christmas this year

What a busy December, it began with the death of one of my best friends, Suzanne, one of the most wonderful people I could ever hope to know passed away from Brest cancer. Then we had Jimmy's bi-annual "Brain Tumor fest": we saw 6 different specialists and had an MRI (stable *Yahoo*)spent two days at the hospital. We went to the festival of the trees, christmas caroling and the kids acted out the Nativity with thier cousins. We had 4 Christmas parties on the same day, and 2 Christmas concerts on the same evening, and managed to do them all. Two days before Christmas I sat down on a chair rather clumsily and ended up on the floor with a broken tailbone, it is a real "pain in the butt". We had a successful Christmas day and dinner, with no serious incidents. All in all we had a good Christmas I just wish I had time to enjoy it. And then it was my "favorite time of the year" I love the days between Christmas and Jan 2nd, with the kids home, the stress over, and all of my family from out of state visiting. The Christmas season is over, for me the season ends on January 1 which is one of my favorite days of the year. we try to take the tree down in preparation of the birthday parties soon to come, and then about noon or so all the fun begins, All of my siblings families head over to my parents home for "game day" where we all bring any leftover Christmas goodies and just sit around playing board games and visiting for hours on end.

Sometimes I think I would like to "skip" Christmas. Just until Dec. 26th though, I don't like the stress of Christmas, and some of the memories associated with it, but I'll keep doing it for my kids and hubby, as part of my gift to them. someday years from now when my kids are grown and my bad memories are distant and layered with new memories then I can "skip" Christmas but, by then I hope I won't want to anymore.

How do you do it?

I was recently asked the question "When you think about all that your child and the rest of the family is going through, how do you do it? How do you stay so strong?"

First of all I don't think what we have been through is anything that amazing. EVERYONE has crap in their life, If you're sitting there thinking you've had an easy life, don't waste your time feeling left out, 'cause you'll get your share sooner or later. Just know when things get tough that everyone has tough times and they don't last forever.

How do we do it? Hey, It's not like we were given a choice, we just accept what life gives us and do our best with what we have. That's how life is, it is full of crap, it is also full of beauty, you can choose to focus on the crap or the beauty. It is all up to you. I have a friend who has been fighting really bad breast cancer for 2 years she is always upbeat and happy. She told me last week "It is far more enjoyable to be happy than it is to be sad." I guess that sums it up for us, we choose to be happy, and that makes us strong.

Raingutter Regatta

Jimmy took first place in the Cub Scout Rain gutter Regatta this year. I was very proud, mostly because I was the one that helped him build the boat. Every year when it comes to "Derby" time for the past 10 years I have helped my Cub Scout sons build race cars, or sailboats, whatever they are racing that year, all of them have been a dismal failure in the racing department. I must say some of them looked really good though. I finally made one that not only could finish the race, It was actually fast.

I'm sure he fact that we had the boat finished a week in advance and Jimmy practiced "sailing" it everyday had nothing at all to do with it though. Ok, ok Jimmy was the one responsible for winning all the races. There was one competitor that was quite close, they had to re-race three times, the first two races were a tie. When I asked Jimmy why he had a harder time racing that boy he told me that when he had to race from the right side of the rain gutter he could not see the sail to blow on it. Oh, yeah, He is completely blind in that eye! Another *duh, mom* moment, I made sure he was on the left side for every race after that and he always won by a wide margin.


Jimmy was in heaven! he had been eagerly awaiting the day he could participate in one of the Cub Scout derbies for as long as he could remember and he finally got to race in one. He was having so much fun that he didn't really realize he took first place until they gave him the certificate at the end.

growing and shrinking

Little Jimmy asked if me I was the "baby" of my family... I replied that I was second to oldest that his uncle Bruce was by far the youngest. Jimmy got a puzzled look on his face and said "Bruce can't be younger than you, mom, he is too tall." I explained that adults stop growing when they get to be 18 or so so height isn't exactly a good judge of age in grown-ups, I then added sometimes when you get really old you can even shrink a little.
"Oh..." he said "that's why you are so short."

watch it kid.....

I don't want to hear about childhood cancer anymore!

September is childhood cancer awareness month. *blah blah blah*

I have been telling people about childhood cancer, and quite frankly I am sick of it. I am sick and tired of "childhood cancer awareness" month. I am so weary of thinking about childhood cancer. I just don't want to do it anymore: it is too depressing. I don't want to think of all the sweet children that are suffering and all the parents that are grieving. If I ignore it maybe it will go away. If I just pretend that children don't get cancer, perhaps Jimmy will grow his hair back, his vision will return and he wont have seizures or learning disabilities anymore. If I don't think about the little children dying perhaps they just won't die. It is just too ugly, depressing, and painful to think about, so I won't acknowledge it, and it won't exist.

Unfortunately, However much I may wish to ignore it, the reality is that children die from cancer. There are children dying right now. 3,000 children will die of cancer this year. Cancer is the #1 cause of death from disease in children in the U.S. Only 3% of cancer research money goes toward childhood cancers. Chemotherapy and radiation are far more damaging to developing little brains and bodies than it is to adults, but, ONLY ONE new cancer drug has been approved for pediatric use in the past 35 years!

