One more day

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

*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

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.

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

Colored Easter Eggs

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

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

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

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

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

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

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

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

How do you do it?

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

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

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

Raingutter Regatta

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

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


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

growing and shrinking

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

watch it kid.....

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

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

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

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

Did I mention that September is childhood Cancer Awareness month?