Very Moving

Yes, I have been putting nothing but blah and sad things on my blog, but it has been a very sad and tough week.
Today was Clarissa's funeral, what a beautiful service. I was amazed at the strength of her family. Each of them spoke or participated somehow. They all spoke of her as determined as well as spiritual. The oldest girls, ages 16 and 13, gave tributes to their sister and I thought I was listening to adults. What love and adoration they had for her. The music was beautiful and the flowers were gorgeous. They had pictures of Clarissa everywhere and video of pictures of her growing up. Her metals and soccer trophies were displayed as well as her pictures playing. It was a difficult but yet healing to see her family so strong. Here is a poem that was printed on the back of the program that was written by Clarissa's 13-yr old sister.

I know that you've been asking
"Why did God do this to me?
I've been told that I'm his daughter
Who he loves so tenderly.
If that's the case
Why can't he just
Make it go away?
I know he can,
I've got the faith,
And yet, the tumor stays."

He is aware of all your suffering,
And he listens to your prayers.
It breaks his heart, as it breaks mine
When you think he doesn't care.
He's just sending his love-filled blessings
In a different sort of way.
He blesses you through others
Through the presents, and every time they pray.

So don't ever feel like he doesn't care
He just knows what is best
He wants to help;he knows you're strong,
And this is your life's test.

-Jocelyn Packer

A very sad, sad day.

This morning our neighbor, Clarissa Packer (age 11) passed away. She had a brain tumor, the same kind as Marcus, that was inoperable. She went quickly, which is a blessing for her, I guess. She was brave and such a trooper. She went out with her family everywhere and when she was given her wheel chair she mainly pushed it. She was just given her hospital bed this last Monday, that same day she wanted to go for a walk. So she and her mom pushed her wheelchair for over a mile! Tuesday she wanted to climb a tree, so her tiny little mom helped her up into a tree. (she has been blind for a few months)Yesterday she slept a lot, but was pretty coherent and was able to tell her family what she wanted to say and gave them things. She passed this morning. What a gift to be able to spend your last week doing the things she wanted and not having to sit in a bed for weeks like a vegetable. I know that she had been asking her mom if it was ok to pray to Heavenly Father that she could die quickly. Her prayers have been answered.

I just added this.... Here is the website with her obituary and photo. She was a beautiful girl. www.allenmortuaries.net

Make a Wish canceled.

Well, as I told you before the airplane crash was a bad incident, but after talking it over we decided that he really isn't mentally able to go up in that plane. His behavior has been a little better, but we just don't know what will happen minute by minute. We thought he would be very upset about the fact that we canceled it, he took it rather well and decided that he really doesn't want to get himself in that position. I am sure it scared him because it was 2 experienced pilots went down and no one knows why yet. So now we don't know what he is going to do. We do need to go in June or it will be a long time before we can really go anywhere because of Marching Band. He is leaning toward the Pearl Harbor trip, which would be a great for everyone and a much more safe thing too. Unless he decides to go parasailing!!!! Of course we all are pushing for the Hawaii trip, but it is up to him.

Breakdown.

I am afraid that we have more on our hands than we can handle. I always say the scariest day in my life was the day they told me Marcus had a brain tumor, well Monday tops it, well... pretty darn close.
Sunday things were not really great because Marcus had promised me that he would go to church with us, and when it came time to go, he wouldn't get out of bed. Well, when we got to church we talked to our Bishop. He decided to come over and give Marcus a blessing. Things after that were so great. Marcus was so much happier, until monday after his Therapy session. I had to go to the store to get a couple of things. He went to the toys and wanted all kinds of stuff, very expensive too. When I told him no, he put his earphones on and headed for the car. All the way home he kept gripping his fists more and more. By the time he got home he went in his room and slammed the door. Normal thing nowdays. I put on some of my musice and began to clean up dishes. I heard some banging around in there. I went and peeked at him and he was just sitting on his bed starring out the window. So I went back to doing dishes. I heard a couple more bangs in there and a crash. I waited a few minutes, then felt like I should go check on him. When I walked in, there was a book (my book) ripped to shreds, his picture of Jesus broken lying on the floor in its glass, his favorite Uof A basketball flattened and smashed. As I looked at him sitting on his bed starring out the window, he had a rather large pocket knife (that he uses fishing) stabbing the matress right next to his leg! I called his name and he didn't respond. I walked out slowly and called John (who was at soccer practice at the time) He then came running home. After I hung up with John, I went into his room and asked him where his knife was and he pitched it backward (while it was open).
Luckily, a person in our bishopric, is a psychotherapist. We are seeing his partner, but we couldn't get a hold of him, so John call him (who happened to be at the same soccer practice) so he came over. Talked to him for a few minutes and decided that he was O.K. to leave him at home.
The Dr. diagnosed him with Intermittent Explosive Behavior. Because of the hole in his brain where his personality is, his brain is trying to re-circuit his wiring and unfortunately the more he has these outbursts, the more ingrained it is. Which explains why its getting worse. Unfortunately the only way to get him calm enough to learn ways to re-circuit to a better place, is through medicine which he is refusing to take. So I am afraid that this is going to end up with some tough-love, and I will have to call the police next time he even gets close to that again. If it ends up in court then thats where we will end up. I will never go through that again! I was scared for him, Jackson and myself. I am tired of him controlling the whole house, and if he refuses to take the medicine then he will just have to explain it to a judge. I know that is a horrible thing to say, but I am sorry, I will NEVER let him do that to me or anyone else again. I have been considering threating to take away his Make a wish trip if he doesn't co-operate with us. I could understand if he was on meds and they weren't working, but this is in his hands and he is refusing help. I will just have to get tough with him. We can't do this anymore. Its not fair to the rest of the family, especially the boys. I thought the cancer was hard..... that is looking a little easier right now.

