It’s Been Two Years Now, & Things Are Different

Hi, it’s me.

I don’t have much to say here; there’s not anything that requires analyzing or detailed explanations, because it truly boils down to a few things.

The first surgical procedure I had was in May 2015. While in the OR, my mama called Make A Wish. She asked them what they could do for me. I woke up with no knowlege of her asking them.

I wonder why, sometimes – but others, I don’t. Make A Wish is associated primarily with kids with cancer. No doubt about it…pediatric cancer patients make up a huge portion of Make A Wish’s grants. But cancer is not the only illness someone may have to “get the Wish perks” – which, by the way, is a gross statement. It implies that someone’s physical suffering they’ve endured for years can be made up with a single “wish.”

I think that if my mama had asked me if I wanted to apply, I would’ve said “no, absolutely not.” I got diagnosed a few days after my procedure; everything went on hold & a lot of things happened at once. I was angry, sad, in denial – going through the first large grieving process of my life. I didn’t want to be associated with my illness. I was ashamed of it, & I was angry at it for taking away things that I wanted.

But – my mama did not ask me if I wanted to apply. She did the paperwork, got a doctor signature, & presented me with the open option: want it, or not? I thought for 12 hours; I really did!!!

I didn’t know how to feel about being “a wish kid.” Was I sick enough? Was I delicate enough? Isn’t this just for people who have terminal illnesses?

First of all: Make A Wish is not only for children/teens that have terminal illnesses; others can include Crohn’s Disease or any other progressive, degenerative or malignant condition currently placing the child’s life in jeopardy.” AKA: you’re eligible for getting a wish if you have any life-threatening condition & are between 2 12 – 18 years old.

At the time, I still was unsure as to whether I should accept. There was guilt, there was denial, there was fright. But for God’s sake, I wanted to meet a band who’d brought me joy & laughs when I was in hospital beds. I especially wanted to meet Harry Styles.

By mid-summer, I got a phone call that left me crying – I would go to a concert to see & meet them backstage.

What I experienced that day was a whole 24 hours of pure, unfiltered joy; excitement, nerves, & happiness.

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I stayed in the room with the boys for about 15 minutes. That was more than I’d ever thought I’d get – & I left clutching a piece of paper with a doodle on it, after gifting Harry a scrunchie.

Today’s the 2-year anniversary of the day I met One Direction (sounds like a YouTube storytime title). I am a very, very different person.

I’m skinnier, I have less hair, I feel like I’m being crushed sometimes. But I have the same smile, I have the same flashes of joy, & I am years wiser. I have grown to love & accept my sexuality. I’ve learned not to even blink when an IV needle is threaded. I go into surgery with no problem (I do come out crying). I’m more world-weary, I’m tired, I’m sad.

My illness took a lot from me the past year. It took some relationships, friendships, & dreams right out of my hands. I can no longer play violin professionally (see why here). That broke me. Many things have broken me the past two years. It is why I dance outside in the sunrise; it is why I stay up at night, wondering what will become of my future.

Like I said – things have been snatched from me these past two years. I was violently dropped on the floor of adulthood at age 17 when I was hospitalized then diagnosed. It’s influenced the way I behave, the way I act, the people I associate with, & a lot more.

People have told me pain gives you an old soul. Maybe so – maybe not. But something that’s kept me going these past few years is bringing my mind back to those photos in that special file on my computer. I see how happy I looked in the photos; I can sense how joyful I felt. Every time I remember that, I am reminded that life can be cruel, horrible, terrible…but there will be flashes of sunshine. Some will last a long while. Others will be brief. But the 24 hours I spent preparing for “my Make A Wish” & then actually experience it are hard to beat.

I felt joy, love, & acceptance from people I’d never met before; from people who hadn’t known I existed. These people were ones I looked up to, & they treated me with the utmost kindness & respect.

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Before I left the room, I asked for Harry to draw me a small tattoo. He did. I fought for about a year to get it, but I got it. It’s a positive reminder on my body that this was something that happened…to me!!!!!

Don’t get me wrong: I know I’m still sick. That wish did not cure me – no wish can cure anyone.

However…I felt the thing that I believe Make A Wish wants the children & teenagers to experience: happiness, no worries, & yes, pure joy for however long their wish lasts.

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I have a reminder on my body, but I have more vivid ones in my head. I don’t believe that I would be sat here writing this if I hadn’t had a wish – I don’t know what I’d be doing at all, actually.

That’s kind of my point, though: I know some of you came for the One Direction photos. They’re amazing photos & I love them. But it means a lot more than some posed photos – it means that I can experience horrible things & still have joy in my life – & that my life is worth living because of those fast, fleeting (or beautifully slow) moments of joy.

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So, thank you to those who’ve followed my journey these past few years. It is still very surreal to me. Thank you to everyone new who found me through chronic illness, photos on Instagram, or any other social media. I hope I’m able to provide you with some comfort by trying to reassure chronically ill people of their worth, especially young women. If people hadn’t initially reached out to me on social media because they found out I was a “Make A Wish Kid,” who’d met One Direction, I highly doubt I’d be speaking so openly about my illness. I felt like I had something I could give to people; something that would help people. It took a lot for me to step up, but again – in time, I was able to proudly say I’d met them through Make A Wish, after working hard & trying to accept the labels “chronically ill” & “disabled.” Thank you for listening to me & reaching out for support, or giving me support. I appreciate it so endlessly!

Thank you to One Direction! Thank you to Harry Styles. Thank you to Make A Wish – I needed what you so graciously offered me, & I am so glad I accepted it. It’s something that has a special space in my heart.

I’m just very glad to be sitting here writing this right now. Thank you, thank you, thank you. To all the sick people out there wondering if they deserve a wish, let me answer the question: Yes, you do. You deserve that times a million.

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A special thanks to my mama, who knew exactly what she was doing when she secretly called Make A Wish. It would not have happened at all, were it not for her phone calls & endless support. I love you.

Love,

Sof ❤

If you’d like to donate to Make A Wish, you should do so here! If you think you’re eligible, trot on over here.

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