The Good, The Bad and The Somewhat Ugly

The past few weeks have been extremely busy, emotional, inspiring and just plain fun. It’s hard to try to express yourself in writing when your emotions just seem to overflow everything you try to put on the page. I have been thinking and thinking about how I want to say things…then end up so busy that I don’t have time to write. I also have not been in the mood to cry while I write. Normally, this would be my outlet and allow me to feel better after getting it on the page but I have spent most nights lately having dreams that leave me emotionally wrung out.

Wish Riders…what an amazing experience. We gained new friends and family while Edgar was involved in the filming of the pilot episode. To be around people who fully understand the power of wish was incredible. These people understood the difference between seeing the support of people around you and feeling, being surrounded, in the support. That feeling of support is, what I believe, inspires wish recipients to give back to their communities and Make-A-Wish. That feeling of support helps pull you through life’s darker moments. It can help bring you back from the edge, when all seems lost. All of us came from different back rounds and our experiences with illness where different but the commitment to help others have those same moments of peace, hope and joy that our families experienced during their wish was incredibly strong. While we may not be able to cure the disease, we can help ease the heart. I know that ease of feeling from all of you is what helped our family get through the dark times. It still does! Please, please, please check out the web site for Wish Riders (www.wishriders.org) and “like” them on Facebook. The bigger the grass roots fan base the show has the better chance it will have to make it on the air waves…the bigger chance to help even more kids receive the healing power of a wish. Here is a fact for you that most people don’t realize…80% of “wish kids” survive. The hope and strength a wish inspires in them is something they will pass on for the rest of their lives.

Sophia went to Camp Hope this past weekend. How much fun and how busy she stayed was evident in the fact she slept almost all the way home from Livermore. She was surrounded by kids and counselors who had all experienced loss. An environment where she could let it all out and everyone would be on the same wave length. We were told (something everyone knows about her) that she is much older emotionally then any 6 year old should be. I was told to fire her occasionally (she likes to be a therapist and tried to counsel the other kids in her cabin) and remind her it’s ok to be a kid. She said her favorite thing that she did at camp was to “trash the boys’ cabin.” I guess this went back and forth all weekend. The therapist from her cabin said she had an emotional breakthrough on Saturday night at the candlelight vigil where each child lit a candle and spoke about their loved one who passed away. She hasn’t really wanted to talk about it yet and I am not pushing her. I pull one of her crafts that she made from her bag and ask about why they made it but she just shrugs it off. I will wait until she wants to talk and try to keep my ears & eyes open for signs.

The dreams are amazing in some ways but…no other way to put it…totally suck in others. For the most part I love to dream about Natalia. Most of the dreams are good loving dreams. I get to see her face and hear her voice again. I just don’t want to let her go when the dream is over so I end up waking up in the middle of the night crying. I can’t get back to sleep because every time I close my eyes I see her face and the grief just overwhelms me so I end up staying awake…good plan until you have to get up and face the world the next morning. The other dreams though…they pick out every piece of guilt and hurt that my subconscious mind can dig up. Things pop up into them that if I was awake I would never think of. The main theme is the guilt over not seeing signs of the brain tumor. I hear her voice insisting that we had to go to Monterey immediately, before we knew about the tumor. I see all the little markers of brain tumor that could have just been her allergies and the new medicine she was taking causing. The dreams come in many forms and many different things take place in them. Some dreams are replays of actual events while others show things that never happened. But they all play on my fragile human emotions and are hard to overcome. So I have been a bit sleep deprived lately. I was ready to hit the wall.

Edgar and I tend to hit the wall at the same time…crash and explode over the smallest matter…then talk about what is really bothering us. The problem for us both is that we don’t realize how much we are holding in trying not to cause each other pain. The main point…we do talk about it…the pain, the guilt, the loneliness of feeling Natalia close but not being able to hold her. I think this is where some families break. They don’t talk about what is bothering them. The emotions get so out of control that it is hard not feel unjustified resentment and when the explosion hits they just walk away. Because these emotions are incredibly strong and make you hit out without thought of the other person’s feelings. I hope we are teaching Pia to talk about the feelings when they are getting to be too much to control. I now have another way to ease the emotions…my early Mother’s Day present…my helmet, leather jacket and boots. I am now a biker babe! The feeling you get from riding is amazing. It helps to clear away the cobwebs of your mind and lets you breath deep. No wonder Edgar likes it so much.

Well, I think I got through just about everything I wanted to talk about…and all without crying.

Much Love,
Roni

National Brain Tumor Awareness Month

May is Brain Tumor Awareness Month. Break out those gray ribbons! Some of the Facts:
• Each year approximately 187,000 adults and 2,900 children are diagnosed with a brain tumor.
• Brain tumors are the leading cause of cancer death in children under age 20 now surpassing acute lymphoblastic leukemia (ALL), and are the third leading cause of cancer death in young adults ages 20-39.
• Brain tumors are the second fastest growing cause of cancer death among those over age 65.
• Brain tumors are the second leading cause of cancer-related deaths in males ages 20-39.
• Brain tumors are the fifth leading cause of cancer-related deaths in women ages 20-39.
• There are over 120 different types of brain tumors, making effective treatment very complicated. Worse, children's brains react so differently than adults that the same treatment is ineffective.
• At present, brain tumors are treated by surgery, radiation therapy and chemotherapy, used individually or in combination.
• Symptoms of a brain tumor can include headaches, seizures, cognitive or personality changes, eye weakness, nausea or vomiting, speech disturbances, or memory loss.
• The cure rate for most brain tumors is significantly lower than that for most other types of cancer.
• Brain tumor research is underfunded and the public, in general, is unaware of the magnitude of the problem.
• Currently, brain tumors cannot be prevented because their cause is still unknown.