I heart bacon. Because I am too tired to think of a whitty title tonight.

Ronan. How did I do what I did today? Looking back at today, I have no idea. It wasn’t me today. It was all you……

Started off the day like always. Up, showered, dressed, boys up, showered, breakfast, backpacks packed, lunches packed…. out the door to school. Dropped Liam and Quinn off. Kissed them good-bye. Drove over to Taylor’s to meet a girl named Samya. Samya, the beautifully talented Mama who I sat and had coffee with. Who lives her life filled with LOVE. Love for her job, her kids, her husband, her running, her friends, her friends’ daughter who is battling Cancer…. who I know, very well. Little Mia. You remember, Mia, right Ro? I know you do. We will go back to Mia in a minute. Samya…. Samya knows what it means to really have it all. And not in a big spender, money kind of way. In a way that; and I quote, “I am married to a Firefighter who is going to freak when he sees the water bill because I let my kids take a 40 minute shower together this morning. They were making potions out of soap, water, and having the best time doing all the things kids should be doing,” kind of way. In the kind of way that she knows what it means to be married to her soul mate, the man of her dreams, to have 2 healthy kids, and a job she LOVES. She is thankful. She is appreciative. She also knows that shitty things happen in the world and if she can do something, like making a dear friend, an awesome shirt to wear in the hospital, while her daughter battles Cancer; that she is more than happily willing to do so. I sat with Samya and talked to her like I have known her forever. I cried in front of her when she asked if I was ever going to sleep well again. I just told her, how would I ever sleep well again, when I don’t have you to kiss goodnight? She made me laugh when she told me that the first time she talked to me, she expected my voice to be different…. how surprised she was at how young I sounded. I told her how I get that a lot. I told her how I just had one of our lovies point that out to me. How he told me I sounded like a 15-year-old girl, on my voicemail and that I needed to change it. I told him I would only change it if it could go something like this…..”Hello. You’ve reached Maya Thompson. I can’t come to the phone right now. Please leave a message, and I will get back to you as soon as possible. Thank you. Have a GREAT day. And FUCK YOU CANCER!!!!!!!!!!!!!!!!!” The thought of this makes me laugh out loud. How AWESOME would that be? Shocking? I guess. Immature? Maybe. Totally worth it? Absolutely. I wonder if anyone has this on their personal voicemail. If they do, I would like to be their friend. Anyway Ro baby. Back to Samya. I ran some ideas past her. She ran some past me. I think we came up with a new slogan for one of her shirts. So excited to be a part of it. More to come, later on this:) Thanks, Samya…. for today and for reminding me that once you meet your soul mate(s) in life, that’s just all there is to it. Do people have more than one soul mate in this world?? Totally. I have several. They come the form of my husband, a few close friends and my boys, you included, Ro baby. Some have been around for a long time, others, I have found after going through something like this. I am lucky enough to have all of mine, right in front of my face, holding my hand during the worst time in my life. Refusing to let go.

I got to talk about the Wooddawg today, like I haven’t been able to in a long time. Like we were that normal couple, once again, that we never will be again. But we are still here, working and fighting because we know what it means to have everything ripped away from you, and to still be expected to be left standing. I don’t want to stand alone in all of this. As much as I say I do, that I am a tough ass, that I can do this, alone. I can’t. I don’t want to. I would not survive it. I can name on one hand, the things that are saving my life now. A few people are responsible. I am learning to accept them. I am learning to let them help me. I have to embrace them. Or else big trouble lies ahead. I don’t want or need anymore trouble.

After I left Samya, I drove to PCH. Our old home away from home. I let a few of our favorites, know that I was coming. Sharon was one of them. I parked in the same parking garage, that we parked in hundreds of times. I got into the elevator, without you, and walked into the clinic, without having you to carry. I asked to person working at the desk, to let know Sharon that I was there. I sat down and after I realized, where I was and what I was doing, I almost threw up. I thought I would be o.k. to walk into that clinic today. I wasn’t. Sharon read me like a book as soon as she came out to me she gave me a hug and we quickly walked out of the waiting room and headed outside. We went into the old hospital, sat down at a table and I told her what I was there to do at PCH today. I showed her what I had brought with me, to help plead my case. She loved all of it. I told her how I felt as if there was a lot of room to improve as far as taking care of the parents. How I know what it is like to be so overwhelmed, scared, lost, confused but expected to make a choice in regards to a horrific diagnoses. How lost and lonely it feels. I told her my ideas. I told her I hoped someone would listen. I told her how badly I want some things to change, for the better. I told her how I keep asking myself what I did wrong that you had to die. My strong voice, became weak and soft as the tears poured down my cheeks as I told her I must have let you eat too much candy towards the end of your life, which is why your disease spiraled out of control. She held my hand and told me that was not why this happened. That we, as parents, did everything we could. That your Cancer, was just too strong and too smart. I know she is right, as I made you eat all things healthy, but you loved your sweets every once in a while, as all kids should. I still think to myself, that I killed you. That this is all my fault. I don’t know if I will ever think otherwise. You were my baby. It was my job, as your mom, to save you. I promised you I would. I will forever hate myself for not being able to. I know how barbaric this sounds; but it is instinctual to feel this way after losing a child. It is human nature of a mother and a child. For as irrational as this sounds, it makes perfect sense to me.