I am just sick!

I belong to a group (online) of mothers who had babies in Jan. of '02. We have known each other since pregnancy of our babies and we still remain friends (over 6 years). Well, one of those mothers lives in Peoria, Az. She knows about Marcus's Make-A-Wish where we will be going to Mesa, Az. for Marcus to fly in Aerobatic planes and learn to dog fight. I found a post from her upset because one of those planes crashed on May 9th killing both people on board. She wasn't sure when we were going to be there, so she thought it could have been us! She posted the article and it is the exact company that we are going to! I am just sick to my stomach...literally. I really don't know what is going to happen with our trip that is scheduled for June 5th, but I don't think we will be going!

Anyway, here is the article from the Arizona Repuplic:
(here is the link if you want to watch the video about it)
http://www.azcentral.com/news/articles/2008/05/09/20080509planecrash050908-CR.html

A small aerobatic plane crashed about seven miles east of Phoenix-Mesa Gateway Airport, killing two people Friday afternoon as the crew of a medical helicopter watched.

Kore Redden, a spokeswoman with Rural/Metro Fire Department, said a crew aboard a LifeNet I helicopter saw the single-engine plane go down in the desert, then circled and landed to see if they could help.

She said the two people on board were already dead from massive trauma. A Mesa Police helicopter flew Queen Creek firefighters to the remote scene, where they confirmed the fatalities.
Redden said the victims, both men, were found 10 to 20 feet from the wreckage with one parachute deployed. Mike Minter with the Pinal County Sheriff's Office said the two-seater plane nose-dived into the desert floor about five miles northeast of Ocotillo and Schnepf roads.

The Extra EA-300 single-engine, high-performance plane had left the airport at 12:43 p.m. They were returning to Mesa when the plane crashed at about 2:30 p.m. under unknown circumstances, said Ian Gregor, a spokesman for the Federal Aviation Administration. There was no communication with air traffic controllers prior to the crash, he said.

Redden said the aircraft is owned by Fighter Combat International. The company's Web site said it is based at the Mesa airport and offers thrill rides ranging from $469 to $1,574. The Web site touts the service as "The Ultimate Guy Gift."

John Walkup of Chandler Air Service, a flight school company at Chandler Municipal Airport, said the company had carved out a niche selling specialty rides.

"That's all they do is take people up for rides and do special things," he said. "Those airplanes have the ability to do every maneuver known to God times ten."

Walkup said the Valley is a hotbed for aerobatics.

"The entire aerobatic community will be very upset," he said. "They have a job to do and they've been doing it well for quite a few years."

Brian Sexton, an airport spokesman, said the company has been a tenant since 2003.

Minter said the crash site had rough terrain accessible only by four-wheel-drive vehicles or helicopter.

Another Long Day.

Marcus got home from school and went to play basketball with his friends. He was gone over 2 hours and said he got along just fine, but he did trip and land hard on his side. He said he felt pretty dizzy so he came home. Life after that became a nightmare, snapping at everyone who walked into the living room, threatening kids and just being nasty. I let him on the computer to do an assignment for school, he got ticked off at Aaron for something stupid, so 10 minutes later he logged off the computer and decided he wasn't going to do his homework. Didn't like what we were having for dinner, didn't eat. It just got worse from there.
We are supposed to go on our Make-a-wish trip on June 5th, and no one is excited about it. It is so hard to be excited when the person getting the wish is being mean and nasty. I hope something happens before this trip.

