Melody's Doodles

I can see clearly now...

2012-01-31T09:58:00.002-07:00

I find that when I get ready for the day and look at myself in the bathroom mirror that I like he way I look much more before I put on my glasses. Not because my glasses make me look bad but, because they make me see better.

Just a reminder...

2012-01-28T11:55:00.001-07:00

Do your best and let God do the rest.

just a little worried.

2012-01-25T19:36:00.007-07:00

I really think I am loosing what ever is left of my tiny tiny little mind. I have been so extremely stressed out about Jimmy's upcoming surgery I can barely function. I can't think straight I'm cross all the time. AAaaaggh!

Part of me just wants it done NOW and for it to be over with so I can stop thinking and worrying about it, the other part of me NEVER wants it to be done. I mean it's 2 BRAIN SURGERIES, 2 Stays in the ICU, and at least 2 weeks in the hospital for Pete's sake! How can I do that to my Kid? to my family? But, then on the other hand it is our last hope to get rid of Jimmy's seizures, It would be heavenly for him to go even one day without a seizure. And the doctors tell me every time he has a seizure he could be causing some brain damage and he is having 3 or 4 seizures a day lately. But, then on the other hand they are REMOVING PARTS OF HIS BRAIN!! does that sound like a good idea to you? I don't think so. But the doctors are mostly kind of sure that he won't suffer bad long term effects of the surgery, they think,... except his vision, he may lose some more of his vision, what little he has left. So I have been just one little teeny weeny little itsy bitsy bit STRESSED OUT!!!

So, I got a call yesterday from his doctor asking if they could delay the surgery one more month AAAAaaaaghhh.

NOPE.

something good everyday

2012-01-23T09:23:00.001-07:00

It's not always easy but I'm gonna try to find the good in everyday. I made this sign as a reminder to myself.

appetite

2012-01-16T09:57:00.000-07:00

I made Jim a sandwich for lunch yesterday, he ate it, said he was still hungry and asked if he could have a bowl of cereal. I told him he could have one bowl. A few minutes later his older brother went into the kitchen and started laughing: there was little Jim hunched over a mixing bowl full of cereal and eating it with a serving spoon. He looked up innocently and said “what?” yep, he ate the entire bowl of cereal. I don't think he will be little for long.

Have Yourself a Merry little Christmas.

2011-12-19T21:34:00.001-07:00

It's beginning to look a lot like Christmas... Come on Sing it with me.. Glistening once again With candy canes and silver lanes aglow... no snow here for Christmas yet, ..I'm dreaming of a brown Christmas... But, Christmas starts in your heart, not out the window, so I'm gonna just get myself a nice cup of hot cocoa and a cookie or two, read Luke chapter 2 and listen to some Mormon Tabernacle chior Christmas music. Because... It's beginning to look a lot like Christmas, Soon the bells will start, And the thing that will make them ring, Is the Carol that you sing, Right within your heart.

Have a fantastic Christmas! make some good memories, make this Christmas one that will stand out in your memory for the rest of your life, and make sure they are good memories. Do something you are proud of, something you want to write home about. Do what you can to make Christmas better for those around you. YOU have been given great blessings, go out and share them....
And Have Yourself a Merry little Christmas now.

letter to the world from a missionary mom

2011-12-12T12:18:00.002-07:00

My oldest boy just left on a mission. I really want to pin a note to his shirt...

Dear World,

This is my precious boy, please be kind to him because he loves you, he loves you enough that while other youing men his age are going to college, dating and partying he has volunteered to forgo all that, spend his life savings and dedicate the next two years of his life to bring you a gift. This gift is a simple message and a knowledge of something so wonderful that it has made his life better and given him peace and joy. All he wants to do is share this with you. You may choose to reject his gift, that is your choice, he knows that. But, how will he know who wants this gift if he doesn't ask? So if you are not interested in what he so lovingly offers just smile and say “no thank you” you really don't need to be mean or rude to him, Is being kind to someone who loves you so much such a bad thing to ask? So as a favor to me, his mother, please be kind to him?

With Love

A Missionaries Mom,

Melody

Jim's choice

2011-12-06T12:48:00.002-07:00

We told Jim he would have a vote in the decision on weather or not to have the surgeries to help his seizures. We thought it would be wrong to force him to have the surgeries. We went to the doctors to talk about it Friday, at the appointment Jim was saying “no way I don't want any more surgery.” He didn't even want to talk about it, he would get upset if we even suggested talking about it, so we told him when he was ready to discuss it to let us know. Well last night, just before bed, he said he wanted to talk about it, he wanted Dad to make a list of the pros and cons and we talked about it and prayed about it and Jim decided that he wants to do the surgery. So this morning he woke up at 6am wanting to know if we had scheduled it yet. He just wants to do it right away. I do feel better about having the surgery done but, it probably won't happen for a few months because of the doctors and hospital scheduling.

Decisions, Decisions...

2011-12-01T22:13:00.002-07:00

We get to make a really tough decision tomorrow. Not one I'm looking forward to . We need to decide weather or not to have Jim go through 2 more brain surgeries that would hopefully make his seizures stop. *ugh* how do you make a decision like that, how much input do you let the kid have? His other brain surgeries he was too young to really understand and the decisions were no brainers, (no pun intended) he was 4 and it was either surgery or die. Now Jim is back up to 2 or 3 seizures a day, he was having 6-12 a day this summer so three seems pretty small in comparison. In fact it seems downright minor compared to what he has been through, unfortunately the seizures seem to be increasing again even though we have been increasing his medication. So if he says he'd rather have the seizures than the surgery do I let him have the final word? Is 10 years old too young to make that decision? If he really wants to not have surgery and we think it best do we force him to do it?

2011-10-16T17:05:00.002-06:00

Stuart and Ben finally got home at 9:30 they won "Best Game Play" (they didn't award 1st 2end etc this year, they awarded best music, best graphics etc.) Stuart & Ben were happy with that Stuart said that it was just the same as first place, I'm not sure the guy who did the graphics or the girl who wrote the music would agree.

Stuart and Ben finally got home at 9:30 about 36 hours after they left Friday morning and then we had to go back to the Expo Center. Stuart was so tired that he FORGOT his computer and left it there, Luckily it was still there...

Cheater Cheater

2011-10-09T20:56:00.004-06:00

I received a letter in the mail from Jim's School it was a note from the school nurse. They had a vision screening at school and they are very concerned, Jim's vision test showed he has 20/100 vision in the left eye and 20/100 in the right eye. I wish! Since his brain tumor his vision has never tested better than 20/200 in his left eve and he can't see at all in his right eye. He usually tells them he "doesn't see very well in one eye," they will check his left eye first and assume that is the eye that he does not see very well from. Then they check his right eye and freak out. He must have cheated on his eye test, he frequently cheats on eye tests. I'm not sure how he cheated but he has cheated on eye exams before. He usually peeks with his "good eye" or tries to sneak closer to the eye test. I do find myself hoping that the schools eye test is correct even when I know it can't be. We were told his vision would never improve and we just had Jim thoroughly checked out. Isn't it silly that one incorrect eye test that I know is wrong can still get my hopes up?

I just wonder why I got a letter from the school that knows my kid is legally blind telling me my child has less than perfect vision.

halloween costumes

2011-09-28T22:01:00.007-06:00

I always have made my kids Halloween costumes. I started doing it because my kids always seemed to want to dress as something that they didn't sell costumes for, now I do it because it is cheaper than buying. Some costumes I have made are a zebra, roadkill, a harry chested pirate, Captain Hook, a duck, and the tooth fairy. This year Jim wants to be a storm trooper because he bought a toy gun that looks like a storm trooper blaster. I'm not sure I could make a good storm trooper costume so in an effort to talk Jim out of the storm trooper idea I pointed out that: he couldn't take the gun to school, I probably couldn't make a good storm trooper costume, and He couldn't wear a mask, and to really look like a storm trooper he needs a mask. Then I said "why don't you try to think of something else" so he come back a few minutes later and says "I Know what I'll be instead of being a storm trooper,.. I'll be Luke Skywalker disguised as a storm trooper"

We spent a month at the hospital last week

2011-09-25T22:03:00.006-06:00

It was Jim's MRI and brain tumor clinic one day and his Epilepsy Clinic the next day. It wasn't really a month we spent at the hospital but, it sure seemed that way. Jim got an IV, blood work and a blown vein. He had his hearing tested in audiology, He had an MRI and X-ray done, we went to Brain Tumor Clinic and Epilepsy Clinic and endocrinology, and saw what seemed like every doctor on the planet, although Jim assured me that that wasn't actually true. at one time I found myself explaining to the Brain tumor clinic coordinator why Jim sees 2 neurologists, 2 neurosurgeons and 2 neuropsychiatrists (one of each specializing in seizure surgery) and 2 ophthalmologists(one is a neuro ophthalmologist) then she said "and only one oncologist?"

The results? all good...
-Stable MRI!
-No endocrine issues, His endocrinologist keeps thinking there is a problem with his pituitary, but his levels always seem to be fine this time, and surprisingly no thyroid problem yet.
-His bone age test showed that if everything goes well he should be "average" height when he grows up. Average is very good all of the rest of us are "below average" height.
-Hearing is good, no radiation damage there either.
-No new concerns in any other areas!!!
-They were going to schedule his surgeries for his seizures but, he is down to 1 or 2 seizures a day, they want us to increase his meds even more (he is at a full dose for a child) to see if we can get full seizure control. We will meet again in December to see how he is doing. No brain surgeries makes a mom happy!

Wooo Hooooo!

wonderful life

2011-04-03T07:29:00.001-06:00

Jimmy wrote me a letter a few months ago, I keep it by my desk as a reminder.

