Sunday, December 30, 2012

Jillian Marie Hayes-Wagner 9/24/89-12/29/12


With deep sadness, and a broken heart I tell you that on December 29, 2012 at 7:30 am,  Jillian Marie Hayes-Wagner completed her work here on Earth.

She was surrounded by family constantly during the last weeks here, and on her last day, just as I was here for her first breath of life, I was holding her hand telling her how much I love her as she took her last . Her husband Steve was also holding her,as he has never left her side.

Thank you all for the loving support you have shown us these last two years. They do make a difference.

The next few days will be busy making preparations for her Celebration of Life. We are entering a new beginning on Jillian's Journey with Melanoma- A Mother's Story.

More later.


Sunday, December 23, 2012

That's Why I Pray....

“This world keeps spinning faster, to a new disaster, so I run to you”…..

“I’d go back to December all the time”…. 

“I’m begging for forgiveness, I want to make a difference, even in the smallest way.
 I’m  only one person, but I can feel it working, I believe in better days…
I Believe in better Days”.

Listening to Pandora and reflecting while the music washes over me. The songs have sparked thoughts that have been circling for a few days now. It would take several posts to reveal all of them. Another time.

Christmas is upon us. Normally I have all of my shopping done well in advance. This year however, I have not stepped foot in a store, or a mall. In fact, I haven’t left this house since we took Jillian home from the hospital almost four weeks ago. My focus has been on Jillian and my family. At first I felt guilty. I expressed my concern to my kids, but they just scoffed at me and assured me it didn’t matter if I bought gifts this year. It just wasn’t important. And they are right. We already have our gifts. The gift of family, the gift of love. Tonight, when you tuck those precious kids in bed, celebrate your gifts. Cherish them, protect them. Love them unconditionally.

Yesterday morning I was lying in bed with Jillian, holding her hand while she slept. She has been sleeping most of the time now, waking up occasionally for her medications, maybe some food, and something to drink. She isn’t talking much. I think it just takes too much effort. But even with her eyes closed , I know she is aware of what is going on around her. She nods or smiles when we are talking. That cocky half grin she has. So cute. And sneaky. J                        
Lying beside her, I listen to her breathe. I watch as her chest rises and falls. I look at her precious face as I stroke back her hair.  She looks so peaceful. I am filled with so much love for her, and the silent tears fall from my face.

Things are spinning fast, and I can’t stop this roller coaster of Melanoma Cancer for her. I think back to when we were in the hospital and the doctor told us that the treatments weren’t working. When we were hit with the reality of coming home with Hospice care. I will never forget Jillian, with tears streaming down her face saying, “ I just want things like they were, I just want things like they were”. And my choked reply, “I know sweetie. So do I. But they won’t be the same. You’re tumors are growing. Things aren’t the same”.

Life is never the same. Things are constantly changing in our broken world. We do have choices though. We can choose to let life break us, or we can chose to live. I know what Jillian would do. And to honor her life, her fight, and the fight of so many others currently waging their own Black war, I will keep my promise. I will try and make a difference so we can all see better days. Because I believe.

Love and Peace~

Monday, December 17, 2012

Connecting the Dots~ Part I

Since September, when we received the news from our oncologist at U of M that Jillian’s tumors were growing, I have been really taking a good look at my life. I feel as if all the experiences I've had in my life have been preparing me for this time. Right now.

When I was newly married to Jillian’s dad, my best friend was diagnosed with Hodgkin’s disease. At the time, cancer wasn’t something that happened frequently, especially to young people. At least not in my secluded world.

 Debbie fought the disease for two years. After she died, I felt so alone. Her parents were dealing with their own grief. I didn’t have anyone to talk to really. I had other friends, but what I really needed was time with her family. I still needed to be connected to her somehow. I wanted to go through pictures of her with them. I wanted to laugh about the time we all drove back from Florida and her younger brother threw up in the hat we won at Disney World. I wanted to cry with them, laugh together. I just needed to share. I am convinced that if I had more opportunity to talk and grieve with them, I would have handled the loss of my best friend a little easier. As it was, it took me ten years to think of her without crying. I STILL think about her every day.

