Rhana.

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I took this picture above, almost 2 whole months ago. It was September 1st at 11:43am.

This day will forever be painted in my heart, in my soul, I will remember this day… for always.

Rhanas family and friends all gathered for her funeral at her grave site, next to a beautiful body of water.
Let me tell you, it was raining… HARD. Pouring. It matched all of our moods perfectly, I must say.

I sat across from her mom and I was right next to one of Rhana’s best friends, Jody… We held hands. No words were needed. Everyone was standing around a small tent, with big bright umbrellas. All close to each other.
Another one of Rhanas friends insisted that he HAD to hold my umbrella so I wouldn’t get wet. It was an amazing service and about half way through, I see Cheryl (Rhanas mom) look up. Rain was dripping right on her tattoo and then pouring down her spine. The only hole in the ENTIRE tent, just right above her mommas head, perfectly placed.
She bursted out laughing and all of us laughed with her.
Before Rhanas funeral, I had felt very tense, very at edge, just off. I felt sad, and I wanted to sob every second. I wondered why? Why do children die? Why did Rhana die? Why? Her wake the day before, hurt my heart so bad, I wondered why so much more… Then, as I watched that tiny rain drop, drip right down on her mom. I felt a rush of calming, I had goose bumps. The same kind of calming I felt when I first met Rhana.

That rain drop?

That was Rhana.

Fierce like that down pour.
I knew right then and there that she’s okay, and everyone else did too. I’m gonna be okay, all of us are.
I truly do believe that, that she is okay. She is running, skipping and jumping rope. She’s dancing and doing cartwheels. She’s free and she can be anything she wants to be.
I know that you aren’t gone, you are the winds that blow, the sparkles of snow that is yet to come, the sunlight beaming down on my cheeks, you are the gentle autumn rain, you are the soft stars that shine each night. You are not gone, you did not die. You now live eternally within everything and anything beautiful. Just like you were here on earth.

(Rhana had Transverse Myelitis just like I do. She was 15, only 15-years-old. I wish I could bring her back, just give her more time, you know?)

So…I wanted to say this to you.
Dear Rhana,

I think of you everyday, whenever my mind wanders it goes straight to you… Always you. I won’t ever stop talking about you and your life, I will for forever, tell every new person I meet, all about you. I’ll tell them how fully you lived and how you loved so deeply. I wish we could’ve talked more, I wish I tried harder to always be there.
I really really miss you and although we didn’t talk as often as I wish we did, I know you loved me and I hope you know I loved you. I have since the moment I met you at HSC 3-1/2 years ago.

Anyway, I think of you every time it rains (or now snow!) and now, when a rain drop, drips onto me? I hope it’s you. I know it’s you.

I’m going to try to come visit you and your pond really soon and your mom is going to show me around Rhode Island, hopefully before it gets too cold. It already snowed here in Connecticut a few days ago.

I’m sure you already know but… Rhana, you are incredibly missed and I’d do anything for you to come back… as I said before, but it doesn’t work that way, unfortunately.
So l’ll leave it here… as I always say- see you soon, my friend. Until I see you again, I have great peace knowing you’re doing cartwheels and running fast, fast as you can. I know there’s no more pain, no more paralysis, no more hurt, and that you’re painting such beautiful pictures, just as you always did, but now, you can paint with your fingers again!

I am permanently, forever changed by you and the beauty you brought to such darkness. I love you and I always will.

-Alex

 

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I’m different.

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I’ve always known I was different. I really didn’t know how.. Or if it was a bad different. I was 8 years old when I met Chris, he’s amazing. I love him so much, he’s taught me so much without knowing. He’s in a wheelchair too. At 8 years old I knew that bad things happened to people, I knew that if someone “looks” different it doesn’t mean they are. I knew what paralyzed meant at 8 years old.

Fast forward to 5 grade. A boy liked me a lot, he was super nice. He was mentally impaired. I didn’t care, I was still his friend. Everyone would make fun of him, and it would make him cry and I would always tell him it’s okay, I’m different too. He would write me love notes, get me small gifts. Keep in mind I was in 5 grade I still thought boys were gross. I would get made fun of because of being his friend, but he didn’t have anyone else. I didn’t want to be his friend because I felt sorry for him. I was his friend, because he was different. Like I knew I was. He was genuinely nice also. He wrote me a letter right when I came back to school after I got TM. I still have it. His mom didn’t tell him what happened to me, she was afraid he’d be so upset. Which he was, I didn’t explain what happened. He didn’t care he still thought of me as me.
So now I’m in 10th grade I KNOW I’m different.
I’ve seen things and been through things kids don’t.
I know that I’m not untouchable. I know bad things happen for no reason, to healthy people. Accidents, tragic things. I know kids die, I know kids live  in hospitals.
Most teenagers think they can do anything without anything happening. But you’re not safe. My body attacked ITSELF. I did nothing.
I’m also different because I see things differently.
I’m not like every 15 year old.
I can’t be, I don’t want to be.
I know when people are lying to me, I’ve always been able to know.
If someone’s mean to me, I’m not mean to them. Kill them with kindness.
Sure there’s people I don’t like, but it’s immature to argue with people.
“You’re wise beyond your years” I get told this everyday, multiple times.
I appreciate everything, sure I complain. I can do that.
But I appreciate the small things. I think before I say something about another’s feelings. Not everyone believes what I do, thinks like I do, seen things like me. Once you realize this you’ll get along with more people. What I’m trying to say is I know I’m different. I’m loud, wise, sassy, I speak my mind, I’m honest, I try my hardest. I know reality. I face it everyday. I wake up and my chairs next to me. I don’t remember what it’s like to get up and walk. To feel my legs, to do things without thought. This isn’t a bad thing, I like challenge. I like being different.

(sorry this is all over the place!!)

FAQ!!

🏃

  • What is your full name? -Its Alexandra Renee Berube. I just like being called Alex though.
  • Birthday & age? -It’s 1/19/98  that makes me 16.
  • Favorite color? -purple and orange!
  • Grade? -10th.
  • What is Transverse Myelitis? -A neurological disorder where there is inflammation across one or two segments of the spine. In my case, two. Here’s a link for more info.. http://myelitis.org/symptoms-conditions/transverse-myelitis/
  • Siblings? Yup… 3 brothers (Matt,16 (he’s my twin) Nick, 19. Perry (PJ) 23)
  • Mom and Dad? -Jeff and Rena
  • Can you walk at all? – Nope, just with leg braces. But I can’t get up and walk around.
  • Where do you live?? -Connecticut.
  • Sports? -Tennis, swimming.

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