Another Rough Week for Children with Cancer

The holidays are bearing down on us and everyone is feeling the pressure to get ready for Christmas or whatever holy day they celebrate. I am not doing much of Christmas this year and it feels pretty good. We are going to visit our daughters and grandson in Hawaii so decided to forego big gift expenses except for Keawe and Malia. Malia who will be here celebrating with her godmother's family. Bless them for taking her in. But anyway, in preparation for being out of town I have been scrambling to organize the adoption, pick-ups and deliveries of 55 families with sick children--most with cancer. That number doesn't include those that Anne took care of for Mary Bridge children. So, we have definitely far exceeded our average this year. We were able to do this because so many generous people stepped up to help. It makes them feel good and their participation is helping families. Glenda R. an angel who works for the City of Bellevue asked if she could adopt a family... well, when we got to talking she offered to put out an intranet at work and ask for sponsors and drivers to help with picking up and delivering. OMG! Where had she been these last few years? It was so awesome. I have been able to organize all of these families, sponsors and drivers with time to spare. It helps take away some of the sadness. The stories I hear this time of year make me sad yes, but also renews my spirit about what Candlelighters Childhood Cancer Foundation of WWA is about. We help families 365 days a year not just at Christmastime. We help with food, gas, utilties, rent/mortgage, car payments, and sadly yes, funeral funds. We just helped with a two month old baby's expenses...and in the same week sent a little boy and his mom off on what will probably be his last wish. We help find housing when there aren't any other options - again, because of generous sponsors who believe in helping children with cancer. I applaud the social workers who work on behalf of these children - tirelessly and without much appreciation at times. I applaud the lovely folks who run the Ronald McDonald Houses and do it with heart. I really really applaud and appreciate volunteers! We could not do what we do without them. But there is a cautionary tale in here too...social networking is great in many cases but can be curse for some. This week I received six email pleas to help a family from out of the area. I jumped right in and did what I could. I contacted the social worker to let her know what was available through our contact. Well, the whole thing got long and drawn out. But, in unraveling the whole episode it turned out that they did not need the help that had been asked for by people who didn't even know this family and so therefore were not in the loop when it came to the latest information on his situation. The social worker wsa inundated with calls and emails from well-meaning people...she was already doing her job. Several well-meaning people took it upon themselves to call the RMH and demand services for a child whose name they didn't even know--- the RMH people had to track down who this family was that desperately needed their help and guess what? His family was already being served there and did not need the help. But my point is thse well-meaning folks caused a huge amount of unnecessary work -- took up a lot of people's valuable time and quite frankly should have stayed out of it. My friend Mary Anne who runs the Candlelighters in Spokane pointed out to me that social networking is good and bad. I agree but let's leave life and death decisions to the professionals who are trained and experienced at dealing with such crises. That's enough for now. Have a great day!

Sad Day

I have had one of the saddest days since 9/11. My dear friend and fellow jewel passed while I was in NC and today was her funeral. It was very nice but I was just so filled with sadness all day. I was also dealing with several sad Candlelighters' kids situations. It is okay to cry but I am afraid if I start it will be difficult to stop. My inner conversations today have been all about struggling to appreciate the good things that happened today...number one - it didn't rain...all day! number two -- I have my health...number three -- life is good for me for the most part... and I should be able to pull myself together....number four --I will get to see my daughters and my grandson in a few weeks. I think I will just go to bed early and trust that tomorrow will be brighter for me.

