To kids in the hospital, this is what I still want you to know

To: Kids who spend time in the hospital

From: Aliana (As told to Lauren Brill)

Thursday (1/28) at 7:30 pm ET a plane crash survivor and cancer survivor will chat with us about why he is so lucky

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To kids who spend time in the hospital,

This year is challenging for us all, but I know that it’s especially difficult for you. That’s why it’s important to me that I get my message across to you, even if I can’t relay it to you the way that I want.

I know what it’s like to be in the hospital. I know what it’s like to feel sick and angry.

Born two months early, I came into this world with three holes in my heart. Around age seven, I started to get sick frequently. My parents brought me to all these doctor’s appointments. Initially, they thought I was just a kid who got sick a lot, but I kept getting these infections: pneumonia, flu and strep, among other illnesses. Finally, we saw an immunologist who diagnosed me with a rare primary immune disease called Common variable immune deficiency (CVID), which makes me highly susceptible to infections.

By age 10, I was regularly at the Connecticut Children’s Medical Center, the same hospital you are in right now, receiving infusions to boost my immune system. I didn’t completely understand what was happening. Sad and confused, I always wondered why I couldn’t have a normal life – why I had to deal with this condition while other kids were outside playing or hanging out with their friends. As I received my treatments, I would look outside the window at the blank and dark sidewalk, known as the pad. As I stared at the concrete, I felt completely hopeless.

Sad and confused, I always wondered why I couldn’t have a normal life – why I had to deal with this condition while other kids were outside playing or hanging out with their friends.

But over time, I started to change my attitude.

When I was younger, I hated the IV’s they would put in before my treatments.

I would always say to the nurses, “This isn’t going to work.”

And then, of course, it wouldn’t work. Looking back, I realize I was putting negative energy into the world.

Now when I get my IV, I am like, “Whatever, go for it.”

I can’t remember the last time they had to do a second poke.

Aliana created “Aliana’s Rocking Party on the Pad” when she was ten years old.

As I matured, I learned to accept my situation. In the process, I realized that I never want you or anyone else to experience what I felt when I looked outside that window.

I wanted to find a way to help all of you stay positive through your worst moments.

One day, my mom was scrolling through Facebook and saw a post about Chalk the Walk, an initiative to spread inspiration and joy through sidewalk chalk. Chalk the Walk gave me an idea. Six years ago, when I was ten years old, in partnership with Connecticut Children’s Medical Center Foundation, I created “Aliana’s Rocking Party on the Pad.” I lead a group in writing inspirational quotes on that empty sidewalk. This way, when you look through that window, you are filled with uplifting thoughts.

Through the years, some of you have been able to come down to the pad and write quotes and pictures with me. Some of you couldn’t leave your room, but you sent someone down with what you wanted to be drawn or written on the pad. Many of you told me the messages helped you, as it allowed you to forget what you were going through at the time. One of you even told me it was the best thing to happen to you in your life because it was the first time you left your hospital room in six months.

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In August, we were supposed to do a big event, filling the sidewalk up with quotes for my 16th birthday. It would have been our sixth year rocking the pad. Unfortunately, because of COVID-19, we had to cancel.

But I am writing this letter because when you look through that window, I still want you to know that while it’s OK to feel sad, you have to stay positive.

I still want to remind you that it helps to be grateful when you are having a bad day. Think about whatever it is in life that makes you lucky. For me, I feel so thankful for my friends and family, who are an incredible support system.

Also, I still want you to remember you are only in this moment for a short time. Today’s struggle will pass and you will have a life beyond your worst day at the hospital.

The first two quotes I wrote on the pad six years ago were, “She turned her can’ts into cans and her dreams into plans,” and “Stars can’t shine without darkness.”

All of your dreams are possible and even though life is hard, you can still shine through all of the adversity.

This year when you look out that window, you might not see those quotes written colorfully on the sidewalk but, I want you still to feel its impact  – I want you always to feel hope.

Keep pushing forward!

Feel better!

Aliana
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