A year.

A year. 12 months. 365 days. 8760 hours without Mary. I have survived a year. It hasn't been easy. And I  have just focused on mainly surviving this year. Denial helps a lot. If I focus too much on her death I can't function. Basically if my life was a perfect bowl of cereal with all the marshmallows placed perfectly on top (because that is my favorite kind) and all color coordinated before then it now feels like someone took the bowl and shook it up and spilled it everywhere. Then they ask me to put it all back together again. Seem impossible? It does to me also. Everything is a mess and mixed up and fixing it does sometimes seem impossible. Pieces will always be broken and missing.  And I fear the mess will take forever to clean up.  Sorry, if  i'm not the best with metaphors.  And maybe I'm hungry too:/ I sometimes imagine Mary is still here laying beside me and in my arms. I can almost smell her and feel her and hear her sweet voice. But she is not. It almost feels real....but it is not. When I lost her I lost many hopes and dreams and also a best friend who loved me unconditionally. As I did her.  If I am lucky I might dream of her and it seems real enough.  I am able to hold on to her memory a little stronger and it is a little more clear. She seems to feel a little closer for a day or so. I can't think about the day we lost her very often. The reality of it is so horrible. You really can't imagine what it is like to watch a child you put so many hopes and dreams into take their last breath. Especially when just the day before they were up talking and fighting and eating 6 deviled eggs. To lay beside your child for hours knowing it was her last hours and trying to soak in every moment, feeling her warm skin as long as possible knowing that time was short is a feeling no parent should have to experience. Ever. Wondering if you really did all your could? If she was going to be okay on the other side? If your life could go on without her? Well, let  me tell you...It does. Time ticks on...and on...and on. Sometimes so slowly it seems to be in slow motion. Sometimes you feel like it isn't even your life, but a dream. Or you are watching someone else live your life from a distance. You don't even recognize yourself anymore. You are in a fog as you and your husband have to go home without your baby.  One child always missing in a picture. One always empty seat. One less present bought. One less everything...forever. You have to learn to exist as a family of 4, not 5.   Exist outside of the hospital. Communicate again about things that don't involve just keeping a child alive. You must try to be "normal" again. You must go home to your other children that are without a sister they cherish. You have to try to explain her passing to them when you can't quite grasp the reality yourself. The pain and hurt are indescribable. Then you have to figure out a way to function. You are still a mom, wife and friend. You find a way to wake up, work, pay bills, clean house etc. etc. Then one day you realize the pain isn't ever going away and you have to learn to exist with it. I dread life without Mary in so many ways, but I look at things differently now also. I have changed. My outlook on life is different. I want no regrets. I want to find true happiness again. I hope I can. I want everyone I love to be able to. I kind of want to be a little selfish now. Life is really short. Really really short. It is fragile and this world is warped.  If I could leave and go be with Mary now then I would-but I can't yet. So until that day I have a mission to change what I am able to in this childhood cancer world.  I feel maybe this was my purpose on this earth all along. Not to be just a mom or a wife in my safe little bubble, but to branch out of my comfort zone and change things. Make a dent. A real change. I use to want to travel the world and join the peace corps. Do big great things-or so I Imagined. Maybe even be a missionary in Africa. But I stayed safe. I followed the rules and did what seemed was best for me. Easiest. But now I believe this is my real mission. It is scary. Really scary. But that is ok. I will spend this next year working on this new venture. It is intimidating because I really have no idea what I am doing but I have a purpose and a passion and someone has to do it. So, here I am. I could stay home and write posts on FB and sell bows and tshirts etc. etc. That is all grand and has it's place but we need to do more. Lots more. We need more $ and we need to move faster. I hope you will come with me. I will keep Mary's story alive and the story of her friend's alive. I will fight for better AML treatments for children. I will tell the truth. I am planning to lobby and fight for change from our law makers. It blows my mind why nothing is changing or being done. I don't get it. When the facts are the facts. The truth is the truth. And the truth is sinful.

 

Childhood Cancer Facts 

Incidence:

Currently, one in every 330 children in the United States develops cancer before the age nof nineteen. The incidence of cancer among children is increasing. Each 

• school day, enough children are 

• diagnosed with childhood cancer to empty two classrooms!

• (According to www.ChildCancer.org)

Survival Rate:

• Depending on the type of cancer and the development upon diagnosis, the ACS estimates that approximately 2,300 children will die from cancer in the year 2000. The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer. (According to www.ChildCancer.org)

Causes:

• Largely unknown. Currently, there are no established guidelines for childhood cancer prevention. (According to www.ChildCancer.org)
• 
  

Description:

• Childhood cancers are mostly those of the white blood cells (leukemia’s), brain, bone, the lymphatic system and tumors of the muscles, kidneys and nervous system. Each of these behaves differently. Cancers in very young children are highly aggressive and behave unlike malignant disease seen at other times of life. The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80% of children show that cancer has spread to distant sites in the body when the disease is first diagnosed. (According to www.ChildCancer.org)

Current Treatment Options:

• A child with cancer must be diagnosed precisely and treated by clinical and laboratory scientists who have expertise in the management of children with cancer. Advances in treatment have been made in some childhood cancers; however, many cancer types offer very  aggressive treatments with lower survival rates. Many treatments include: several rounds of chemotherapy, tumor removal, radiation therapy, bone-marrow-transplantation, and various clinical procedures. (According to www.ChildCancer.org)

Cancer Facts/Statistics:

• Each school day, 46 children are diagnosed with cancer. (According to www.Candlelighters.org)
• One in 330 children will develop cancer by age 20. (According to www.Candlelighters.org)
• Each year in the U.S. over 12,600 children are diagnosed with cancer. (According to www.Candlelighters.org)
• Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis. (According to www.Candlelighters.org)
• Cancer remains the number one disease killer of America’s children – more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined. (According to www.Candlelighters.org)
• 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults. (According to www.Candlelighters.org)
• There are currently more than 270,000 childhood cancer survivors in the U.S. (According to www.Candlelighters.org)
• Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe. (According to www.Candlelighters.org)
• Worldwide, 160,000 kids are diagnosed with cancer each year. (According to www.StBalricks.org)
• Childhood cancer kills more U.S. children than any other disease – more than AIDS, asthma, diabetes, cystic fibrosis and congenital anomalies, combined. (According to www.StBalricks.org

I care because it happened to my family. I lost a child to a disease that is frustrating because the statistics are skewed and the truth told is not the whole truth. Not enough people seem to care, or if they do care they haven't cared enough to do anything to make things better.  If my story makes you sick or if these facts bother you then you can can help me

change things. Many of you have already and "Thank You" isn't enough.  You can open your checkbook, you can have fundraisers, you can share Mary's story and other's story and share also share knowledge. Tell the truth. Write your congressmen and be a pain in their as*.  Don't stop until someone listens and helps. Don't be afraid. Kids matter. 

Today I am going to sit on the beach, enjoy a drink and remember Mary. I will remember a happy peaceful Mary at the last beach Mary got to visit. A place she loved, St Simons Island. I will look for her in the sunset and in the stars and remember the happier times we shared here-our happy place. I will walk on the beach and try to think about her wonderful miracle birth and not focus on her death. I will try to focus on her legacy. Tomorrow I will wake up ready to fight another day. And in her infamous words..."Never give up, no matter what."