I have been receiving so many heartfelt messages from Jillian’s friends. I know they are struggling with losing their friend, classmate, and team mate and trying to make sense of it all. Several friends are using Jillian’s page, "Jillian Hayes- Fall Seven Times, Stand Up Eight" as a place to remember and to share and to post photo's. Many have lost friends recently,and it is frightening to face their own mortality when they lose one of their own.

Because of my own experience, I want to make myself available to whoever needs to get in touch with me. Message me on the page, text me if you want. Plan time to come see me so we can talk if you’d like. For those that know Jillian, she would want this.:)

This is just one of the dot’s that have been connected for me. The others can wait for another day to write about.

Love and peace~

Saturday, December 8, 2012

When Tragedy Strikes....

Tragedy can strike at any time and to anyone. It can disguise itself in many different ways. It can be a loss of a parent, a sibling, spouse or a friend. Or a child.  It can be the breakup of a relationship, or the loss of a job. Either way, when tragedy strikes, it can be crippling.

Watching my child decline a little bit each day, knowing the end is near,  is the hardest thing I’ll ever have to endure. Nothing can compare. Ever. Watching Jillian cry as she understands exactly what is happening  to her, and that I can’t fix it, is devastating to my heart.

I just got done reading some of the face book posts that people have been putting on her wall and on the face book page I created for her, Jillian Hayes- Fall Seven Times, Stand Up Eight. Tears slowly slid down her face as I read the beautiful, heartfelt letters from friends, schoolmates and soccer teammates. It is frustrating for me because I cannot get into her head. I still cannot wrap my arms around the reality she is dealing with now, facing her own death. I just tears me up inside. I can’t make this go away like a mama should be able to. All I can do is love her through it and to assure that she has made a huge difference in everyone she has touched in her short, interrupted life. And how much I love her, and how proud I am of her.

When I finished reading all the posts from her friends, I asked her if she wanted to hear what I wrote for her. She nodded her head yes. I am happy that I got the chance to tell her once again how special she is to me, and what she means to me. I’m happy that I was able to tell her about her Grandpa’s promise to me before he died and that he is waiting to greet her with open arms when she gets to heaven.

Before tragedy strikes you or your family, if you have words that are unspoken to someone who is special to you, say them now.

Here are some of the things I read to her today. Words to Jillian from her mama.

This hurts Jillian. From the moment you were born into this world twenty three years ago, you have been teaching me and everyone around you what it means to live. As a child you had such a zest for life, which continued on as you became a young adult. You are a magnet. Others are just naturally drawn into your light. That inner light grew brighter with each passing day, gently touching people where ever you went.

Just as your life was getting started, you were given the most difficult challenge any young person could face. And like any challenge on the soccer field, you took this one on with fierce determination and courage.

You, my daughter, have been my precious gift. You have taught me what it means to Stand. To be able to see joy, love and laughter in the middle of so much strife. You have inspired me and so many people throughout your melanoma cancer journey. People from all over the world know your story, and you have given them Hope when they couldn’t find it themselves.  I am so proud of you sweetie and so incredibly blessed to have been your mama.

So now, that light that is you will shine on within us. It will burn brightly and pass from one person to the next, spreading joy and love and laughter. There is no stopping it.

Your job here on Earth is almost complete. I promise you that I will pick up where you left off, shining your light for all to see. I will make you proud,

Well done sweetie, well done.


Thursday, December 6, 2012

And the Greatest of These.....

So we weaving down a new unchartered course on Jillian’s Journey. It has been a long, winding road with many, many, twists and turns. I won’t lie. This whole thing just absolutely sucks. Watching someone that you love, especially a child, declining a little each day is heart wrenching. No, it’s worse than heart wrenching. It’s devastating. And it could even be crippling for some.

I wanted to share one thought with you today. Love.  I have learned more about love on this Cancer road than I ever would have imagined possible. The love for family. The love between two young people as they learn to live with this horrific disease. The love for siblings, the love for parents. The love shown to us through friends. The way my family has stuck together and supported each other every single step of the way, even when we weren’t always so loveable.
We still have more pavement to cover, but  I know without a doubt that this family will have no regrets.

I must be the luckiest mama bear alive.