Dear Mom,
Thank you for being so caring. It is so nice when you make me breakfast. Thank you for being so nice. You have made my life wonderful.
Love, Jim

It is nice that he is thanking me, and I am glad that he likes the breakfast I cook him, But the best part is the last line "you have made my life wonderful"

humm....lets see the poor kid is legally blind, suffers from 6 to 8 seizures a day and he thinks his life is wonderful !
Perhaps I should stop complaining about all the little stuff that I think makes my life difficult, and start enjoying my wonderful life.

more Jimmy seizure updates.

2011-03-27T18:55:00.007-06:00

Well the epilepsy surgery board doctors met they decided that Jimmy did look like a promising candidate for seizure remediation surgery. They sent us off to have more testing done. We did a long day of Neuropsychology testing and they wanted some visual field testing, both doctors had cancellations so we got the tests done right away. Unfortunately, the epilepsy surgery board won't meet again until the first week in June, me and Jimmy will be there to discuss things further with them. They are talking about a two part surgery where they open his skull and lay a "mesh" on his brain to see exactly what parts of his brain do what, they will leave it there for approximately a week and then if everything looks good they will go back in and remove the places that the seizures are coming from.

Jimmy's Seizure update...

2011-02-06T19:18:00.012-07:00

Jimmy's seizures keep getting worse He started having seizures about a year and a half ago, They started on the right side of his face and lasted maybe 10 seconds he had about one a day. Then last spring they suddenly started getting dramatically worse, now the seizures involve his entire body and last a minute or two and can take 2 to 20 minutes to recover from. He has fallen down stairs, dis-located his elbow, sprained his wrist, broken his glasses and acquired many bumps, bruises and scrapes from his seizures. He is currently on 3 seizure medications, none of which work, we have tried many others and, only one seemed to work: he was down to only two seizures a day while he was on it however, It also made him very sick, he lost almost 15 pounds and threw up everyday in the 3 weeks he took it before I had them take him off it.

We are now testing Jimmy to see if they could do surgery to remove the part of his brain his seizures are coming from. He stayed in the hospital for an "Extended Visual EEG" in December. After 3 days and 14 seizures they sent us home 2 days early because they had enough seizures recorded. The only thing that they could tell us from that testing was that the seizures were originating from the left side of his head, *ugh* . Thanks, but we already knew that! A couple of weeks ago we did a MEG (Magnetoencephalography). we had to keep Jim up all night the evening before the test. He was really excited to pull his first "all-nighter" about 1am he decided staying up all night wasn't that fun after all and by the time we got there for the testing he was very angry with me for keeping him awake. They took about an hour getting him ready for the test and he kept falling asleep sitting up while they were gluing electrodes to his head. He did sleep just fine during the test, I still feel a little sleep deprived though. The results from his MEG showed "lots and lots and lots and lots" (the doctors words) of excess electrical activity and that there are two separate places in his brain that are causing the seizures, so there are 2 parts that they would have to remove to stop the seizures, but surgery looks "somewhat promising" our next step is to get a bunch of neurologists, neurosurgeons, and other fancy titled doctors together to look over all his information to see what they they think our next step should be. It could take months to get all those doctors together for a meeting. so for now we Just wait and wait and wait....

Letting your kid be a kid

2011-02-05T21:21:00.005-07:00

I let Jimmy ride his scooter today, I made sure he wore his helmet and then I stood there and watched him zoom up and down the street with fear squeezing my heart, I was so worried he would have a seizure and end up face down sliding across the rough asphalt. But he had so much fun. Jimmy got his scooter a year ago for his birthday, I figured it was safer than a bike for a kid who was legally blind. He loved his scooter, he rode it every single day and then the seizures got worse, they went from being just on half his face for a few seconds each day to his whole body being involved 5 to 7 times a day. So I quietly put the scooter away. He asked me yesterday if he had enough money saved to buy a scooter and so I told him we still had his.

Yes, it would break my heart to see him hurt himself again when he has a seizure, but, it also hurts to tell him he can't be a kid and do all the stuff a kid wants to do. Where does a mom draw the line between trying to keep her kid safe and letting him live as much a life as possible. Yes, I have nightmares about him having a seizure and seriously hurting himself or worse. But, I also don't want him growing up without a childhood or with anxiety, constantly worrying about hurting himself. So I continue to walk the line and worry about if I'm doing the right thing.

The Death of a Minivan

2010-11-17T08:42:00.005-07:00

I proudly drive a 1998 dinged up minivan... well, maybe not that proudly. It has been a very reliable vehicle so I have been trying to make it last for another 2 or 3 years when I figure we won't need a minivan anymore. It wouldn't start Sunday, I thought that perhaps the light was left on. We jumped it Sunday and let it run for a few minutes. It started just fine after that. I was taking it in for an oil change anyway on Monday morning so when I brought it in I asked them to rotate the tires, check the battery and do the oil change. 45 minutes later I was told that it needs new tires, and the lug nuts were so rusty they did not think they could remove the tires to rotate them with out replacing some lug nuts at $20 to $30 each. Since it needs new tires anyway perhaps I should wait and just replace the tires instead of rotate them. Oh and by the way, it also needs about $450 dollars in repairs. So lets see... $400 new tires+ $450 repairs + $200 the windshield it also needs... I told my husband that if it ever needed more than $1000 in repairs we should get a new car. I don't want a new car! I hate car shopping and We REALLY don't need to spend the money right now! So I left very depressed.

I ran some more errands after that. When I got back to my van it wouldn't start. It would not even crank a little. So I was going to have to jump it. However, the van was parked very close to the car in front of it. I couldn't walk to the front and reach the hood release latch. So I'd have to push it out of the parking stall, up hill, to get access to the battery to jump it. The person who parked on my left side had parked so close that there was no way I would be able to push the van with the door open to steer it and push it at the same time. Ugg! I sat there and said a little prayer and when I was done the lady parked in front of me got in her car and drove off. I quickly put my van in neutral and rolled forward. I finally was able to get it jumped and drove straight back to the auto shop where I very politely asked them if they checked the battery they didn't know so they checked it again "It has a charge now but that doesn't mean it will hold a charge for long. The battery is 4 years old, probably time for a new one for $100. Oh, and by the way your tire looks low let me fill it. "

I returned home stressed out and depressed and tried to get some house work done. When my husband came home an hour later he discovered the van had a totally flat tire. Me and my husband spent over an hour on our hands and knees trying to change the tire. Remember the rusty lug nuts?

We got the tire patched and a new battery, but, it looks like we will probably need a new vehicle. I messed up my bad knee and did something to my shoulder trying to help get the tire changed. I guess I am getting to be as old as the minivan. Should we replace me when I get too expensive to repair?

update on Jimmy

2010-11-13T16:24:00.004-07:00

Jimmy has seizures, lots of them, all the time. It's one of the many fun side effects of having a brain tumor and brain radiation treatments. (radiation, the gift that keeps on giving) He has been having between 4-8 seizures a day. We have been trying every medication in the book to try to stop the seizures he is currently on 3 different medications for his seizures. He is also going through precocious puberty and the doctors think the increase in hormones may be contributing to the seizures, so now Jimmy will be taking Lupron injections to stop the puberty.

A few weeks ago Jimmy started a new medication to try to stop his seizures. the day after he started the medication he also began complaining of a tummy ache, so he has been throwing up every other day for a couple of weeks, he even felt too sick to go trick-or-treating. At first I thought he had a stomach bug but three weeks later he is still sick. So now I am thinking it is his new medication. However his seizures have also decreased to only 2 a day; So would he rather feel sick all the time or have seizures? Ugg.

Jimmy is scheduled to stay in the hospital for 4 days do a VEEG to see if they might be able to do surgery and remove the part of his brain that is causing the seizures. So do I hope they can do surgery and remove part of his brain or do I hope thay say that they can't?

It's all good

2010-10-10T20:51:00.001-06:00

my 19 year old goes around saying "It's all good" I think he means it as I'm alright or no thank you. But it got me thinking.

One night My husband asked Jimmy "if they could do an operation to make your eyes work would you do it" I cringed: there is nothing we can do to make Jimmy's eyes better I don't want to get his hopes up. But, Jim's answer surprised me, he said "no, then I would not be who I am."

I remember sitting in the hospital alone while I was waiting for Jimmy to wake up from sedation after one of his daily radiation treatments, I had LOTS of time to think. I was thinking about my little brother who is deaf and what an incredible young man I thought he was. I thought his struggles with his deafness probably had a large part in moulding his character and making him such an amazing individual. I hoped that Jimmy would turn out to be of such strong character; maybe Jimmy's "visual impairment" would help build his character in a similar manner. If I had a choice to have my son with perfect vision but unhappy and of poor character or have him be visually impaired but, happy and of strong character what would I choose?

Well it's not my choice. But, it seems to me that in the end if we go through life with the right attitude the trials help to make us better in ways that we otherwise wouldn't have been. Life builds us in unexpected ways. In the end I guess "it's all good" after all.

Siezures

2010-09-25T15:30:00.001-06:00

Jimmy had a seizure last week, well actually he had a lot of seizures last week, he has anywhere from 5 to 8 seizures a day, but that is "normal" for him. But, last week when he had a seizure he was sitting at his computer desk, his arm went forward and got caught in the keyboard drawer and then he fell off the chair. He dis-located his elbow. Recently he has also had a seizure at the top of the stairs, and fallen all the way down the stairs, he had had seizures where he had fallen so hard that he bloodied his knees, had seizures where he went face down in his bowl of breakfast cereal, I worry he could have drown in his breakfast. The poor kid can't even shower or take a bath alone. It is so frustrating! nothing we have done seems to help we keep trying all these different medications and he just keeps getting worse. If Jimmy is sitting down he usually won't fall over, so I find myself not encouraging him to do any physical activities, What Kind of life is this for a 9 year old boy? He used to be aware of what was going on when he had a seizure but, now he is only "aware" about half the time. Sometimes when he has a seizure I just sit on the floor holding him and crying.