North Carolina Booksignings

Well, I had a terrific time in North Carolina last week. I got to see so many of my friends and several of Steve's relatives while there. My friend Carrie Hewitt and I flew out of Seattle early Thursday morning. It was fun to show her where I used to live, etc. My dear friend Art Howard picked us up from the airport...and then, we headed to downtown Raleigh for supper. He took us to The Pit a great southern cuisine restaurant where Carrie had her first taste of collard greens and Hush Pupplies--one of my favorite items. Then, we stopped by WRAL to leave my DVDs and a book for the producer. Ran into some friends there...Clarence and Dona. On Friday, I was interviewed on the Noon News at my old station WRAL-TV in Raleigh by a wonderful anchor friend Bill Leslie. It was a great opportunity to promote the booksignings in Raleigh and in Wilmington. I haven't been on that side of the camera is a great while and it was good practice. Talking with Bill made it so easy too. I was trying desperately not to say uh, um or any other filler words. I guess I did pretty well. My booksigning at Dancing Moon was fun...Joanie and Lori came right before it ended which was awesome cuz then we all went to dinner at The Point in North Raleigh. I had one of the best salads ever~! Saturday, Waltye, Carrie Hewitt and I went to the Seagrove Pottery Celebration which was a treat. Steve's cousin Ippie joined us as did Carrie's friend Peggy from Atlanta. She drove six hours to see Carrie. They had not laid eyes on each other for 27 years. It was sweet to see how they just picked up where they had left off. Peggy was a doll. Very sweet and such a pleasure to spend time with. I can see why she and Carrie have been such good friends. Waltye was a gracious hostess as always and it was special to get to spend so much time with her. On Sunday, I had brunch with Dan and Julie Oliver in downtown Raleigh while Waltye was directing her church's choir and Carrie had spent the night with Peggy at a hotel in Cary. Dan and Julie are so awesome...and FUNNY! Afterwards, I got back up with Waltye and we picked up Carrie and headed south. On the way, we stopped off in Fayetteville to see more of Steve's relatives, the Grannis family. Ed is the DA in Fayetteville...a job I cannot imagine. With two military bases there he has his hands full! and he has been the prosecuting attorney for many decades. That terrible case there last week with the little girl who had been pimped out by her mom and then murdered by the wacko who took her would give me nightmares. I am glad he has the disposition to handle such cases...someone has to do it. We made it to Ocean Isle Beach Sunday night and it was great. We stayed at The Winds which is owned by Carrie's friend Debra Hamilton. I got up the next morning and walked on the beach. It was great but it torqued my back and I paid for it later. I highly recommend The Winds. It was very nice and cozy. We spent one day toodling around Calabash shopping and eating fresh seafood with - you guessed it more Hush Puppies! Yummo. We actually drove over to the S. Carolina side of the border so Carrie could get her picture made with a South Carolina sign behind her. It was only about five miles from where we stayed. Then, we got to have breakfast the following morning with our hostess Debra. She is this tiny little Southern beauty and so generous! Loved meeting her. We all trekked on over to Wilmington. Waltye and I went to meet up with Steve's Uncle Charlie and his wife Betsy. I love their home it is so comfortable and just beautifully decorated. They are such a wonderful couple and so loving. They took Waltye and I out to lunch at a place on the riverfront in historic downtown Wilmington...called Elijah's. It was great to catch up with them. Then, they delivered me and my books to Two Sister Bookery in the Cotton Exchange. What a delightful bookstore! It was so quaint. It made me miss The Good Book, my old shop here in West Seattle. I had fun meeting folks and was invited to come do another signing the next time I am in NC, which might very well be next May or June when Keili wants her Pampa Ed to teach her how hang glide at Kitty Hawk. We will see... so anyway, after the booksigning we hit the road and headed back to Cary to rest up at Waltye's pack for our return trip home and for her trip to New Jersey to spend Thanksgiving with her cousins. Carrie and I spent part of our departure day with Dick and Margy King some friends of ours from when we lived in Chapel Hill. That was a treat. We spent most of the day at A Southern Season. WOW! a tiny little local gourmet food shop has grown into a megastore with delis, restaurants, over 100,000 bottles of wine, a chocolate section that was unbelievable, beautiful pots, pans, gadgets galore! It is amazing. We then caught our flights home and arrived just in time to get a few hours rest before Thanksgiving. Which brings me to the many reasons why I am thankful...for wonderful friends, family, good health, love, and beautiful memories of my son, parents, grandpa, Alycia, Michael and my newest angel friend Phyllis who passed away while I was in NC. She was and will always be a jewel in my heart.

Veterans' Day and Grief Issues

It just occurred to me how much grief surrounds Veterans' Day. I don't want to sound old but most young people have no idea what this "holiday" is about. If my dad hadn't been a paratrooper in WWII (most of his brothers served that war too)I probably wouldn't know or want to know. It is just plain sad when you think about how many lives are affected by wars or conflicts whichever description fits... I remember when my brother came back from Viet Nam...wounded...disillusioned...guilt ridden and for what? He told me that they kept fighting over the same piece of dirt. It didn't take long for the guys to figure out they were in a lose lose situation. My dad never really got over his war experiences. I am not sure my brother has either. He doesn't talk about it. I was once madly in love with someone who had PTSD from Viet Nam. There was no way I could continue the relationship once I realized just how bad off he was. What can we expect? You put a young man or some are even teenagers...out there with a gun and maybe the worst act of violence they ever suffered was on the football field in high school and how are they supposed to cope with the emotions of killing another human being or watching others be killed around them? Grief is a lifetime struggle for so many. I salute all of the young men and women who are in our armed forces fighting for our freedom but I really wish they didn't have to kill or be killed.

