Jillian. I listened to her breathing. It was different. I knew this morning was different.

I kissed her chubby cheek. I caressed her face. I ran my fingers through her hair. I held her hand and memorized every single detail. She had beautiful hands, long strong fingers. Beautiful, memorable hands. I couldn’t stop touching her. I wanted to fuse my life into hers.  My precious daughter- I would gladly have given my own life for hers. But it didn’t work out that way.

Jillian’s last breaths are forever branded into my soul. I hear them when I lay my head down at night. Five years later, I hear her last breaths. She has fused her life into mine.

So, as I look back and remember that last morning, Jillian’s last day on earth, I contemplate what I’ve learned since that day:
  • Grief has no rules, no boundary’s, and will last a lifetime.
  • You are not alone. But in the end, you do grieve alone. You do it your own way. And that’s perfect for you.
  • Do the work. If you have a Jillian day, embrace it.
  • Never listen to what others try and tell you when it comes to how you should be feeling, when you should be feeling or what you should be doing. It’s not about them. It’s about you.

  • You are not the same person. That’s okay. You will learn to accept this new person and love her/him. And so will everyone else. Be true to your new self.
  • Love on your loved ones.
  • Grab your puppies.
  • Get a chicken.
  • Run.
  • Love wins. It forever wins.
  • And always remember… Psalms 46-10 “Be Still and Know that I am God”.
 In loving memory of our beloved Jillian Marie Hayes Wagner-09/24/1989-12/29/2012

Wednesday, July 26, 2017

Smell the Stupid Roses.....

I’ve heard it said many times over the years, “Cancer changes you”. I’ve always believed that statement to be true, but what I didn’t realize was that the changes aren’t always so wonderful.

I’ve often heard people say, “Cancer doesn’t define me”. I wonder, what does that mean? In one fell swoop, hearing the Dr. tell Jillian, “ You have melanoma”, has defined my whole world! It sure has defined me. Nothing is the same. Nothing.

I think about Jillian throughout the day, every single day. I cry sitting at my desk at work some days when a random memory skitters across my heart. Not a sob, just tears running down my face with a lump in my throat. I can usually take the memory, give it a kiss, and safely tuck it away for when I can really examine it. And then I go about my day.

But that underlying sadness is always there. Yes, I have memories. Many, many, wonderful memories. But somehow, it doesn’t feel finished.
The memories are not enough and I want more. There goes that lump again. Damn.

I have very little tolerance for people with their judgement's and grudges these days. That is one of the not so great changes cancer has left in its wake. I just have no patience for that nonsense.  Figure out your stuff and fix it.

If you could take yourself to the ocean, or in my case, Lake Michigan, and just be still. Sit on the beach (with sunscreen of course), and let the sounds and smells seep into your being, lulling you into a sense of peace. Go to the place of wonder where the vastness of our beautiful world reminds you that we are so insignificant and small in comparison. Nature has always done that for me. It brings me to God. In the end, that is the only thing that really works for me. “Be still and know that I Am God”.

I look at my life, the plans I had, and I can hardly believe this is where I am today. It’s almost like I’m reading someone’s story other than my own. This stuff just doesn’t happen, or if it does, most certainly not to me. So surreal. But I am making my own story too, in a sense. It’s not all out of my control. I can control how I live through it, how I react to it. How I grow through it. And I’m okay with all that. I really am okay.

Although cancer has made some negative changes in me, it has given me a new set of eyes that come with a deeper understanding than I’ve ever had before. A deeper appreciation for my children, and their mates. For my grandchildren. For all of my family, and Steve’s family. For my friends. I appreciate all of you, and how you’ve stood by me and loved me when I’m not so loveable.

I love you. Thank you.


Wednesday, May 3, 2017

May-Melanoma Awareness Month 2017

I’m a blogger. So I guess I’ll blog.

May is Melanoma Awareness Month. We are on Day 3. For quite some time, I’ve been trying to limit my activity on social media. When Jillian first died, I was a mad woman trying to promote awareness to this horrific disease. Billboards everywhere, TV interviews, calls and emails with people touched in some way by melanoma….I couldn’t stop. I had to share what I knew, I had to keep Jillian’s name alive. I was horrified by the thought that she would be forgotten. I did not want another family to experience the searing grief that we do.

I began to realize that all of this activity was hurting me. I would scroll through Facebook and read the stories. Stories of young children fighting for their lives. KIDS! Stories about young wives and husbands trying to pick up the pieces of their lives after their spouse has died. How do they deal with the aftermath? How can they possibly explain this to their young children? “Daddy is in Heaven, sweetheart”. “Mommy loved you so much, she’ll be watching over you and will always be with you”.  (I want them here with me!)

And then there are the young girls loving their tanning beds, showing off their Golden Glow. Getting their “base” tan. Soon after, having to hold their best friends hand as she explains she now has Melanoma Cancer.

And the photos of the scars. Some of them would literally turn my stomach and make me sick. So much mutilation.

But let’s not forget the people I have known and loved that have died from this disease. The Melanoma community is a tight knit group of individuals. We support each other, we share, we cry and we love. And when one of them dies, we all grieve. It brings back every single moment I experienced with Jillian. AND IT HURTS!!!

Mothers and Fathers who have lost their children to melanoma, swimming in grief. How does that work? I can safely say, not very well.
Parent's aren't supposed to bury their children.

And then, we have the dear friends that we have grown to know and love. Some we have even met in person. The ones whose melanoma has progressed. We stand by helplessly. We pray for them. I hate it.

It makes me angry when people know the dangers of the sun and tanning beds but they choose to go ahead and risk their lives in spite of the warnings. Even the people who knew Jillian personally. I wonder if they truly understand that they are not only hurting themselves, but they are hurting the ones that love them. The ones that depend on them. Good grief.

I cannot change the world. I can only change me and do what is right for me on this day. This moment. And it is always changing.

For this Melanoma Month of May, 2017, I will pull up my big girl pants and fight for you. I will continue to post information in the hopes that you listen. I will do this in spite of the pain it causes me. We all do in our grassroots community. I’m not alone in this, not by a long shot. We do this for YOU. And for those that love you.

So, when you roll your eyes and move past these incessant melanoma awareness posts in your news feed this month, think about the intentions behind them. Perhaps we might just save a life. Maybe it’ll be yours.

Maybe mine.

~ Peace