Pity Party!

2010-07-27T12:42:00.004-06:00

I'm having a party and you are all invited!

I'm having a pity party: I'm going do nothing but sit around and feel sorry for myself. You can come and sit around feeling pathetic with me. We can sit in a circle and tell about how rough we all have it. We can listen to each others woes and complaints. I can picture it now in my mind, first someone will tell of their chronic pain and their spouse out of work, then another will tell of the impending death of a spouse fighting cancer, another mom will express the agony of their child's death and then when it comes my time to complain I'll feel rather small and ungrateful complaining about the health problems of a my son, whom I still have with me, or the job my husband still has, or my relatively healthy body. So I'll just smile meekly and offer everyone a cookie.
See, I feel better already.

One more day

2010-06-15T08:07:00.002-06:00

Today is the only June 15, 2010 you'll ever have. Today you have been given one more day on the Earth. Don't waste a second of this precious gift. You'll never have today again. Live today with a smile on your face, do your best at everything you do, help others along your way, and go to bed tonight with no regrets.

woot shirt - will work for money

2010-06-11T12:33:00.004-06:00

*Whew *

I just entered a shirt in the woot shirt derby. Something I have never done before. The theme is "Shirt you'd wear to a job interview", a t-shirt you wear to convince someone to hire you. We'll see how it goes. The shirts are up for vote for a few days and the three shirts with the highest votes get printed and the designer gets money. If you have a woot account vote for me! Or Just leave a comment on woot telling me what you think.

http://shirt.woot.com/Derby/Entry.aspx?id=42993

hospital visits and pity parties

2010-05-16T22:01:00.000-06:00

I was checking Jimmy out of school for a yet another Dr. appointment for what seemed to be the twentieth time in the past three weeks. As I walked through the halls and listened to the "normal" children in their class rooms I began to think about how unfair it all was, I am so tired of dealing with all of this, why can't my kid just have a normal life? I an so very tired of having to deal with all the doctors and appointments! I wish he could see like a normal kid I hate him having seizures and all these other medical problems. I hate to admit it but, I even began to cry. I got myself under control before I got to Jimmy's classroom and picked Jimmy up.

We began the long drive to Primary Children's Hospital when Jimmy asked me "Why do I have to go to all these Doctors? I never get to enjoy life, I never get to have any fun. my life would be better if I had never been born." While I do allow myself an occasional pity party I don't want him to have one. Jimmy is usually so cheerful and upbeat it kind of broke my heart to see him so down. So I began talking to him about how lucky we were to live somewhere where we had a good hospital to go to. We talked about all the wonderful things he had in his life, and how lucky he was to have all these doctors who cared for him. We talked about how many people loved him and about the fun things we got to do at the hospital. While I was cheering him up I found I had I cheered myself up as well. Sometimes when you help someone else look at the bright side you are really helping yourself.

2010-05-04T10:12:00.001-06:00

For those of you who love to bake, there is a giveaway at friedalovesbread.blogspot.com

Colored Easter Eggs

2010-04-02T08:01:00.002-06:00

Easter is quickly approaching and I asked the kids if I should buy eggs to color for Easter. This is the first Easter that we have had chickens. Our chickens lay brown eggs, tan eggs, speckled eggs and even blue-green eggs but no white eggs. My kids love to color Easter eggs so I asked if should buy some white eggs to dye. Their responses were:
"no way"
"Ewwww gross"
"only if we don't have to eat 'em"
and my favorite:
"what are we gonna use 'em for, target practice?"
I guess my kids are spoiled by their nice, fresh eggs.

Dr. Appointments and more Dr. Appointments

2010-04-01T08:41:00.003-06:00

I was dropping Jimmy off at school yesterday and he asked what time I was checking him out. You see, he has had a lot of Dr. appointments in the past two weeks. He has had blood draws and an MRI, and Brain Tumor Clinic, and an MRA, and we have talked to his pediatrician, and his oncologists and his neuropsychologist and his neurologist and we had a really, really, really long day at his opthamologist.
So he wanted to know when his Dr. appointment was going to be that day. I told him we didn't have Dr. appointments for the rest of the week, boy was he disappointed, he had to spend an entire day at school.

We still don't know what's causing his problems so he won't be sad for too long, we have more appointments next week.

Thankful

2010-03-19T11:29:00.002-06:00

I am grateful that Jimmy's MRI turned out to be clear. I am thankful that we have such a good health care system that I can get an MRI in a few hours notice. I'm glad that I'm so used to finding out the results of Jimmy's MRIs immediately that I complain when I have to wait for the next morning to find out the result. I am so blessed to have so many people that care about us. I'm glad that I have to now figure out why Jimmy is having these problems instead of trying to figure out how to fight a recurrence of his cancer.

had a bad year this week

2010-03-18T02:55:00.003-06:00

We had a rough day yesterday, and now I can't sleep.

We had parent teacher conference on Thursday evening where Jimmy's teachers told me he was having severe memory issues since about Christmas. His resource teacher mentioned placing him in another program in another school because they weren't able to help him here. Something like this would have been nice to know earlier. Then on Friday they sent Jimmy home from school because his right eye was hurting a lot. The pain gradually went away. I took him to his pediatrician who could not find anything wrong and called his ophthalmologist's office "is there any change in vision in that eye?" "No, he is still BLIND" Then on Sunday he had 3 seizures. His seizures had gradually been increasing but he has never had three in one day before. On Monday I called his neurologist, his neuropsychologist, and his oncologist. Monday afternoon he came home from school telling me his whole face hurt kind of like his eye was hurting before. After the Doctors all talked amongst themselves for a couple of days. I got a call yesterday morning telling me they wanted to do an MRI today. Jimmy was already in school so I had to check him out during his St. Patrick's Day activities and tell him "we get to go have an MRI." Yeah, he was pretty upset. I brought a drink for him to drink in the car on the way to the hospital (his IVs go better if he is well hydrated) and he had a seizure and spilled the drink all over himself. We got to the hospital and waited 30 minutes for the IV team to get there and it took 4 tries another 45 minutes of poking around in his veins to get the IV in, not fun. By then we had missed his time slot on the MRI machine we had an appointment for, it was either come back later or use the other machine. So we used the other machine. The radiologist has asked us in the past to always use the same machine for him, so we hope he will be able to read them alright. Of course by the time we got his MRI done the radiologist had gone home so we will have to wait for the morning to find out if his brain tumor is back.

So now I can't sleep.

Guilty Pleasure

2010-03-12T14:16:00.010-07:00

OK, I feel REALLY REALLY guilty about this but I will confess... My hubby and I went on an 8 day Mexican Rivera cruise with out the kids... and I enjoyed it anyway.
My hubby had talked me into going on a 3 or 4 day Cruise and we found this 8 day cruise for the same price, The bargain hunter in me could not pass up that deal.

Yes, I did think about the kids everyday, and yes, I did worry about them, and about Grandma and Grandpa who were at home watching them, But I really really enjoyed it anyway.

A couple of days before we left I kinda tripp-fell down a stair and sprained my ankle, I was afraid I had broken it. I was so worried that I would not be able to walk on our vacation but I was able to go without crutches for the entire cruise, Ok, my ankle did swell a lot and it hurt but, hey I was walking.

I don't know It may just be a coincidence but as soon as we got back home and relieved my parents of babysitting duty, they took a quick 2 day trip to St. George, a city 5 hours south of where we live. When they came home they announced that they had purchased a home there and were moving in a couple of weeks. Hummmm... do you think they were trying to tell me something?

Lover's beach in Cabo San Lucas,
Don't you Just love the ace bandage?

Boken Dreams

2010-02-04T09:11:00.008-07:00

I knew the day had to come eventually, and quite frankly I've been dreading it, but it has happened. Jimmy has decided he can't see and he does not like it. He used to tell people "I don't see very well out of one eye but, I can see just fine out of the other one". The truth is he has no vision in one eye and it's not much better in the other.

A few days ago Jimmy told me what he wants for Christmas next year, He wants sight, he wants to see. He told me that he has to ask for it for Christmas instead of his birthday because Santa Claus is magic and could get it for him. So... do I tell him the truth about Santa, or let him ask and be disappointed when he still can't see, or shall I hope he forgets before Christmas, after all Christmas is a long time off.

Yesterday I was talking to Jimmy about what he wanted to be when he grows up. He used to want to be a brain surgeon, or a helicopter pilot, now he wants to be a stay-at-home dad. When I asked why he has changed what he wants to do. He told be he can't work because he is blind. He'll just have to marry a wife who wants to work, because he can't do anything.

It's heart breaking to see your young child realize he will never attain his dreams because of limitations that are beyond his control. How does a parent walk that fine line between not wanting to destroy his dreams and accepting reality. The truth is that unless science can find a way to re-grow or repair his optic nerves he will never be able to drive a car (another one of his dreams) or be a helicopter pilot or a brain surgeon. I guess it is the same for all of us, in everyone's life there comes a day when you realize that your dreams will not be fulfilled and you're forced to confront reality. What did I tell Jimmy? I pointed out that his uncle's deafness has not stopped him from doing what he wanted to do, I reminded him about all the blind people he knows who have good jobs. I told him not to use the fact that he can't see as well as other people as an excuse, and we never know what the future will bring.

After all everyone has limitations, and the worst limitations we have are often those we put on ourselves.

christmas this year

2010-01-01T11:01:00.004-07:00

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?

