Journey Journal

Welcome to your Journey Journal!

In this book, you get to write down your feelings after each visit!

With every visit, write your age, and later you can see how you used to feel!

Have fun!

-Bridges Children's Hospital

This book belongs to: Calliope DiPadriss 

He/She is fighting: Cystic Fibrosis

He/She was diagnosed on: May 1st, 2016

He/She won the battle on:  -

1st Visit- Age: 9

Dear diary,

I am Calliope.  I have a sister named Penelope.  She is my twin sister! I have an older 

sister, Merida, and an older brother, Calvin.  I have my mom and my dad. I love them a lot!

My mom told me to start writing in this journal.  I’m supposed to write every time I go to the doctor.  

I got told I have a problem with my lungs today..  It means that I get sick more and that I need to see the doctor sometimes.  

Bye!

-Calliope   

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7th Visit- Age: 10

Dear diary,

I got home from the hospital today.  I was sick, and that wasn’t good. I’m also too skinny, and I need to have a tube in me to make me not skinny.  Dad said it is like eating without your mouth.

Merida is staying home from her middle school today to spend the day with me!  I wanted everyone else to be here, but they’re all too busy.

Oh, I gotta go put the tube in.

Bye!

-Calliope

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25th Visit- Age: 13

Dear Diary,

Hooray for pneumonia and almost dying!  What a great way to celebrate being a quarter of the way through 100 appointments because my genes are screwed up.  I probably contracted it at school, and now my parents are considering pulling me out. But I don’t want to be at a different school than Penelope.  She’s my twin sister! We can’t be split apart like that!

I’m also supposed to see the doctor more now.  CF is only going to get worse as I get older. And it really sucks that Penelope and I aren’t gonna live to be old twin ladies and die together at age 103.

Bye!

-Calliope

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27th Visit- Age: 14

Not going to say hello today,

Penelope and I just celebrated our 14th birthday.  I guess it never really clicked with me until today that this could easily be my last birthday.  I should live to be about 30 something. But I’ve had enough complications to realize “should” doesn’t mean “will”.  

Penelope knows it too, and we talk about it sometimes.  It’s hard for me to imagine it, but I think it’s even harder for her.  I just get to slip away one day, but she’s going to have to pick up all the pieces.  

Merida and Johnathan know it too, but it’s a very tabooed subject in our house.  Mom and Dad flip out if they hear us mention it. We aren’t even supposed to call “it” by name.

As much as Mom tries, my CF isn’t going away.  My doctor says it’s not “terminal” per say, but there isn’t a cure.

It just struck me as I wrote this that I could be almost halfway through my life right now.

Why do they even but a “won the battle” date at the beginning of this journal.  

Why

Why

Why

Why

I’m never going to be rid of CF.  Might as well just be a date of death.

-Call

__________________________________________ 

34th Visit- Age: 14

Welcome back to the show,

Penelope was just diagnosed with OCD.  Directly related to me. Anxiety build up turns out to have negative consequences.  My health has also taken a toll in the past couple months, but at least I’m still here!

But I’m not coming back in the fall for public high school.  Straight from middle school to online school. Computers can’t give you life-threatening viral infections.  

On a more positive note, Merida got accepted into a university in England this weekend!  

Penelope and I- that’s different.  We’re both sick in a way now, and it’s getting worse all around.  But, we just got to stay positive.  

Bye.

-Call

__________________________________________

39th Visit- Age: 15

What could have been my homecoming week was just a week spent half dead in the hospital.  Turned 15 while I was half dead in the hospital.

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40th Visit- Age: 15

Need to be on oxygen now.

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43rd Visit- Age: 15

I’m writing this while still in the hospital.  I’m not breathing on my own right now. It also turns out that my doctors are bad at whispering.  I’m not sure I’m going to be able to breath again.

Penelope has already missed three days of school.  Johnathon also missed it, but he can’t really stomach me in the hospital.  I think it’s something about me being hooked up to the IV, or the beeping of the monitors.  He stays at home more than here Merida is flying home from England, and is supposed to be here in a few hours.

Something about this one feels different.  I can’t even feel that I can’t breath.  

I’m going to call it twin telepathy, because Penelope knows it too.  She hasn’t left the hospital in two days, staying with Mom and Dad overnight.  Johnathan tried to be here for longer, but had to leave.  

My grandparents all live in the same town where my parents were raised, halfway across the country.  They absolutely despise each other, but booked the same flight with seats next to each other. They fly in around the same time as Merida.

My aunts and uncles have come and gone from my room.  My younger cousins are all scared by the equipment.  

I’ve noticed that people come in the room and speak soft words to me, and squeeze my hand.  Then they stand up, and hug the rest of my family like I’m already dead.

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44th Visit- Age: 15

Still in the hospital.  Most of my extended family has come and gone.  My entire family spends both day and night in my room now.  My grandparents have joined the crew. They even moved me to a bigger room.  

Nothing feels better.  Nothing sounds better. My body is slipping away from me.

I fall asleep every night with Penelope holding my hand.  It’s been ten days since I was admitted, yet we fall asleep together every night.

My family keeps me here, but Penelope keeps me here.

-Calliope

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45th Visit- Age:   

I love everybody in my life.

I love my life.

I love Mom.

I love Dad.

I love Merida.

I love Johnathan.

I love my grandparents.

I love my aunts and uncles.

I love my cousins, the ones I know and the ones I won’t.

I love my friends.

I love my teachers.

I love my doctors.

I love my nurses.

I love everybody.

I love Penelope, my other half.  

-Calli

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46th Visit- Age:  

I am not Calliope.

My Calliope passed away on October 16th, at 7:03 p.m.  I was holding her hand.

Merida and Johnathan held the other.  Mom and Dad brushed her face with their fingers, holding her head in their hands.  They kissed her.

My Calliope had asked for a DNR order a few days before,  We agreed it was best for her.

I will not forget that moment.  Her heart started faltering, dying.  We all knew that was it. She had a minute, at most.

She’d said a muffled, “I love you”.

Her doctor was in the room, and slipped off the oxygen mask, freeing her face.

My Calliope passed away on October 16th, at 7:03 p.m.  I was holding her hand.

I love you Calliope.  I love you.

-Penelope