Sharon and I parted ways with our hugs and I love you’s. I do love her. I remember how much you loved her, which makes me love her even more. I am so sad, that you no longer get to chase her around, hug her, give her your Hi-Fives, let only her, change your Broviac Dressings…. how I never get to hear you tell me, “Mama… Sharon’s so nice. I love her.” I swear I can still hear your voice telling me that. God, I would give anything to hear you scream at the two of us, “I NOT A BRAVE BOY!!!!” as Sharon would clean your skin while changing your dressing. I would give anything to be back in that hospital, cuddling with you, thinking that the poison that was being injected into your body, was actually going to save you. Now, I am left alone, standing in the middle of PCH, without you… trying to fix what I think needs to be repaired, because I truly do care and want to make a difference in as many ways as possible. Even if it just means getting that damn coffee cart to come around more often than it does, to make mom’s like, Sandra, (Mia’s Mom) HAPPY. (for the 5 minutes of the day that she gets to feel happy).

I met with 2 lovely women today. I sat with them and they listened to what I had to say. I don’t even know where my words came from, but they were there. I don’t know how I was able to sit there, without sobbing and running away. I played with my locket that holds some of your ashes in it. I kept telling myself, that you were right there with me. I felt like you were. I felt strong. Stronger than I have in a while. I was able to present my ideas and have them welcomed with open arms. The best part of it is how comfortable I felt, expressing what it is that I felt could improve. How these 2 women didn’t just handle me like a crazy mom, who’s son had just died, so WTF is she doing back at PCH so soon? They didn’t shove me out the door, telling me they would get back to me. They made what I was asking, what I was suggesting, happen right there in front of my very eyes. They told me the position they were willing to create…..with some fine tuning….for me and some other lovely volunteers, once I was ready… to just say the word. DONE. Just like that. Unbelievable, Ronan. All because of you and the kind heart of these two woman at PCH, who believe they can do better and are willing to do whatever it takes, because no parent should have to feel so left in the dark.

Ronan. I am beyond tired right now. Too tired to finish my thoughts for the night. I’ve got to take advantage of my sleepiness while it is here. I love you. I love you, Sandra, my dinner date tonight. Ro. Please watch over Mia down here. Please. I am so sad from hearing tonight how she cannot even walk right now because of how badly her disease has destroyed her little body. Sandra deserves a break. Throw a little happiness her way. Take some of the happiness that you are saving up for me, and give it to Mia and Sandra. They deserve it. They need it. I can wait. I love you baby boy. To the moon and back forever and ever. I hope you are safe. Sweet dreams, Baby Doll.

xoxo

Voting is still going on…. So do it<3

If you are still able to vote, DO IT:) I don’t really care if I win peeps… I am up against another Neuroblastoma mom which just makes me feel yucky. I wish the person that had nominated her, had put her in a different category. Come to find out, the person that did nominate her, tried to put her in a different category, but Babble said she needed to be in the Charity one. The bottom line is, we both lose because our child has been taken away from us. But AWARENESS is being gained. That is truly what is going to make a difference. I hope to meet this mom someday, hug her, and tell her Thank You for all of the amazing things she is doing in her daughter, Layla Grace’s name. I know Layla and Ro are working together, “to get shit done!” They will be a force to be reckoned with.

I am happy about the awareness that this will bring to Neuroblastoma, either way. I am thankful for all of you who have spread the word and gotten Ro’s story out there. Thank you from the bottom of my heart<3

http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson

Read it and Weep. Because you should.

  •  Every school day 46 children are diagnosed with cancer.
  • Sadly, over 2,300 children with cancer die each year.
  • 1 in 330 children will have the disease by age 20.
  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.
  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.
  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.
  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.
  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel.
  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.
  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
  • The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.
  • What Causes Childhood Cancer?
  • Every family is potentially at risk.
  • In almost all cases, childhood cancers arise from non-inherited mutations (or changes) in the genes of growing cells.
  • As these errors occur randomly and unpredictably, there is currently no effective way to predict or prevent them.
  • Most adult cancers result from lifestyle factors such as smoking, diet, occupational hazards and exposure to other cancer causing agents.
  • Cancer Research Funding
  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.
  • Most drugs used for childhood cancer treatment are over 20 years old and were developed to treat adult cancers.
  • Cancer treatment can cause serious side effects that often last a lifetime.