2009-11-21T15:49:00.002-07:00

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

2009-10-30T07:35:00.006-06:00

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

2009-10-27T15:24:00.002-06:00

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!

2009-09-27T15:17:00.005-06:00

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

2009-09-14T10:43:00.002-06:00

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?

2009-08-18T15:54:00.003-06:00

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

2009-07-13T08:30:00.006-06:00

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!

2009-06-23T09:52:00.004-06:00

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

2009-06-17T11:45:00.005-06:00

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

2009-05-10T21:01:00.005-06:00

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

2009-05-05T08:56:00.003-06:00

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

2009-04-30T09:47:00.005-06:00

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

2009-04-28T10:02:00.003-06:00

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

2009-04-20T10:01:00.002-06:00

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.

Photo Tag

2009-04-15T09:02:00.003-06:00

I got photo tagged by Angel, I think she is trying to make me look bad in comparison to her. (Little does she know, she is so pretty anyone looks bad in comparison to her) She does not think I have the courage to show my face in public.

I haven't seen this tag before....and since it's been a while since I've done a tag, I thought I'd play along.

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...

good thing my camera is right here on my desk.

here I am in all my makeup-less, scruffy paint clothes, sleep deprived glory.

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.

Lessons from an Easter egg hunt

2009-04-14T08:50:00.005-06:00

"Winners Never Quit" Detail 11x14 acrylic

Busy, busy, Easter. The Kids had spring break starting Thursday and went back to school today.

We went to a improv show and an Easter party, flew kites, tore down a fence, built a chicken coop, (with the lumber from the fence), added insulation to the attic, and started painting the living room. I was so busy I kind of forgot about Easter. I had just finished picking my 17 year old from work late Saturday night when I realized that I didn't have any Easter grass for the baskets. Too tired and too late to go to the store, so the Easter bunny put out the Easter baskets "naked" with out any Easter grass. It worked great! none of the kids even noticed, and I had no Easter grass to clean up before company came for dinner.

We went to an Easter egg hunt Saturday, they had the Easter bunny there. I always worry about Jimmy in these Easter egg hunts. They had him in the age group that was 8 and up, he is just barely 8 and visually impaired. I know if I asked them to they would put him in a younger group or let me help him, but I don't want him to think he should get "special treatment" so I didn't say anything. He went on the hunt with the other kids, he did not see when the egg hunt started so he was a little behind the other kids and of course he could not see many of the eggs and passed them by. He found less than half the eggs that any of the other kids had. He was looking in his Easter basket and ran over to the Easter bunny with an angry look on his face. I ran after him , afraid of what he might say. As I got there I could hear him say "You didn't hide the eggs very well, look how many I found and I am blind." That made the Easter Bunny laugh, which he thought was cool because Bunnys aren't supposed to talk. I was impressed because I thought he was going to complain about his lack of eggs, instead he was proud of himself for finding so many eggs without help. I saw the glass as half-empty he saw it as full. The kid is always teaching me lessons.

Getting my kid to sing

2009-04-01T10:38:00.006-06:00

I am always telling my fifteen year old he has a fabulous singing voice, he seems to think I am only saying that because I'm his mom, I have been trying to convince him that I am saying it because it is true, but to no avail.

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

2009-04-01T10:07:00.003-06:00

Me and Jimmy

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...

Thumb Sucking Addiction

2009-02-24T12:43:00.004-07:00

No Smoking 8" X 10" watercolor

The other night I caught Jimmy sucking his thumb, he only does it when he is going to sleep in his bed under the blankets. I asked him if he was sucking his thumb. He told me he was. and then he said that his thumb was just like a cigarette: he is addicted to it and he can't stop. I told him sucking his thumb is probably not as bad for him as smoking but he probably shouldn't do it anyway. Then he asked me how people stop smoking. I told him there are different medicines and things to help but, what really has to happen is the person has to decide no matter how much they want to smoke they just aren't going to do it anymore.

Too bad they don't make a "patch" for the thumb.

All clear

2009-02-13T16:50:00.005-07:00

*Whew* it was a long and stressful day, but It ended well with a preliminary good MRI report, we will find out more details on Wednesday when we go to brain tumor clinic.

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!

Crossed fingers...

2009-02-12T09:14:00.003-07:00

Jimmy's MRI is tomorrow, Friday the 13th, When I made the appointment the date did not bother me, now, I'm not so sure. I always get upset, sick and nervous before an MRI, and I am not superstitious but .... keep your fingers crossed.

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.

Getting chickens

2009-02-07T06:38:00.004-07:00

My husband has decided we need chickens. I'm not sure why.. does he want fresh eggs? ...more pets? ... possibly he thinks he does not have enough to do. So after listening to him tell of all the benefits of having chickens and knowing I never could say no to the man. I said yeah, lets get 3 or 4 chickens. I also told him I was not going to be responsible for them, well see how long that lasts. So last Saturday I came home to find *surprise* we had 5 fluffy yellow baby chicks and 5 fluffy black baby chicks. I am not mad or anything, that is just how my dear Hubby is, he gets excited about something and tends to go overboard. And besides I'm not going to be the one taking care of them, right? Unfortunately one of the little yellow chicks died. My hubby decided to replace it and came home with 3 more chicks, now we have an even dozen. The neighbors will be so excited. Lets see, chickens lay an egg a day, that is seven dozen eggs a week. Does anyone want a dozen eggs?

This morning he said "I think we may have too many chickens"

I'm wierd

2009-02-06T08:52:00.005-07:00

Beehive Hairdo 2.5"x 3.5" trading card Watercolor

I was taking my two teenage sons to a game the other night and it was a little chilly out. I went to the closet to get a jacket or sweater and instead put on my fluffy pink polka dotted robe because, hey, it's warm and fluffy. As I was driving the boys I said "I hope I don't have to get out of the car because I'm wearing a bathrobe over my clothes, people might think I'm a little weird". Both my boy simultaneously burst out laughing. When I asked them what was so funny I was told that if I didn't want people to think is was "weird" the bathrobe was the least of my worries.

Other things my kids have said that leads me to believe that they think I am a little different......

My oldest boy told me when I came to teach art in his school "I like it when you come to school... then everyone can see just how strange my life really is."

My 16 year old said as I worried I might embarrass him at school "Mom don't worry, I just tell my friends you're an artist and they understand"

When I was on a Jr. High School field trip another kid asked my son "Is she really your mom?"

And I thought teenagers were strange.......

25 random things about me

2009-02-02T11:06:00.002-07:00

1. I have 4 sons I also had 4 miscarriages.
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.

Impossible Christmas gifts

2008-12-23T08:23:00.006-07:00

"Poinsettia" 6"x6" watercolor on clayboard

I am siting here thinking about Christmas gifts. My kids never want normal easy-to-find Christmas gifts. One of them always asks for something weird or impossible to find. Some of the Christmas gifts my have kids wanted: laundry baskets and tin foil (he wanted to make a space ship), a potty trained talking pony (This was the year after he "found out" about Santa and I think he just wanted to see Santa say no), A million dollars (we told him that even Santa's elves would get thrown into jail for forgery) An actual real-life Pokemon character, (his cousin told him they existed).

This year My 16 year old wants a laptop, Yeah right, like we have that kind of money. My 11 year old wants an actual, real life sword, Santa told him NO. My 14 year old can't think of anything he wants, so we'll just surprise him. My 7 year old wanted a world war II army medic set, army medic bag and a medic helmet (they have to be camouflage with a white circle and red cross on it), I don't think they sell these at Toys-R-us. Good thing I can make these.

What do you need for Christmas

2008-12-16T09:47:00.002-07:00

We were asking the kids the other night what they wanted for Christmas and my middle 2 sons could not think of one thing they wanted for Christmas (I usually only let them ask for one thing). My 15 year old said "Mom , but I don't need anything. It's kinda cool that I have everything I need and can't think of anything I really want right now." Actually I'm sure there are lots of things he wants, but I am glad he appreciates what he has.

believeing in Santa

2008-12-10T13:33:00.002-07:00

Jimmy has had a crisis of belief, he came home and told me that a girl at school told him there no Santa Claus, that mom and dad got up in the middle of the night and left presents for their kids.

He thought that was pretty ludicrous: Mom and Dad intentionally missing sleep? ha ha!

he told me he set her straight; he said to her "oh yeah, then where do they get the presents? If I wanted an I-pod touch my mom and dad could not make that, but elves can."

What is a Man?

2008-12-08T09:17:00.006-07:00

Big as Mothers Love 12x16" Acrylic on canvas

I was talking to my 7 year old telling him we are going to get new family portraits done. My son said "good, I don't like the picture we had done last year because I had a wiggly tooth"
I replied "You can't tell the tooth is wiggly in the picture"
"Mom! it made me look like a little kid and I am a big man now"
"You are?"
"Yes, I even put on deodorant this morning"

I guess he thinks stinky armpits define a man.

more brain tumors.

2008-12-02T08:48:00.003-07:00

I have close friend who very courageously battled breast cancer last year. I was amazed how she went through surgeries, many rounds of chemo and hair loss without a whimper, just like it was a minor bump in the road. They found a brain tumor last week when she started having seizures. She is having brain surgery today. I know what a craniotomy is like, I watched my son go through 4 of them. It breaks my heart to see someone else I love go through it.
All I can say is: brain tumors SUCK!

recovering from a siblings brain tumor

2008-11-27T03:45:00.007-07:00

"No Smoking" 8x10" watercolor

Grades just came out for last quarter. I was so happy! My 16 year olds GPA is 3.75, which is remarkable because he is taking some very difficult classes; half of the classes he is taking he is getting college credit for, and my 14 year old got a perfect 4.0! I knew they were capable of getting good grades but they have been struggling. The last few years my 14 year old was just barely passing his classes. He would easily get "A"s on all the tests but, he was not doing any of the classwork or homework, it was like he was not even trying. My 16 year old went through that same thing but he got his act together last year. Their grades became a problem 3 years ago when Jimmy, their little brother , got diagnosed with a brain tumor. That year my boys went from near perfect grades to barely passing grades. My 16 year old told me at the time he felt like his school work did not matter, good grades were not going to make Jimmy better, nothing he could do would make Jimmy better. So, on top of the fact that my kids are getting good grades *yippee!* I am also celebrating another sign that my children are recovering from their brothers brain tumor.

