Saturday, November 21, 2009
How do you do it?
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.
Friday, October 30, 2009
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.
Tuesday, October 27, 2009
growing and shrinking
"Oh..." he said "that's why you are so short."
watch it kid.....
Sunday, September 27, 2009
I don't want to hear about childhood cancer anymore!
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?
Monday, September 14, 2009
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
Tuesday, August 18, 2009
How is Jimmy doing?
Monday, July 13, 2009
Our healthcare system
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.
Tuesday, June 23, 2009
hitting the big 50!
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?
Wednesday, June 17, 2009
That's what you get when you send a blind kid to camp
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?
Sunday, May 10, 2009
I'd rather wear a macaroni necklace than pearls
Tuesday, May 5, 2009
The Wrath of an 8 Year-Old
It was one of those mornings that makes me glad that I'm a mom.
Thursday, April 30, 2009
My boy is a Star
In my opinion anyway.
Tuesday, April 28, 2009
My son gets the bird
Monday, April 20, 2009
Mindstorms competition
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.
Wednesday, April 15, 2009
Photo Tag
Here are the rules:
Take a picture of yourself right now.
No primping or preparing.
Just snap a picture.
Load the picture onto your blog.
No primping? I picture of me right now? *gulp* here goes...
Oh wait! it said "no primping", It never said "no photoshoping"...
so here I am after a little photoshoping, you know, just softening wrinkles, adding a little color etc.
I don't look all that bad after all.
Tuesday, April 14, 2009
Lessons from an Easter egg hunt
Wednesday, April 1, 2009
Getting my kid to sing
Last weekend was the cornerstone dedication of the Draper Temple. My fifteen year old was invited to sing with the youth choir way back in December and they have been practicing for it for every Sunday evening in preparation for this event. It was a great honor for him to be asked to sing, only 5 people from our stake were asked to sing. It was a once in a lifetime opportunity. They sang beautifully, It was absolutely fabulous! They sounded like a professional singing group or better. He was also asked to sing a duet at Jimmy's baptism and upon hearing him sing, the Stake president asked him to sing in a quartet for Stake Conference, and he has been asked to sing a solo in church.
I think he is finally starting to believe me now when I tell him he has a great singing voice.
Jimmy's Baptism
Jimmy got baptized on Saturday, he was so excited! His baptism was the day after his eighth birthday. I asked him if he was more excited for his baptism or his birthday; he said his baptism. I asked him why, after all he gets presents for his birthday, so why is he more excited for his baptism? He told me "A guy has a birthday every year but, you only get baptized once." he was so cute! I am so very glad he is still with us. 3 years ago we did not think he would make it. We are having his birthday party in a couple of days and he wants to invite the entire school , we'll see how it goes...
Tuesday, February 24, 2009
Thumb Sucking Addiction
Friday, February 13, 2009
All clear
Jimmy had a hard day: We had to check Jimmy out of school in the middle of his valentines party activites, then they had to do a couple of tries to get his IV in: that is the part he hates most, the blood draw & IV. He has quite a bruse on his hand from the first attempt. He actually cried but he held still, It is so hard to see him sitting there with tears in his eyes while holding still and being so brave. Then when we got to Medical Imaging for his MRI we found that the special goggles they have for him to watch movies on were broken and he would have to hold still for an hour and a half without a movie. He just loves the goggles, because of how his vision loss is he can see movies better with those goggles than he can on the TV or even in the theater. He was very disappointed by this time I could see tears welling up in his eyes again but he said he wanted to try to do the MRI anyway. He held very still during the first half he said he used his imagination to entertain himself he pretended he was in the army and the noises from the MRI were bombs and guns. After about fourty-five minuites they came in and told him the goggles just got delivered so he got to use the goggles for the last half of his MRI! It took one hour and fourty-five minuites and he held still the while time!
That little 7 year old boy is my hero!
Thursday, February 12, 2009
Crossed fingers...
Jimmy is doing a full brain and spine, with and without contrast so the MRI will take a very long time, he wants to do it without sedation: that impresses me. I have a hard time even sitting in the room when the MRI is going on, let alone hold still for the hour or so the MRI will take. I don't know how many other seven year olds would even want to try, especially since he will still have to get an IV for the contrast.
I'm praying for no more tumors, anything else I think I can handle.
Saturday, February 7, 2009
Getting chickens
This morning he said "I think we may have too many chickens"
Friday, February 6, 2009
I'm wierd
Monday, February 2, 2009
25 random things about me
2. I have never colored or premed my hair.
3. I love snakes, but I hate spiders.
4. I play Starcraft, but only with my kids.
5. I am incredibly uncoordinated I have never been good a sports.
6. We have 1 excessively energetic dog, 2 sweet little parakeets and 10 chickens.
7. I have the same middle name as my sister and my childhood dog
8. My sons tell me I am a cool mom, I’m not sure that is a good thing.
9. I am a terrible typist, even my kids make fun of me.
10. I love to wear bright colorful striped socks.
11. I am an artist but I have a hard time telling people that, It sounds so pretentious.
12.I love to spend time playing with my boys, talking to my boys, and hugging my boys.
13. I hate to talk about myself, but I don‘t mind speaking in public.
14. My 7 year old son is legally blind, and half bald as a result of a brain tumor and its treatment.
15. I always have my hair long so my son can recognize me.
16. I hate my sons MRIs they make me so stressed out.
17. I make jewelry and sell it to benefit brain tumor kids.
18. I think I am a good cook, but I am not so sure my family agrees.
19. Me and all 4 of my brothers have red hair, My sister is blonde, poor freakish Angel ; )
20. I love to read but I don‘t do it very often because when I start a book I keep reading until I finish it. Good thing I am a fast reader.
21. I am a terrible housekeeper.
22. I love learning. I try to learn something new everyday
23. I have a website: ArtistMelody.com.
24. I love vacationing with my family: I am just as happy camping as I am going on a cruise, as long as I am with my family.
25. Been very happily married for over 20 years, I sometimes can‘t believe my husband still puts up with me.