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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Acceptance..

I’ve never let people staring, get to me.

I think it’s perfectly fine if a child is staring.
 They’re new to the world. They don’t know. I look different, it’s obvious.
If your child is staring at a person who has a disability, do not yell at them to stop or pull them away.. It makes them feel like they should be ignoring or scared of someone who looks JUST LOOKS different..
 
Kids will ask “mommy, why is she in a wheelchair..”
They do this because they think their Mom knows the answers to everything, which is so funny to me.
 
And if you simply say “her legs don’t work like yours..” That’s enough for some kids.. 
As the get older they want more real answers.. you should let them ask questions.
I always answer questions as simple and as truthful as I can.
The key is to make them not feel afraid of someone who looks different or moves differently then they do.
If you’re an adult I don’t think it’s okay to stare for a very long time.. Its fine if you glance at me.. but 20 times? 
And if you really are curious to know more about me, you can feel free to come up to me and ask me questions..I have no problem answering anything. 
I’ve also noticed people who notice that I see them staring never smile.. If you smiled at me, I promise it would make this situation not as awkward.
We all just want to be accepted.. Wheelchair or not.
People sometimes feel uncomfortable and ask weird questions.. 
One time my mom was getting my chair out of the car and a lady asked “is that for your mom?” And my mom replied by saying “no.. My daughter.” And I waved from the front seat.. 
People stare at me most when I’m getting into the car or out of it.. 
In the grocery store I find people staring the most.
I was trying to get something on a high self and I was throwing other things at it so it would fall..
 And I turned around and 5 people were standing there in awe.
I have a shirt that says “it’s a witches curse..” 
And I one time said “I’m in it for the parking..” And like 3 people shook there heads..
Haha, we only use the parking because we NEED it. We need the space. Do not park in handicapped parking if you don’t need it.. We would walk the extra 30 feet if we could.. So remember that.. Next time you break the law to go into the store faster..
 
Please don’t talk to us like we are babies.. I am a teenager who is probably smarter then you are!  
Don’t pat my head, or push me when I continuously say that I can do it
Do ask questions, do educate your children at young ages.. 
They need to know that not everyone does things in the same way. 
We aren’t different then you.. And don’t want to be treated as we are..
We are just sitting and you are standing..  That’s the difference.. 

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