We are in trouble...

2008-11-25T09:39:00.003-07:00

This was sent to me by a friend

We are in trouble...
The population of this country is 300 million, 160 million are retired. That leaves 140 million to do the work.
There are 85 million in school. Which leaves 55 million to do the work.
Of this there are 35 million employed by the federal government. Leaving 15 million to do the work.
2.8 million are in the armed forces preoccupied with killing Osama Bin-Laden. Which leaves 12.2 million to do the work.
Take from that total the 10.8 million people who work for state and city Governments. And that leaves 1.4 million to do the work.
At any given time there are 188,000 people in hospitals. Leaving 1,212,000 to do the work. Now, there are 1,211,998 people in prisons.

That leaves just two people to do the work.
You and me.
And there you are,
Sitting on your butt,
At your computer,
reading jokes.

Nice. Real nice.

My husband in jail?

2008-11-11T07:15:00.004-07:00

Crabby ACEO 2.5x3.5" mini watercolor

The other morning as I was making a shopping list and my hubby was in the bathroom getting ready for the day, he noticed that he was out of hair gel, so he hollered to me "I'm out of gel"

"OK" I said making a note of it

My seven year old ran into the room with a very concerned look on his face asking "What did Dad do? How come he was in Jail?"

First job

2008-11-06T09:20:00.003-07:00

My oldest boy just got his first job. He wanted to do tech support for Geek Squad or Fire Dog. He lives for computers, he is a computer genius, When he was 2 he would sneak out of bed at nap time and go turn his dad's PC so he could play, He wanted a modem for Christmas when he was 5, he wrote his first computer program when he was 7and he built his first PC when he was 10. However, he has no prior job history and 1.5 more years of high school left to do, so he could not get those jobs. He settled for working at Circuit City in sales. He hopes to work his way into Fire Dog. He was very excited when they called and told him his first day of work would be Saturday. The next morning on the news they announced they will be closing a number of Circuit City stores. He may get to experience his fist job and his first layoff.

Stitches again

2008-11-05T09:45:00.005-07:00

We had to take our 11 year old son get stitches Sunday night. He is a very creative thinker and my little inventor. Apparently he decided to make combination exercise equipment and Halloween candy storage gadget made from 2 large eye bolts screwed into the wall and a rope strung back and forth across the room. The eye bolts were screwed into the wall studs or so he thought. As he was doing "chin-ups" from the rope the eye bolt came out of the wall and hit him just above his right eyebrow. This is the second time he has had stitches, the last time it was in the other eyebrow. He had to get 6 stitches amongst much protest of "I'm fine", "it doesn't even hurt" and "I DO NOT need to go to the emergency room"

Halloween Costumes

2008-11-03T09:17:00.007-07:00

For Halloween Jimmy (age 7) wanted to be a soldier, this is no surprise considering he is constantly pretending to be a soldier and fighting bad guys. (blog entry 2/25/08) He insists upon wearing camouflage everyday. I knew he would wear a soldier costume very often. I looked for a sturdy costume that could take a lot of wear and tear, be affordable and it had to be authentic looking, Jimmy is very detail oriented. I could not find one anywhere. So I made one: I found sturdy camouflage fabric at Wal-Mart for only $3 a yard and looked up photos of soldiers online and made this costume, I even made the hat! It took forever, I didn't use a pattern, I never have been good at following directions, If I had used a pattern it probably would have been easier and faster. It turned out cute and Jimmy loved it! Very good considering I haven't really ever made clothes before.

My 11 year old wanted to the Tooth fairy only with his own personal twist, He wore a tutu and wings and and carried a wand that was duct taped together. he had torn, dirty jeans and wore a stained pillow stuffed T- shirt that read "I'm the tooth fairy -'ya got a problem with that? this costume was all his idea, he enjoys being funny. It was easy, all I had to make was the tutu.

My 14 year old was a monk, He wore the robe I made for a "death" costume a few years ago with a big silver crucifix, a rope around his waist and sandals. He looked good.

My 16 year old went as a hippie: he had a long wig, a tie dye shirt, peace sign necklaces, and a fringed leather jacket.

My 14 year old decided he still wanted to do some trick-or-treating, but he did not think he should eat the candy, so he gave all the candy to his older brother who was at a party all night, I was proud of him, he has been dieting and this was all his idea to give the candy away.

pumpkin seeds recipe

2008-10-28T09:52:00.002-06:00

2.5x3.5" ACEO watercolor

We carved pumpkins last night. Yeah, I know it is a little early for pumpkin carving, but it was the only evening the family was all home together to do it. We carved the pumpkins and saved the seeds for the kids favorite Halloween treat: Pumpkin seeds. I have had people ask how I cook Pumpkin Seeds so here is my recipe:

Separate pumpkin seeds from pumpkin. the easiest way to do this is to scoop the seeds out with your hand, before you remove the pulp from the inside of pumpkin. rinse all pumpkin pulp from seeds, you may have to rinse 2 times. Cover seeds with water, add Worcestershire sauce (if desired) and salt: abt. 2 tsp. of salt to one pumpkin's seeds. and mix well. Let seeds soak in brine overnight. Drain seeds, scatter seeds on buttered cookie sheet, let dry. cook seeds at a 350 oven stirring every 10 min. until seeds are toasted to a golden color.

Try different seasonings. Try adding garlic powder or butter flavor.

Thoughts on being alone

2008-10-23T09:24:00.004-06:00

ACEO watercolor miniature 2.5"x3.5"

My brother-in-law posted in his blog about going to a movie by himself. It made me think. I have never gone to a movie by myself, I just don't have time, I usually don't like movies unless they are really good, I just sit and think I about how I could be better spending my time. However, I wouldn't mind going to a movie alone. I don't mind eating alone in restaurants either. When I go on business trips or conventions with my husband he always frets that I will have to be alone most of the time. I always have to convince him that I enjoy spending time alone. I do like being around people, but I am just as content to be with myself. Does that make me weird?

life is so unfair

2008-10-08T09:29:00.006-06:00

Portrait of my oldest son 12"x16" Acrylic

The other day, just after parent-teacher conferences we were talking, my second oldest son had just had an exceptional parent teacher conference, after getting poor grades all year last year, he was now getting almost perfect grades. Last year when we had a similar report at parent teacher conference with our oldest son we stopped and bought him a T-shirt from his school as a spur of the moment reward. When all of my second sons teachers praised him so abundantly (one even cried) I thought I'd better buy him a T-shirt too, just to be fair, but they were not selling any shirts that night. I told my second son that I wanted to get him a shirt, but instead of a shirt I would spend an extra $10 on the scriptures that I was getting him anyway and make it a nicer book. My older son overheard this and started whining, about how unfair I was being, he had already been complaining about how we wouldn't buy him a laptop and how we expect him to do chores on his day off from school. It made me so angry. When my oldest was that age I got him new scriptures and a t-shirt, the t-shirt cost more than the extra $10 I was going to spend on his brother.

When I calmed down some I firmly told my oldest that if he goes around comparing what he has to what other people have he is always going to be unhappy. There will always be someone who is better looking, richer, has nicer parents, is more talented than him and if he looks for life to be fair he will be forever disappointed, bitter and angry. The trick is to be grateful for what you do have that is what really makes you happy.

I sat there fuming and suddenly I wondered if God ever feels that way toward me when I am asking for more or complaining about what I don't have. Do I ever make him that angry at my selfishness and ingratitude?

painting on watercolor canvas

2008-10-02T08:23:00.004-06:00

Temple Square Tulip 9"x11" watercolor on gallery wrapped canvas

I did this painting for the Utah State Fair art show. I try to do a painting for the fair every year. I usually hurriedly paint something the day before or the day of the deadline. This year was no exception. I frantically painted this the day it was due. This watercolor was done on watercolor canvas, the first painting I have ever done on watercolor canvas, it was a learning experience. It is nearly impossible to do any glazing on watercolor canvas, the canvas stays wet for quite a while and the colors seem to lighten quite a bit when it dries. Had I known that I may have used another technique to paint it . The watercolor canvas did come with a little "tips and techniques for watercolor canvas" flier, but I did not read it until I was finished with the painting. One tip I wish I would have known is that if you want to glaze on watercolor canvas spray a fixative between layers. I'll have to try watercolor canvas again and use this tip. The cool thing about watercolor canvas is you don't have to frame it under glass. If you fix it you can just frame it and hang it like an oil on canvas painting. I painted this on gallery wrapped canvas so I did not frame it at all. I did have someone from the fair call me to make sure that this was really a watercolor.

Overall it is not a bad little painting but it probably would have been better if I read taken more time on it and read the directions.

Guitar Hero 3 competition

2008-09-29T11:05:00.006-06:00

At the Utah state fair they had a Guitar Hero 3 competition, my oldest boy seems to be pretty good at GH3 so we encouraged him to try out for the competition. the preliminaries were held at a local video game store, my 2 oldest sons and my husband made it to the final round at the State Fair. Well ... my oldest boy won second place and won $50.00 he was very excited about it, he was younger than the other winners and the man who took 1st place is a "professional" GH3 player. After the competition my son said all those viola lessons we gave him for all those years finally paid off.
Yeah, Right, that's what the lessons were for...