Booksignings in Raleigh and Wilmington North Carolina

I am heading to Raleigh next week and will be doing a booksigning at the Dancing Moon Books & Gift Store in Raleigh on Friday, the 20th from 4 to 7pm. Then, on the following Tuesday, I will be in Wilmington at the Two Sisters Bookery in the Cotton Exchange in historic downtown Wilmington doing a signing from 2 to 4pm. I am very excited and grateful to be sharing my book and especially Cory's wisdom with more people. I am also doing a signing and discussion at Celebration Conscious Living in Colorado Springs on January 23rd. Time tbd. I will be sure to update my blog when we get the times firmed up.

Past Present and Future

When people hear that my son had "out of body" experiences for a year and a half before he died they react in two ways... they either look at me like I have two heads or they are relieved to hear that there is an afterlife...a heaven or Summerland as Cory called it. I had the most incredible experiences myself recently when my friend April and I went to a picturesque little village in Western NY. It's called Lily Dale. It is an hour Southwest of Buffalo. The setting was wonderful. Beautiful trees and a serene little body of water called Cassadaga Lake. The buildings are original from when the village was built by people whose religion is called Spiritualism and they are called Spiritualists---130 years ago. The most incredible thing though was the history of this village and why it is famous. There are 44 registered mediums there between mid-June and Labor Day. I am telling you it was fascinating. In fact, I am trying to work out a deal to go back and do a television series on the place. Well, I won't tell you the whole story today but just know that when I think something is woo woo...it most certainly is. I got to have conversations with several friends and relatives who are in spirit...including my son Cory. I loved it. I bought a book about the village's history and you will not believe what happened???!!! The author made a reference to the spiritualists' version of heaven. They call it "Summerland." More next time....

Serving Pediatric Cancer Families & Healthcare Costs

Well, it is that time of year again. Our Candlelighters Childhood Cancer Foundation chapter does a holiday adoption program. We have averaged 55 families the last few years. This year because of the economy we have had a number of sponsors tell us that they do not have the resources to help us out. Unfortunately the sponsors for the local Ronald McDonald House and Seattle Children's Hospital Oncology Dept. bailed too. So, we will likely have a lot more needy families to serve. I have faith that we will get enough generous people who want to help...but it is worrisome. Many of our families have been wiped out emotionally, physically and monetarily just by the diagnosis and ensuing treatment costs. Even with insurance that 20% that is yours can devastate anyone. So many people do not have insurance at all. It is unfathomable to me that we live in a country like ours and have people who cannot afford their co-pays, medications, treatments, etc. I pray that President Obama can fix this problem and that insurance companies and medical facilities will have some of that courage to do the right thing that I wrote about in my last posting.

Courage

Having the courage to stand up and do the right thing is instilled in us from childhood. I think that courage is displayed in many ways. Standing up to bullies is one... bucking your peers and doing the right thing as opposed to the popular thing is another. Facing down a life-threatening illness with dignity is true courage. Some do it with flair while others do it quietly. If you have ever observed kids who are coping with cancer you know that they are usually doing it quietly but they are made of steel. I know many adults who have had cancer. Again, some handle it well others do not. I have never seen a child or teen patient do it badly. I especially am blown away by the young ones such as Cory who adapt and get on with it. They don't whine and fuss. They take their treatments like little soldiers and continue the battle. Then, they play. We adults need to be more like them.

"Take it or leave it" means freedom to share

Writing a book about your personal life is an intense process. It takes an attitude of "this is who I am, take it or leave it." Good thing I was born with that attitude. At least that is what it feels like after all these years. Back to my original point---laying yourself out there with all your warts and insecurities really does take guts. My naturopath told me yesterday that she is in the midst of reading my book and if she didn't already know me she would have thought I was way out there with what I wrote in Over the Rainbow Bridge, My son's journey... I chuckle now but in retrospect, I don't think Cory's experiences or mine for that matter were so unusual. Since the book came out I have had so many people share with me woo woo experiences they have had and had not told anyone before. Cory and I have given people permission to share things that they have long kept hidden because of the fear of not being taken seriously or not being believed. That is really pretty cool when you think about it. Feel free to share! Get it off your chest...Share it right here if you want. It will could you feel better.