Did I mention that September is childhood Cancer Awareness month?

September is Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month and September 12 is Childhood Cancer Awareness Day

Here are some things you can do this month (and ALL YEAR ROUND, for the most part!) to support Childhood Cancer Awareness. None of these things involves any financial burden of any kind (except for eating at Chili's ... but hey, ya gotta eat right??)

Tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer.


Donate blood: givelife.org


Dine at Chili’s on September 28, 2009, when they will donate 100% of profits from restaurant sales to St. Jude Children’s Research Hospital: createapepper.com


WEAR GOLD FOR THE KIDS: cafepress.com/teamunite


Register to become a bone marrow donor: marrow.org


Offer to volunteer at a local childhood cancer center.


Join Team Unite to become part of a unified voice against childhood cancer: teamunite.net


Join People Against Childhood Cancer (PAC2) to learn of efforts being made around the country to find a cure, raise awareness, and lend support: curechildhoodcancer.ning.com


Let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles.


Let a family of an angel know their child remains in your heart.


Sign the CURE CHILDHOOD CANCER petition (and ask your friends and family to sign, as well!): thepetitionsite.com/1/CureChildhoodCancer
Download a poster version of this list! http://teamunite.net/pdf/TeamUnite_SEPTEMBER.pdf

How is Jimmy doing?

It has been 4 years since my life changed. It has been 4 years and 4 days since Jimmy's brain tumor diagnosis, 4 years and 3 days since I sat on the floor and cried uncontrollably outside the ICU after Jimmy's first surgery when we were told Jimmy probably would not make it. It has been 4 years and one day since the doctors miraculously were able to remove all of Jimmy's brain tumor. I have lots of people ask me how he is doing. Jimmy is doing fine! he is mostly blind, half bald, has learning disabilities, and he has partial seizures almost daily. I'm sure many people would not think that that is fine, but to us it is part of our "new normal" life that began 4 years ago. Jimmy is fine, he is an alive, happy, energetic 8 year-old now. How could I ask for more than that? We adjust, and life goes on in our "new normal" way, we have learned not to take life for granted, little things don't matter, we treasure our time together a little more. It has been four years since our lives changed, and we're doing just fine.

Our healthcare system

With the recent debate about health care I thought I'd share a few of my experiences.

Health care in America vs health care in Canada:
We recently were in Canada on vacation when Jimmy started having facial seizures and paralysis on the right side of his face. He had three incidences in one day. His brain tumor was on the left side so this could be a tumor re-occurrence. We called his oncologist and we were told to take him to the E. R. and get an MRI. We went to the E.R. at B. C. Children's Hospital. (the first hospital E.R we went to told us that they do not treat children.) There were only a few other patients there so we received prompt medical attention. After 2 hours of giving 4 different people his complete medical history we finally saw a the doctor, It turns out they had to wait for the Dr. to get there, because of a shortage of Dr. shortae in Canada there was no Dr. in the E.R.! All the doctor did was tell us that they could not do an MRI for us because "We only do those when they are medically necessary" Hmmmm..... Just what do they consider "medically necessary"? and it would take at least 2 weeks to get an "emergency CT scan" even though we told them Jimmy shouldn't have CT scans because of all the radiation he has received and brain tumors do not show up very well on CT scans. The doctor advised us to go back to the US to get a scan. We arrived home at about 7:30 pm and received an MRI the next day. (it was "stable" no tumors.)

We were told it cost $896.00 just to see Jimmy at the Canadian E.R. and anything they do there was an additional charge. Haven't received the bill yet. Hopefully our insurance will cover most of it. That is about the total of the MRI cost in the US. I like the medical attention we received in the US better than in Canada.

Jimmy at BC Children's Hospital Canada. We got to see first hand the way socialized medicine is practiced with our neighbors up north. Yes, those are diapers on his hands. If they were going to draw blood, they wanted warm (swollen) veins. They didn't have heat packs like they use in our hospital here.

About cost:
After Jimmy's third brain surgery we received a bill from Jimmy's neurosurgeon for an office visit and his surgery: the office visit was billed at $150.00 and we were with the doctor for about an hour, the surgery was billed at $8,000.00 per hour! Lets see... that is $7,850.00 per hour more for surgery than an office visit. Not that I am complaining! This is a top neurosurgeon that saved Jimmy's life and he was well worth the money. I would gladly pay $16,000. 00 for his surgery, however the insurance company paid it. When we saw the neurosurgeon a week later I jokingly said I knew how he made his money and mentioned the bill. He told me he actually makes the same amount of money rather he is in surgery or in the office, the difference in cost was malpractice insurance. Let's see that one 2 hour surgery cost about $15,700.00 for malpractice insurance, that cost was passed on to all of us insurance policy holders through higher rates. Yes, I really do think there needs to be some reform in our malpractice lawsuits.

hitting the big 50!