A national shame, our children are dying

2008-09-22T09:08:00.007-06:00

I read this article, (see link at bottom) It made me realize that I need to speak up and say something. As a parent of a brain tumor survivor. I saw treatments that were available to adults, but were not available to my son because he was a child. These treatments were not available to children because they have not been tested on children and there weren't even any trials even being done. I know what it is like to decide to treat my child for his brain tumor with treatments that I knew would reduce his IQ by more than 10%, destroy his Thyroid, damage his pituitary gland, cause possible deafness, and blindness and leave him permanently bald. I chose that treatment because it was the only one available.

The number one killer of children is cancer. Cancer claims the lives of more kids than the next 5 on the list combined.

Half of the children diagnosed with brain tumors will die within 5 years. Overall one in five children diagnosed with cancer will die within 5 years. The 5 year survival rates for breast cancer is 88%. So why was breast cancer funding in 2006 $ 584 million, while childhood cancer received $ 26 million.

For some, the battle with cancer ends quickly because there are no good treatments. There has only been 1 new chemotherapy medication approved for children's cancer over the past 20 years. Mostly because there are so few clinical trials for pediatric cancer. The funding for pediatric cancer clinical trials has gone down every year since 2003.

The treatments known to destroy these rapidly growing cells can also destroy just about every system that is rapidly growing. As our kids grow so quickly, all of their cells and systems are targeted and this leads to multiple disabilities - if they are fortunate enough to survive. The course of treatment for cancer can last upwards of 3 years. During these times they go through irreversible trauma. When they are finished and try to fit into the "normal" world again, they are faced with many physical, intellectual, and emotional challenges in trying to adjust to a new world. The impact is devastating to each member of the family - emotionally, physically, mentally, spiritually, and financially.

Children can't advocate for themselves and their parents are usually too devastated financially and emotionally to petition congress and promote childhood cancer awareness. I do need to say something, perhaps it is too late for any research that may help my child, but I never want another mother to have to make the choices I had to make. We need better treatments for our children with cancer.

read this
http://www.forbes.com/opinions/2008/09/11/pediatric-cancer-philanthropy-oped-cx_hj_0912jonsen.html

MRIs cause brain damage

2008-09-04T10:59:00.003-06:00

I have decided that pediatric MRIs cause brain damage, not in the child receiving the MRI, but in the parent of the child receiving the MRI. It is that time again, and I thought I was going crazy, I couldn't concentrate, I didn't seem to be able to string two words together coherently.

I am so glad that his MRI is over now: Jimmy had a "stable" Mri-*WOO-HOO*. The most amazing thing happened: my 7 year old boy held absolutely still for over 40 min. and did this MRI without sedation! I was so impressed by that! especially when he still had to have an IV for contrast. He hates IVs and thought that if he went without sedation he might not have to have an IV. The whole without sedation thing was his idea and it really made things so much quicker and easier. I am so proud of him.

Ride for kids

2008-09-02T10:01:00.008-06:00

We went to the Ride for Kids, fundraiser for the Pediatric Brain Tumor Foundation recently, we had lots of fun, all the kids got to ride on motorcycles all the way up the canyon. They loved it. Utah had a record amount of donations. we have only been doing Ride for Kids in Utah for a 4 years in Utah and we out fund raised places where they have been running much longer. http://pbtfus.org/rideforkids/calendar/2008/utah08.html

Our family had enough donations for the drawing for the motorcycle, but of course we did not win.

They fed us very good lunch, after lunch they interviewed the brain tumor patients on the stage. Little Jimmy was the youngest Brain tumor patient there, but he spoke as if he were much older. Among other things he said "I am grateful that so many people cared about kids with brain tumors that they were willing to come out". It sounded like a speech that an adult had written for him. I guess he is a good public speaker.

My husband drove his motor scooter the entire way and kept up with all the bikers on their big Harley's just fine.

First day at "regular" school

2008-08-27T08:23:00.004-06:00

Jimmy's first day of "regular" school was a tough one, not tough for him but it was for me. It was really hard for me to leave him there where he did not know anyone and no one knew about the extent of his disabilities. He hides his blindness very well and he is very independent, he won't ask for help. I know lots of people think I am crazy when I worry about him. But, after all, he is only seven and I am a mom. Here are a couple of things that happened his first day of school.

I drove by his school during recess and saw him in the corner of the playground alone sitting against the fence. All the other kids were running around the field and playing on the playground. I pulled the car over so I could walk over and talk to him when he suddenly got up and ran to the school building, seconds after he started for the building the bell rang and all the other kids ran to the school with him. When he got home that night I told him I saw him and asked him what he was doing. He told me he could not see any other kids on the playground and did not know what to do so he was saying a prayer. When he was done praying he said he knew he should go to the school building.

I asked Jimmy if he introduced himself to his class. He said the teacher asked each child to tell the class their name and something interesting or unusual about themselves. He said he told them his name was Jimmy and that he had a wii game system. I asked why he told about the game system. He replied that it was all he could think of. Hmmm... the kid has had a brain tumor, is blind, half bald & wears a hairpiece, has has 4 brain surgeries and the only thing he can think of that is unusual or interesting about himself is that he has a wii game system?

Good for him.

End of Summer, First Day of School

2008-08-25T09:59:00.003-06:00

My little boys walking to school this morning

Well it is finally here, the first day of school, the day I have been dreading with some anticipation for months. I think I am the only mom that cries the day she sends her kids back to school. Sure, I will enjoy being able to get things done around the house and I will enjoy the quiet but, I will miss the kids and the noise and I'll miss the hugs whenever I need one. When I send them to school it just seems like they age an entire year in one day. I now have kids in 11th, 9th, 6th, and 2nd grades: where did all the precious summers with them go?

It was especially hard to send Jimmy this year, he is being mainstreamed and I can't help but worry about him. I worry about him getting lost, making friends, fitting in with the other kids. I worry about both my youngest boys, with their learning challenges, falling through the cracks.

I worry about my 6th grader, he does not seem to have any friends at school, I watched the other children run to their buddies on the playground, but my boy just stood there alone by the school door and watched the other kids. He really hated school last year I hope this year will be better.

I worry about my two teen age sons: are they making good friends and making good decisions? Is my oldest ever get his eagle so he can drive? Will they be able to understand the importance of getting good grades?

I look back at their summer, did my boys have good experiences? did we build good memories together as a family? did we have enough fun to last until next summer?

The Dreaded "School shopping"

2008-08-19T08:11:00.005-06:00

It is that time again, time to go school shopping. School starts next Monday and I can't put it off any longer. I hate school shopping, I really don't like spending money but that's not all, the money isn't the worst part, the worst part is shopping with my boys. Have you ever taken four boys to buy CLOTHES? It is like pulling teeth, only not as pleasant; when you go to the dentist at least you get Novocaine. Last year I tried to get it all done at once, all four boys in the store together trying to get them to try on clothes and not play games, fight or escape. It didn't work very well, I had boys shopping in the children's dept, men's dept, shoes, and electronics dept. (I had to keep chasing them out of the electronics dept.) I think my headache lasted for a month.

So this year I plan to take a day for each child. I can see us having an enjoyable day together, I'll stop and buy them lunch and spend quality time with each boy and they would enjoy shopping for clothes with me.

yeah, right.

Full of hot air

2008-08-12T07:59:00.010-06:00

My husband wanted to go to the "Sandy Balloon Festival" Friday. We got there early so we could see the balloons inflate. We took your youngest boy, Jimmy, the only one who wanted to wake up that early. We got to the park to watch the balloons inflate. Where Marty quickly found a balloon pilot who needed help. He had fun helping, unfortunately the winds kicked up just as the balloons were getting inflated so they never got off the ground. However Marty had by this time volunteered to help with the balloons on Saturday morning as well. It was lots of fun.

So when we got there Saturday morning (this time with all 4 boys) and helped set up the balloon again. Only this time the pilot asked Marty to be a passenger in the balloon and me and the boys got recruited for the "chase team"

We also went and helped out Saturday night at the "glow" but unfortunately the weather was not co-operating again. Now Marty is saying he wants to buy a balloon . Friday when My husband asked it I wanted to go to to a balloon festival I never imagined that I would be part of a balloon chase team and discussing buying a balloon... I 'm still deciding if it was a good decision to go.

My boys did learn that good things can happen when you volunteer to help someone.

We are going to another balloon festival this weekend.

Etsy- anything you want

2008-08-11T10:02:00.007-06:00

Bracelets I am selling on etsy

Let me tell you about one of my new favorite sites: Etsy.com: It is a website for buying and selling handmade items. There is some fabulous stuff made by very talented people for great prices. It is like the most fabulous boutique you have ever visited, only better, and online. I have begun to sell my jewlery for Pediatric Brain Tumor Foundation and I have already sold 3 bracelets in the past week. My Etsy ID is ArtistMelody

One of my favorite parts of etsy is Alchemy where buyers can post requests for custom handmade items, and then sellers bid on the opportunity to make the goods. Have you ever wanted a handmade book, dress, art, or jewelry custom made just for you? here is your chance, if you can dream it someone there can make it. Just describe what you want with what price you are willing to pay and all kinds of artists and artisans send you bids. You can look at their work and decide to get what you want. This is just so cool!

the price of gas

2008-08-01T11:04:00.005-06:00

"Marty '82" 8x10 oil

My dear husband has wanted a motorcycle for a looooong time. I just love him too much to want him to have one: I have seen and heard of too many accidents involving motorcycles. I don't want to risk it. I tell him to please wait until he older and we no longer have a family to raise before he gets a motorcycle. And he loves me enough to not get a motorcycle

Well with gas prices the way they are now my man has come up with a new argument: It will save money. He wanted to get a motor scooter to ride to work, he won't ride it on the interstate so it is safer than a motorbike and it'll get lots better gas mileage. I'm not convinced we will actually save very much money by spending $1,500 on a scooter but he really wanted one and he said he won't get one without my "blessing." I'm not that motivated by money I value my husband much more than MPG. I do feel bad asking him not to do something he really wants to do, actually he knows he can talk me into anything.