Writing a blog takes some thought...yesterday I was shooting in Vancouver, Washington and didn't have time to think about anything but that. I created a fan page on Facebook the other day but now not sure what I am supposed to do with it. haha. I love technology but sometimes I feel like a dinosaur with a Bic lighter. I know, weird way of saying technology is great but I am of a generation that might be too mindboggled by it to know how to use it effectively. I will have to go ask my friend Erik Korhel. He is my "nudger" when it comes to getting with the program on promoting my book. I really need that.

Yesterday I was with a class from a challenge program. Gifted kids who were very impressive. They reminded me of Cory and his friends at the University Child Development School...long time ago. So gifted academically but not necessarily very adept socially. It was fun to be an observer. I am always so blown away by how hard it is to be a teacher. The teacher we were featuring was AMAZING. She had so much to do and so little time. She kept the kids clipping along -- I imagine so they wouldn't get bored because these kids are extremely bright...it made me wonder about regular classrooms where the kids are all at different levels of understanding and talents. Yikes! I will stick to television...so much easier. I salute all teachers!

Parents/Grief/Over the Rainbow Bridge/lessons

When I woke up this morning my head was filled with thoughts about my son, his lessons, how parents normally react to a child's death and what it meant for me. Here is what was swirling around in my head.

Most parents who suffer the death of a child let it define the rest of their lives.

Many are battered and broken.

Not me, I am in the survivor group – I started support groups, conducted grief workshops, revitalized a sagging non-profit and marched on Capitol Hill to tell lawmakers why research money is needed for children’s cancers.

And now, I have written an inspiring book about my son’s journey from a healthy happy three-year-old to the little teacher whose insights were hailed worldwide by famed ‘death and dying’ author and researcher Dr. Elisabeth Kubler-Ross…Seattle school children and also his friend, The Hoff.

Over the Rainbow Bridge (My son’s journey from here to Heaven) is a page turner that will crack you up with laughter and make you cry. The book chronicles the experiences shared by Cory from birth to crossing over the Rainbow Bridge to a place he called Summerland. It is not maudlin or sappy but honest and full of hope.

Cory counseled suicidal teens at his school. Kubler-Ross used his stories and drawings in her grief workshops where thousands of people learned from him. He taught me to live with a grateful heart…for having had such a wonderful child for nine years and for my many blessings.

Thoughts on children and dying

I was just searching the web and reading several blogs about grief, death and dying, etc. It is amazing to me how much is out there. Times have really changed so much in the last several years. It does my heart good to see so many sites.

It was also interesting to see several sites that had do's and don'ts about grief. I facilitated grief workshops for children and teens for 15 years for a local hospice and I learned so much from the attendees. Most of the rules I just read on-line make sense.

What I didn't see (it is probably there somewhere) is something that I always make sure to tell parents...children and teens do not grieve on the same timetable as adults.

In the case of either the loss of a parent, grandparent or sibling...and depending on the situation and how the parent/s are doing kids generally take their cues from the grown-ups. For instance, if dad died and mom is struggling to cope the child will wait out of fear mostly---the fear that if they put one more burden on mom she won't make it.Ao, the child is stuffing his or her emotions about dad's death and not getting the normal amount of attention from a struggling mom...double whammy.

Once mom starts doing better, then, the child starts to grieve. Oftentimes the mom doesn't connect the acting out, moodiness or grades slipping with the loss because it has been so long and she is feeling better. It takes even longer with teenagers. Be cognizant of your child's moods and behavior. And be patient...once they start to grieve you have to help them deal with their pain, their fear and their loss.

Kids grieve too.

My first post

Today I have been researching Spiritualist organizations who might carry my book. The idea to blog comes from my very talented author/poet friend Erik Korhel. We spent a very nice lunch the other day while in the midst of the revitalized Seattle Bookfest and he being several decades younger than me---gave me a serious pep talk about getting busy marketing my book via blogging, etc. Writing a book was easy compared to doing the whole business side of things.