Hope in the Hospital

Hi Everyone,
I went to visit two heart kids the other day at the hospital. My mom and I make an effort to go and visit the kids and their families whenever we can because we know how much it meant to us when people would come to comfort us when we were in the hospital. Both were little girls. I had met the other one before and last time I saw her she was full of energy; pulling at my necklace and jumping up and down in my lap. The day I went to visit her though she was extremely tired and she had been sleeping most of the day. It was just another reminder that one day you can be full of energy and then the next feel like you had nothing left in you; especially for heart kids when they are already so tired as it is. She celebrated her birthday on Monday and her mom got teary eyed when she said she had been hoping she wouldn’t have to celebrate another one in the hospital. I gave the mom a smile and told her, “She is young and won’t remember this birthday anyways. But what’s even more important is that she got to celebrate a birthday period.”  

The other little girl I went to visit was a little ball of fire! If she didn’t have the IV in her hand at first glance you would never have known she was sick; until you took a closer look at her and saw her blue lips and fingertips. This little was running all over the place, not giving a care in the world that her IV was pulling at her. We sat down on her bed while my mom and her mom talked quietly and the little girl started to put stickers all over my face as we laughed and played with her SpongeBob doll. A nurse came in and took her temperature and then asked to check her oxygen with the small pulse-ox. She started to cry and say she didn’t want it. (The pulse-ox is just a small piece of tape with a light on it that is able to see the percentage of air you have in your lungs; it doesn’t hurt or anything.) As the little girl cried and said she didn’t want it, I couldn’t help but blame her. While she very well knew it wouldn’t hurt, she still didn’t want it. She didn’t want anything more on her body. She didn’t want anything more done to her. She just wanted to sit on the bed, eat her Doritos and play with her toys like any other normal little girl should be doing. But instead she is cooped up in a hospital room with an IV stuck in her arm and having people poke and prod at her at all of the day and night. I placed my hand on the little girl’s lap and asked her if she would put it on if I did. She said yes and told me she wanted me to wear it first, so I did. She clapped when the machine said my oxygen was at 94% and then she gladly helped the nurse wrap the equipment onto her tiny finger with a big smile on her face. This little girl’s oxygen was at 77% but she had just as much excitement and energy as any other little girl I have ever seen. Once the nurse left the little girl crawled into my lap and told me, “We both have funny hearts.” I held back tears and gave her a peck on the top of her head and said “Yes we do.” When it was time for my mom and I to leave the little girl turned to her mom and repeated with tears in her eyes how she wanted to go too. She kept begging her mom to let her go home. I know the feeling all too well. . . While I know that the hospital is the best place for me when I am sick, I never want to be in there. I never enjoy being in there as a patient. I remember in 6th grade I would cry to my mom and I would beg her to take me home. I remember telling her “Mom, I’ll even eat that horrible meat you cook if you just get me out of here!” I realize now though that my mom and dad hated me being in there just as much as I did. But I got out of the hospital and I have been able to live these past four years of my life like any other regular teenage girl. Gone to prom, went on Spring Break with my best friends and graduated from high school. I have no doubt in my mind that the two little girls I visited the other day will do the same.

Love and Hope,
Becca

You Can't Even Imagine


Hi Everyone, 
I was going through some of my old poems that I have written throughout the years today. I found a poem that I wrote this year for my creative writing class. The assignment was to write a poem about something that other people in the class would have no knowledge of. The teacher told us to write about something that other people may not be able to imagine themselves doing or going through. The topic I chose, was being terminally ill. Here is the poem: 

You Can't Even Imagine 

You can’t even begin to imagine
What it feels like
To know you are dying

You can’t even begin to imagine
What it feels like
To look at your parents
Knowing you may never see them again
Or how it feels to look around a room bursting with loneliness
And know that this place
This frightening place
Maybe the last thing you see before you die

You can’t even imagine
The horrifying embarrassment of having to ask your mom to help you to the bathroom
At age thirteen your strength is too fragile for you to even undo your own hospital gown
It feels as if you are back at age two
With your mom guiding you onto the freezing porcelain toilet then back down
Your dignity is stolen away from you because of your own body 

You can’t even imagine
Looking at yourself in the bathroom mirror
And seeing yourself for what might be the last time
The last time you see yourself and all you can see is your sunken eyes of sickness
The paper white complexion of a malicious infection eating its way through your body
Slowly swimming through your fragile veins and into your blood stream

You can’t even imagine
The sadness that consumes not only your mind
But every inch of your trembling body
When you see for the first time in weeks
Just how sick you truly are

You can’t even begin to imagine
The terror
Of having your life placed into the hands of someone else

You can’t even begin to imagine
The fear that overwhelms you when the mask is placed over your face
The plastic smell of medicine consumes your lungs
And you plead “please don’t let me die.”
You know that you are no longer in control of your life

You can’t even imagine
What it feels like
To know you may never wake up
From not only surgery
But also from this all too real nightmare 

In the class that I took we did peer editing. A boy who read my poem wrote me this: "I think you over used 'You Can't Even Imagine.' When I told my mom this she told me that his comments only proved my point even further of not being able to imagine what it was like to be chronically and terminally ill. Before you make a judgment on someone else, please try to picture what it would be like to be them. Maybe if we all walked a mile in each other's shoes, this world would be a much more understanding place. 

Love,
Becca 

Hospital Prom


 

Hi Everyone,

So about 2 weeks ago I went up to California with my mom and dad for a doctor appointment. Things are going good, nothing new except in about a year or two I will need a new battery in my pacemaker/defibulator. Other than that the only change is that I have some irregular heart beats but they aren't too worried about it.
At Lucille Packard Children's Hospital they have a school inside their hospital so patients that are either in the hospital or too sick to go to school can go to school there. They also allow siblings of patients to go to school there as well. It is part of the California public school system and has 1st grade through 12th grade.
This school also hosts a prom for all their students, not just high school; but everyone. The families of patients are allowed to come and stay as well; and even some hospital staff drop by to say hi and see what is going on.
Every year they pick a new theme for the prom and this year it was 'Traveling Around The World' The decorations were amazing! They made the Golden Gate Bridge, the pyramids, the Eiffel Tower and many more other landmarks for you to take a picture by. All the helpers were dressed up as either pilots or in traditional clothing from different countries. Along with dancing, food and crafts they also had gambling! (I must say, I am pretty good at Roulette and Black Jack!)
But what I love most about this prom is that no one is left out or judged. During my appointment they asked me to put on a Halter Monitor, which is a portable heart monitor. I wore it for 24 hours and I was able to take it off right before I went to the prom. I wouldn't have liked wearing it to the prom because it is itchy and TOTALLY did not go with my dress; but I know that if I had to, I would've much rather worn it to this prom than the prom at my school. The prom at my school while it was fun and I got to go with my friends, it was a snobby fake event where people judged one another based off of how they looked, what they wore and who they came with as their date. This prom wasn't like that at all. You could sit down and talk to anyone without feeling like they were judging you or making fun of you. This prom was for everyone. Whether you came in a wheelchair, with crutches’ or with an IV stuck in your arm; you were welcomed and loved for who you are. Wouldn't it be great if life was more like the Lucille Packard Prom? I think so.
Love,
Becca
 
My Life As A Chronically
Ill Young Adult
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