So we went out and got a shiny new motor scooter for his birthday. Along with 2 helmets so he can take a passenger.

Vroom...vroom......

Memories

2008-07-31T12:53:00.001-06:00

Just for kicks, I am copying my little sister Angel with this post idea. Pretty please ( with sugar on top), read below, and leave a comment -- even you lurkers out there who read and never say a word.

Directions1. As a comment on this post, leave one memory about me. It doesn't matter if you know me really well or if we don't know each other very well at all (like my new blogging friends). The memory can be anything you remember...something recent or something from when we were kids or from when we first met (and even if you only know me through blogging...you can tell me your favorite blog post and why or something). If we know each other really well and we have a lot of memories together just choose your favorite memory, the funniest memory or the first one that comes to your mind.

2. Next, post these instructions on your blog and see how many people leave a memory about you. It's actually pretty cool (and funny) to see the responses. If you leave a memory, I'll assume you're playing the game and I'll come to your blog and leave a memory for you if you put this same game on your blog!

Free art lessons, tips, tutorials and demonstrations

2008-07-22T10:26:00.003-06:00

Here are some links to free art lessons, tips, tutorials and demonstrations

ArtGraphica Free Art Lessons: Learn how to draw portraits, landscapes, still life... http://www.artgraphica.net/free-art-lessons/free-art-tutorials.htm

Utrecht: Art & Ed
http://www.utrechtart.com/community/index.cfm?catID=3

Free art lessons:
http://www.freeartlessons.com/lessons.htm

Drawing lessons:
http://www.drawspace.com/

Watercolor Tutorials:
http://www.watercolorpainting.com/watercolor-tutorials.htm

Learn to Paint Wildlife and Animalsby Jason Morgan Professional Wildlife Artist:
http://www.jasonmorgan.co.uk/Misc%20pages/demos.htm

Enjoy!

The hospital bag....

2008-07-21T10:29:00.002-06:00

I am at the hospital all day today, Jimmy is having his Neuropsychological assessment done, it usually lasts all day long. I am supposed to stick around in the hospital, it is going to be a long boring day. There is surprisingly little to do around here, I am prepared: I brought my "hospital bag" It is a bag full of stuff I may need at the hospital: snacks, a book or two, activities for me and Jimmy to do . I used to have a change of clothes in there just in case they kept Jimmy unexpectedly overnight. I don't have the clothes in there anymore, Jimmy is not "in treatment" so there is little chance of him being kept overnight. I pretty much keep my "hospital bag" packed all the time. I guess it is a remnant of the uncertain times when I never knew what the future would bring. It is just one more reminder that in the back of my mind things will never quite be "normal" for me again.

vacation photos

2008-07-17T09:11:00.015-06:00

My boys sleeping after a looong day at 6 flags, Actually, we were waiting for my husband when the boys decided to pose this way. I heard my oldest yell "photo op" and turned around to see this. They did get some odd looks from passers by.

San diego: My oldest boy posing in front of front of our ship. Yes, he did have fun with the camera on this trip.

Son #1 posing in a store in San diego. I think I'll save this photo to blackmail him with later.....

Son#2 in the cruse ship dining room

Our second day on the cruise was in Catalina Island. The three oldest boys and their dad went snorkeling and I stayed with our youngest and played on the beach.

They had a climbing wall on the ship, sons #1 and #3 got to the top on the first try. This is son#3 almost to the top.

My youngest also climbed the wall but he never made it to the top.

Son #3 eating escargot on the ship, my boys decided they wanted to try a different new food everyday.

Day 3 on the cruise was Ensenada, where we bartered and shopped here is my oldest eating a taco from a street vendor there.

The last night in the dining room we are clapping for the singing and dancing waiters.

Son #4 as an "adventure pirate" part of the kids club on board the ship.

how we spent our summer vacations...

2008-07-15T07:19:00.005-06:00

We went on a family summer vacation this year... It has been a few years since we had a summer vacation. Last year (2007) our summer was so busy that we never had the whole family together for a few days that we could go somewhere. The summer before that (2006) we were spending every spare minute making trips trying to clear up my father-in-laws estate and my son's brain tumor stuff. The summer three years ago (2005) my son was diagnosed the day we were supposed to leave on our vacation, we spent our summer vacation having brain surgeries.

We did do things together as a family, just never an official "all-go-somewhere-together-in-the-summer" vacation. So we finally did it. We took our government stimulus package check and our savings and blew it on a 4 day cruise. we took off, drove 14 hours in our gas-guzzling-minivan, spent 4 days with it with my sister in California, we were 4 days on the cruse and spent another looooong day driving back home. Then I took another 4 days at home to recover.

Hobé: Kids oncology camp

2008-06-25T08:33:00.006-06:00

My youngest 2 boys at camp

My kids are at camp. I had 3 boys gone last week and 2 gone this week. They are at Camp Hobé, a camp for children with cancer and their siblings. It is kind of sad that this will probably be the last year that they will be able to go: Jimmy is done with his cancer treatments. I'm not sad he is done with the cancer, just sad that my kids will not be able to go to Camp Hobé It has been the highlight of their year. Camp Hobé is kind of a magical camp. Where else is a mom going to be comfortable leaving her blind 7 year old brain tumor patient for a week? My boys are not new to going to camp, they have been going to scout camps with their friends for years, but they really love Camp Hobé. The first year that they went I was worried, they did not know anyone there, but they came home having made lots of friends with kids because they have one huge thing in common: Cancer.

I am so grateful that this camp includes the siblings of the children with cancer. Cancer has a profound effect on the patient but, the effect on the siblings is often just as bad and so often overlooked. When you are of sibling of cancer you are ignored while your parents kind of fall apart, you usually have more responsibility instantly, you have to become the one in charge because you parents are always gone, you have to watch your sibling suffer and not understand why, you watch your sibling be showered with gifts and attention while you are ignored, and you can't say anything because you are healthy and your brother is sick. At Camp Hobé my boys are surrounded by kids who understand. These kids have been through it also, and they learn that they are not the only ones.

This camp is so great that my oldest boy passed up a chance to get paid to be a Jr. counselor at scout camp and volunteered to be an unpaid Jr. counselor at Camp Hobé.

I just want to thank Camp Hobé for what they have done for my kids.

the marshmallow incident....

2008-06-18T07:51:00.001-06:00

By the Sea 5x7 watercolor

My kids were roasting marshmallows for an after dinner treat the other night and offered me some. I told them I don't like marshmallows, I never have.

It reminded me of an incident from my childhood. I was probably 8 years old or so and I got a huge sliver in my foot from trying to climb a wooden fence barefoot. My mom was trying to get me to hold still so she could remove the sliver when she tried to bribe me with marshmallows. "If you'll hold still so I can get the sliver out I'll give you some marshmallows" I didn't like marshmallows, but my brothers did! So the idea of tormenting my brothers with "I get marshmallows and you don't nananana naaanah" became my motivation for holding still. Of course I never said anything about that, If my mom knew it would never work. My mother removed the sliver and then proceeded to hand out marshmallows to me and my brothers saying it was a celebration of my bravery. Boy was I mad! My brothers did not have to have a sliver removed and they still got marshmallows! how unfair! My mom said she never said my brothers would not get marshmallows I should be happy that everyone was benefiting instead of just me.

I was really really mad, but over the years as I thought about it, mom was right. My desire to make my brothers unhappy was ultimately what backfired and made me unhappy. If I had wanted to make those around me happy instead of upset then the whole incident would have turned out different for me.

Again it all comes down to attitude.

breakfast in bed for the boys

2008-06-09T08:46:00.004-06:00

"Cats in the Kitchen" commissioned watercolor 18"x24"

My 10 year old had an idea that he wanted to cook his brothers breakfast in bed in celebration of the first day of summer. He did not get up quite as early as he planned so he went around ordering all his brothers to stay in bed because he had a surprise for them. He made them pancakes, scrambled eggs, french fries, and orange juice. Yes, I did suggest hash-browns but, he likes french fries better. Of course I "helped" him with everything. When the boys were served breakfast in their beds my oldest asked if he could eat his breakfast in the kitchen because he did not want to risk spilling syrup in his bed. Then my youngest boy asked if he could eat his breakfast in my bed because he did not want to get syrup in his bed. Later my youngest came in the kitchen for more orange juice he told me what he really needed was someone to stand there while he ate his breakfast in bed and go get him everything he needed. Yeah, right, the service here ain't that good honey. It was a HUGE mess to clean up, there was syrup on the carpet where one son ate sitting on his floor and syrup in the bedding of one boy, not to mention my 10 year old is a very messy cook, and my dishwasher broke, but it was worth it.

Introduction to a new school

2008-06-04T09:56:00.006-06:00

"Andy" 16"x12" acrylic on canvas

Jimmy is getting "mainstreamed" next year for school. He currently goes to USDB (Utah School for the Deaf and Blind) He is on the bus for an hour each way to school he has 4 kids and 2 teachers in his classroom, only 2 kids in his grade. We have decided to send him to the neighborhood school just down the street, it is a five min. walk away with 30 kids and one teacher in the classroom, naturally he is nervous about the change, so am I.