We spoke to his Oncologist and she referred him to Neurology. I called to schedule an appointment and they won't see him because they don't deal with behavior issues. There is not a "pediatric neurospychologist" in the state of Utah. We are paying up the butt for Marcus to see these Dr.'s and they all just seem to be not sure of themselves. One had an idea to change behavior by rewarding for good behavior with kinda a "gambling" type of thing. He is never sure when he is going to hit the jackpot. But my husband and I can't find any reward that he wants.... money doesn't even motivate him! He has refused taking any medication and won't co-operate with any Dr. Nothing is his fault and has no remorse for anything hes done.
I just read an article about a girl from Arizona who suffered a concussion and had horrible personality change, and brain injury issues. She was diagnosed and had all kinds of help. HELLO??? Isn't there anyone who deals with that around here? Doesn't anyone in UTAH ever have head injuries and have treated them? I feel like the Dr.'s are just shrugging their shoulders, handing him a pill, or guessing on what they can do for him.
All I know is I can't live this way, my kids cannot live this way. My poor kids follow me around the house cause they dont' want to be left alone with him. I am just at my wits end and don't know where to go next. Each day he gets more and more stubborn, mean and hateful. Everything is about him and if it goes any other way, he takes it out on someone. I am afraid for the safety of my kids. What has to happen before there is really someone that can help him? If something happens, and he ends up in Juvee, he will be a helpless cause. He will soon be 17 and I am so scared of his future. I don't know if I am more scared of the cancer coming back or what will happen to him (or someone else ) if he doesn't get help.

Better day.

I am feeling better today. Marcus went to his Marching band "step off" meeting, which is for this upcoming year, and he is very excited about it. So he came home with a skip in his step. I am hoping this helps! Music is his "thing". ALSO.....
Yesterday, I started a new fitness/diet program that is just "in the making". Icon Health and Fitness here in town, (they build treadmills and other fitness equipment) are coming out with a new program for women. They haven't named it yet, but they are thinking about calling it P.i.n.K. I have the opportunity to try this program and give my input for them to see what things need to be changed etc. There is a group of us that are doing it together and we get to work with a Dietitian, and a personal trainer! Debbie is a 40-yr-old woman who is the world Olympic weight lifting champion. She is the one working with Icon to develop this program. So, as you might imagine, it is using the Olympic weight-lifting concepts and fundamentals. I am so excited because it is all strength training. I LOVE IT. I have been a firm believer in strength training, (of course I haven't done it in YEARS) but now I can actually get to do it.
One thing they encourage is telling people about my new program, that way it keeps me "accountable" as to what I am doing. So here I am, telling you about it. I actually started a new blog just for my program if you want to check it out, go for it.
www.mypinkexperience.blogspot.com

Lost!

I haven't really updated on what else is happening in the real world here. The reason for that is because it hasn't been the best. Even though these past things (the Pilot for a day and the party) have been fun and exciting, things at home are still pretty rough and ragged. The 4th medication that we were going to give Marcus, I kinda had second thoughts about, but when we decided that it really wasn't an option and we should try it, he refused to take it. So...... he is refusing to take the medicine, and he hasn't had a lot of outbursts, but he still has hit Jackson a few times. Everything is a battle, from doing homework to even taking a shower. We are still meeting with the Psycologist, and trying some new behavior changing techniques. John has a very hard time with the new plan and is not sure if he can do it.
I miss my Marcus. I walked by his picture in the hallway today (pre-cancer) and just sat down and cried. I just long for his fun loving spirit and the love he had for his brothers. Don't get me wrong, there are times where he does try to have fun with his brothers, but they are afraid of him. In an instant, for some stupid noise or something annoying someone is doing, he is gone. How I miss him. I hate cancer, I hate what it does to kids and families. I hate that we will never have the real Marcus back. I just pray everyday that the Lord will find some way to comfort and give our family peace.

My true color

What's Your True Color?

My Result: Blue

You're blue — the most soothing shade of the spectrum. The color of a clear summer sky or a deep, reflective ocean, blue has traditionally symbolized trust, solitude, and loyalty. Most likely a thoughtful person who values spending some time on your own, you'd rather connect deeply with a few people than have a bunch of slight acquaintances. Luckily, making close friends isn't that hard, since people are naturally attracted to you — they're soothed by your calming presence. Cool and collected, you rarely overreact. Instead, you think things through before coming to a decision. That level-headed, thoughtful approach to life is patently blue — and patently you!

What are you?
http://web.tickle.com/jumpto?test=colorogt&c=50652