Tuesday, December 29, 2009

There is Always Always ALWAYS a Story Worse than Yours

There is never a tomorrow, there is only today. There are 24 hours in a day. There are 60 minutes in an hour, making 1,440 minutes in a day. There are 60 seconds in a minute, making 86,400 seconds in a day. That's not that much. What do you want to spend your life--day doing?

Life is about giving because, as I have said before, there is always a story worse than yours. Do you have a good life? I know for a fact that you do, because if you are reading this, it means you have enough money to have a computer. Millions of people aren't as fortunate as you.
Yesterday I was at my monthly clinic appointment to make sure my kidney was doing okay, and I was outside in the hallway, reading about other kids' stories. There was a poster about the Make a Wish Foundation, and a girl who had some type of cancer had wished for a computer, while another child had wished to go to Disneyworld. These things to us are memories. "Oh, remember last Summer at Disneyworld!" and "My stupid computer! I have to get a new one..." We shouldn't take these things for granted.

I also saw many fliers on a skin disease called EB (Epidermolysis Bullosa) which is a very painful skin disease. Up to 75% of a child's body can be covered with painful burn-like wounds, except they will not heal. It is a very rare genetic disease. When I was on dialysis, I had a bandage over the H.D. catheter. Every other time I went to dialysis, they had to change the bandage to lower the risk of infection. That was the most unbearable pain I had ever had in my whole life. With the EB disease, bandages over wounds most be changed daily, and the child must bathe daily as well. Their wounds hurt so bad, that even walking can bring so much pain. Children can't walk, ride a bike, or even simply wrestle with their fluffy dog. There is a kid, named Shane Digiovanna. I don't know him, but I was looking up the disease and I saw his story online. He has it off pretty bad. See the URL for more information below.

So why did I tell you about this? This is only one of the billions of weird diseases that you or someone you know could have, but doesn't. Most of the world goes about their daily day, not liking their life because of the dumbest things. Remember that there is always a worse story than yours.




Copy and paste this to see the website.
http://www.cincinnatichildrens.org/about/patient/epidermolysis-bullosa-shane.htm

Thursday, November 12, 2009

Question of the Day

What can you do today to inflence tomorrow? What if there isn't a tomorrow. What would you want to tell someone before it's too late? It only takes one breath to change someone's mind about the day. (For better or for worse. Think before you talk)

Friday, October 30, 2009

Tuesday, October 27, 2009

How do I put this in nice terms...

How do I say this without sounding mean....but...really, if you're ruining your friend's day by going on and on about your terrible life...shut it! There are hundreds of thousands of millions and billions and gazillions of kids and adults who have a million times worse lives than you. One of my partners in crime at the Ronald McDonald House in Palo Alto, Jacklyn, also had a kidney transplant. While I was down in Palo Alto yesterday getting an IV infusion, my mom and I ran into Jacklyn's mom. She is the most talkative person we know..and she only said a few things.
After we asked how they were, she responded,"not too well, back in PICU." That was all she said. (PICU- Pediatric Intensive Care Unit.) At that time, my mom and I didn't know exactly how bad she meant. After a transplant, if you're back in PICU, things aren't looking too good. It's very sad. Be Thankful you have working organs.

Everyone has a story. What's yours? There is always a story worse than yours. You must remember that there is always a worse story than yours. What's the worst thing that has happened to you? For me, I would say nothing. Now, ofcourse I am not saying my life is perfect. I have had a successful heart surgery. My surgeon told my mother, "I can definitly fix her heart. I'm not sure if I can give her her life back."
I had a spinal fusion. They put titanium rods in my back to make it straight. I have had a successful kidney transplant. My aunt saved my life. Too add to all of that, I have juene syndrome. Oh, and I have a narrow rib cage, so it's harder for me to breathe. My life is pretty great. Why don't you look at your life that way sometime? Compared to lots of kids, I have a great life.

I know of a girl who has a liver problem. Her immune system attacked her liver. She had stomach problems and flu-like symptoms for about 10 years. She is in the hospital right now, she won't talk or eat. I remember talking to her dad at Ronald's house and he said he hopes they[the doctors] find what's wrong with her.

So, think now: Do you have a good life?

Thursday, October 22, 2009

Clinic

Right now I am at one of my weekly clinic appointments. I come here to make sure that everything is going okay. Any minute a doctor is going to walk in... I hope I don't get introuble for using the computer...haha.

There is a little girl here who has a feeding tube. There is a boy here whom I've seen before. I know he had some kind of transplant, but he never talks. Every day we should be thankful that we are free. Not controlled; not always at the hospital. Before I had my transplant, I was on dialysis. We tend to take it for granted that we were all born with working organs. Working hearts, kidneys, livers...And yes, even intestines. I know of a little boy who was in need of intestines.

Us humans, in day-to-day life, get mad or frustuated, say things we regret, and sometimes ruin our whole day over the littlest things. It is very ridiculous. I also know of a little 6 year-old boy. When he was 4, he had a liver transplant. He lives in Hawaii, and now he is 6, 2 years later, and he needs another liver. Most adults complain. They have no idea that some kids have more understanding of life, and much, much more stressful lives then them. Please, next time you run out of gas, your cellphone runs out of battery, or you get called for Jury Duty...remember, while you're getting called for Jury Duty, some kids are getting called for chemotherapy.

Wednesday, October 21, 2009

Introduction

Welcome to this blog. It is full of my thoughts and day to day activities. Now, let me tell you something about me. I have jeune syndrome. This makes my shoulder to elbow bone, and hip to knee bone shorter. So, obviously, I'm not the tallest person. If you don't understand, I suggest you leave before you embarrass yourself. I have also been through a lot. I had open heart surgery when I was three years old, a spinal fusion surgery when I was ten, and a kidney transplant when I was 13. So, if you like to complain that your bluetooth isn't working, or you gotta booboo, you should also X out of this. I am very positive and honest. You will learn new things in this blog you have never thought of before. Hope you like it!