I took Jimmy to the school he will be going to next year, I thought it would be good for the teacher and the principal to meet Jim and it would make Jim a little more at ease if he met his teacher. When we got to the his new school the principal and teacher were waiting for us. The principal said to him "Hello, Jim, I'm the Principal" Jimmy reached out and took her hand and said very formally "I'm very pleased to meet you" and then turned and shook the hand of the teacher. The principal and teacher both looked very surprised to see such manners from a 6 year old. Believe me I was even more surprised. I do try to teach my children good manners but I don't think I ever taught him this.

What did we ever do without cell phones?

2008-05-19T10:58:00.002-06:00

What did we ever do without cell phones?

My 10 year old wanted to ride his bike to the school and around the block and I almost didn't let him go because he wanted to ride alone and his brother was elsewhere with the cell phone that the boys share. *panic* How could I check on him? what if he needed me? I started thinking about what I did as a child. My mom used to let me ride my bike around and I just had to be home in time for dinner. Am I such a neurotic parent that I freak out when I know my kid will be out of contact for 30 minutes? YES! I decided that I needed to calm down, and give the poor kid a little freedom, so I told him to go ride his bike, just be home in time for dinner.

Oh, and I had him take him MY cell phone so I could call him....

An angry 7 year old

2008-05-13T09:24:00.006-06:00

"Willy" 2.5x3.5" Mini Watercolor and prismacolor pencil

I had my littlest son, 7 year old Jimmy, get mad at me the other day. He got mad at me for doing something I never expected anyone to get mad at me for.

Jimmy and his 10 year old brother, Randy were both quarreling and it was bedtime anyway so I sent them both to bed. I went in to tuck Jimmy in and kiss him goodnight when he said "I'm mad at you!" I thought he was angry at me for sending him to bed but, when I asked him why he was angry he replied "This is all your fault. Why did you have to have Randy?" Yes, that is right he was mad at me for giving birth to his older brother! I have done many wrong things that people could be angry about but, I have never had someone get mad at me for giving birth before. I did try to explain that I had to have son#3 before I could have son#4 it did not seem to placate him. I did get to go to bed with a good laugh though.

How to teach kids about money

2008-04-28T07:15:00.005-06:00

I was in the car on the way to the store listening to my 7 year old and my 10 year old talking to their 8 year old cousin. They were talking about money, they were busy explaining to their cousin why he should not spend his money in the store, he should put it in the bank. "The bank will actually pay you money if you put your money in the bank but you can take your money out anytime you want." My 10 year old then said that "If I had a million dollars I would put it in the bank and they would pay me $.10 a minute to keep it there even when I am sleeping." I'm not sure here he got his information but, he was not too far off: a million dollars at 10% interest is closer to 9.5 cents a minute. That may not sound like a lot but, it adds up to about $49,800.00 a year. I'm not sure where my kids got their information from, I don't think they learned it in school! I they learned it from their financial genius father. He makes sure to explain the workings of money to the our older boys all the time. It has probably been overheard by their brothers.

It got me thinking about how we teach our kids about money. I can think of a couple of instances that have helped us to teach our boys.

I remember when I was about 16 or 17 when my dad out of the blue said to me "How would you like to have 15% to 20% more money without working any harder or doing anymore work?" of course I was interested, He went on to explain that if I wanted to buy something I should save up for it instead of charging it. I would be earning interest in the money I was saving instead of paying interest on the money I had borrowed. ( %5 interest earned plus 15% interest saved) And I could sleep well knowing I was not in debt to anyone. I always remembered that lesson, and I strive to never be in debt. Of course I have passed that story along to my kids.

Another success came when we were going on a vacation. We were tired of the kids asking for goodies at every gift shop and store we went into. Before we left for our vacation we gave each of the kids a ten dollar bill and told them that this was their money to spend, when we went to anyplace and they wanted to buy something they would have pay for it themselves and any money that was left over they could keep. The kids were quite young they were thrilled at having so much money. On that trip when the kids would ask for something all we would do is ask "do you have enough money for it?" It worked wonders! No whining or begging! The kids stopped bugging us for things, they learned about money and how to make good choices, the kids came home with money in their pockets, and it saved mom and dad some money also.

Don't let society's messages "things give you happiness" and "you should have instant gratification for the things you want", be the only source of learning about money that your children receive. Don't be afraid to talk to children about money.

How to be happy

2008-04-21T09:11:00.007-06:00

"Don't Be Such a Crab" mini watercolor ACEO 2.5"x3.5"

Do I want to be happy or not? Being happy is all in how I look at it:

I could go around angry that my little boy had a brain tumor and is blind and half bald. or I could be grateful that he is still alive.

I could be bitter that we have to spend at least $3,000 every year on medical bills for his MRIs and treatments for the next 11 years, or I could be grateful for the insurance to cover the rest of his medical bills.

I could be upset that I have to deal with the hassle of putting a hairpiece on my 7 year old everyday or I could be happy that he has a hairpiece to put on.

I could be frustrated by the mess that my kids leave all the time or I could be happy to have kids to leave a mess and a nice home for them to mess up.

I could be bitter or I can be happy It is MY choice. I have decided to be happy. Sometimes I just need a reminder.

Breaking braces and rules

2008-04-18T11:37:00.004-06:00

My 10 year olds teeth looked nice and straight so I was surprised when he told me that his lover teeth were making sores on the roof of his mouth. He was very excited when the dentist told him he would need braces. (He was also very excited when he had to get stitches.)

His two older brothers haven't needed braces and I have never had them so the experience is new to me. When we got the braces his orthodontist gave him a long lecture on what he could not eat. My son was given a long "no, no, list" of things he can't eat to put on the fridge as a reminder: no suckers, no jolly ranchers, no gum, no popcorn, etc. He was being very good about what he was eating and following the list.

One week later my boy came up to my and said he had broken a bracket on his braces. I asked him what had happened. He said "I was eating a jawbreaker....."

*Arrgh* "you are not supposed to be eating jawbreakers" I grumbled

He brought me over to the list on the fridge and said "look it does NOT say no jaw breakers."

Well he was right.

We had a nice talk about following the letter of the law and the spirit of the law.

Beauty through the eyes of a child

2008-04-15T11:36:00.006-06:00

"Self Portrait" Mini Watercolor ACEO 2.5"x3.5"

Jimmy, was watching me put on makeup when he picked up my mascara and asked “How come you put this on?”
I replied “so I can be beautiful”
He looked at the mascara and asked “can I put some on?”
I said “You are a beautiful little child so you do not need any makeup”
He told me “Mom, everyone is a children, we are all Heavenly Father’s children”
I looked down at his sweet little face and asked “Well then, do you think Heavenly Father thinks I’m beautiful?”
Jimmy looked up at me with his big blue eyes and said “Not yet” as he handed me the mascara.

sports for the visually impared: Skiing Blind

2008-04-14T20:34:00.006-06:00

Jimmy's last ski day with the School for the Blind was last week. The School for the Blind takes the kids skiing 5 times a year. Jimmy loves it. It is one of the highlights of his school year. It is amazing how well Jimmy does on the slopes, he went skiing this time without the his "Ski Guide" assisting him much at all. His guide just skied close to him and yelled directions. Jimmy was so proud of himself and he kept saying that he only fell down once. The National Ability Center in Park City where they teach these handicapped children to ski. Not only do the kids learn to ski it is a reminder to parents that just because our kids have special challenges we have to not set limits on what they can do. It is a reminder that I need, sometimes it is hard for me to let him do "regular" kid things.

I think I may be raising a deep thinking teen

2008-04-07T08:56:00.006-06:00

Tropical Fish 2.5"x 3.5" mini ACEO watercolor

My 16 year old came home the other day complaining that he had planned to invite his friend, Joseph, over for a computer battle but Joseph couldn't come over because he had a date.

My son has a dating quandary, he has always has lots of girls he likes and he has gone on a few dates since he turned 16 (Mom's rule: no dating until you are 16!) when the girl has asked. But, he does not want to ask any girls out, because he does not want all the girls to think he has a "favorite" (his words).

I asked if the girl that Joseph was going out with was cute. His reply was an unenthusiastic "yeah, she's really cute".

I said "too bad you didn't ask her out first"

What he said next surprised me. "mom, I don't want to go out with her, she is pretty, but that's all she cares about, what she looks like and how much fun she is having"

I'm glad that at this young of an age my boy is not shallow, I wonder how much of his attitude has to do with what he has been through with his little brothers brain tumor, watching his brother suffer, at the brink of death, and realizing at a young age what the important things really are, or maybe that is just how he is.

Sometimes you have to tell your kid he's not so special

2008-04-03T08:37:00.005-06:00

Fish Food 2.5" x 3.5" mini ACEO Watercolor

We had a talk with Jimmy the other day. We were worried that he was getting a little spoiled. It went something like this:

Dad said "Jimmy, you aren't more important than other children"
"Yes I am, I had a Brain Tumor" Replied Jimmy.
"But, that does not mean you're special"
Jimmy said "Barney says everyone is special"
I explained "Being important comes from what you do, not from what happens to you."

What we are trying to tell Jimmy is that simply because he had a brain tumor and is "visually impaired" he can't expect that he should be treated any different than anyone else. He should not expect to work any less at life, actually he will probably have to work harder. I remember right after we were first told that Jimmy was legally blind I received a letter from my little brother who is deaf. He wrote "Don't ever treat him like he has a handicap, don't let anyone treat him differently, don't let him use it as a crutch."

The problem is actually Jimmy is special, he has been through some really hard stuff, he is incredible brave, strong and tough. And yet he is always cheerful and happy, we just want to keep him that way.