I just hit 50! What? I don't look a day over 45? Well that because I'm not even 44 yet. Just how old do you think I am??

I was talking about my weight. I have lost over 50 pounds. The numbers look good on paper but, I still don't feel any different, just less embarrassed by myself. I have gone from repulsive to average. But still 50 is a pretty good milestone don't you think?

That's what you get when you send a blind kid to camp

Jimmy went to camp Hobe last week and he had an absolute great time, he left very sad because it is his last year to go to Camp Hobe. When we got home and unpacked we found his suitcase was very full of very dirty clothes, unfortunately they were not HIS dirty clothes: there was a blanket, 3 pairs of pants, three shirts, a jacket and a pair of shoes. He was missing about the same amount of stuff. I know that Jimmy is inclined to losing things because of his bad vision so I made sure to write his name on all his stuff so hopefully he will get it back. Unfortunately there were no names on the orphaned clothes he brought home. We took them back to camp and hopefully they will find a home.

All in all Jimmy bringing home the wrong clothes was not totally unexpected, after all he is a legally blind 8 year old but, I wonder what was the other kids excuse was?

I'd rather wear a macaroni necklace than pearls

Fragrant Memory 8x10 watercolor

I'd rather wear a macaroni necklace than pearls. A woman who proudly wears a necklace made of macaroni makes a bold fashion statement, a macaroni necklace says a lot about a woman. It says I am a mother, a child loves me enough to make me this necklace themselves, and I love them enough to wear it. I have proudly worn macaroni necklaces more than once. My children are now past the macaroni necklace stage. They are doing that dreadful thing all children do, they are growing up. I do still get other beloved handmade gifts from my children, This Mothers day I got a home made story book and a flower pen, my oldest boys bought me wonderful gifts, and my mothers day breakfast in bed was actually delicious this year. I am enjoying my sons gifts but, I'll still look forward to the day when hopefully, I'll have the chance to wear a necklace made by a beloved grandchild. Until then I'll be a little envious of any woman I see wearing a multicolored macaroni necklace.

The Wrath of an 8 Year-Old

Jimmy was mad at me this morning so he stepped on every crack he could while I was walking him to school. I of course, yelled out *OUCH* and grabbed my back with every crack he stepped on. By the time we got to school we were both laughing and Jimmy had decided that just the cracks that ran right to left would hurt my back, cracks running front to back made my back feel good so he could repair my poor broken back.

It was one of those mornings that makes me glad that I'm a mom.

My boy is a Star

My 15 year old son is the star of his Jr. high school play...

He did such a good job. He was in the play "Annie" he played the part of Sandy, Annie's dog. He really is a very good actor in all the plays he has been in he has always had a major role. I was very surprised when they cast him as the DOG! The boys who were cast as "Rooster" and "Daddy Warbucks" rubbed it in quite a bit. I believe he was a little insulted but, he decided he was willing do do the part. I thought that was very impressive, especially because he also took the risk of being ridiculed by the students at school for playing the part of a dog. But he did it wholeheartedly and he did a wonderful job. He received several compliments, several even told him he stole the show!, and he really enjoyed doing it. I am very proud of how well he acted and sang, yes they did have him sing a little, and I am proud of him for doing it at all.

My 15 year old son is the star of his Jr. high school play...
In my opinion anyway.

My son gets the bird

My oldest son just "got the bird".

He has known since he was a little tike that he would not get his drivers licence until he got his Eagle Scout award. He is well past his 17th birthday, he has had his Eagle Scout project completed for over a year, he just had some forms to fill out and turn in.

He finally did it! he is, as of Sunday, an Eagle Scout.

He still does not have his drivers licence, it turns out that he does not want his drivers licence. He does not want to pay for gas and insurance. I informed him that as of June 1st I will not drive him around anymore. I understand how he feels. I never wanted a drivers licence either, my Dad had to trick me into getting my drivers licence. Nonetheless I am very proud to be an Eagle mom. I thought I might never be the mom of an Eagle Scout. Now I need one of those" proud mom of an Eagle Scout" bumper Stickers.

Now I need to get my 15 year old to "get a life"

Mindstorms competition

On Friday, my 17 year old and two school mates entered the ITT 2009 Mindstorm Robotics competition. My son’s team entered the “King of the hole” contest. They built and programed a robot to find and drop 15 randomly placed paper cups into a hole in the center of 10 foot round arena, without the robot the robot falling into the hole. Out of 25 teams from 3 different School districts, my son's team took 1st place! Each team got three tries to get the robot to drop the cups in a three minute time limit, they did it every time. No other team even dropped all of the cups!

The team had to build the robot and program its moves. Once started, the robot ran on its own, no remote control. It has 2 light sensors to detect the hole, and two ‘push’ sensors to see if the robot runs into a wall.

My son said, “The other two guys built the robot, but I programmed it.” He was even interviewed for the news. Of course they did not use that footage. But they did use lots of video of his robot.

They had 2 weeks to work on it, and their School, Jordan Academy of Technology, pretty much swept the competition and took top honors.