I Cannot Help But Feel Cautiously Hopeful…

I had a great time with my youngest sister yesterday!  We haven’t gotten to spend much quality time together since my family was torn apart in 2012…but recently we’ve been bonding– amidst and despite our family’s dysfunction– and I can’t even tell you how much its meant to me. We had a really cool conversation around 2am. It started when she asked about my feeding tube. Not in an “ew gross” or otherwise insulting way, but she genuinely wanted to know what “happened” and why I went from being a healthy, normal kid to a sick teen/adult. She asked about the ins and outs of Ehlers-Danlos Syndrome and how it affected/will continue to affect my life. The whole conversation, never once did she make a judgmental remark or tell me to stop talking. Despite living with me for extended periods since I became sick, she honestly did not know much of anything about my illnesses until that point, and it was truly a sweet and special moment for me…although that may sound weird to some. Prior to recent weeks she and my other sister Kerian have had nothing but nasty, degrading comments, spoken with the intent to hurt me. And they’ve succeeded. Both can be incredibly mean-hearted and they know how to be manipulative and hit a person where it hurts (especially Keri). But this conversation with Bre tonight, plus all the fun we’ve had lately talking and joking, driving around, swinging at the park, watching Supernatural, and just being sisters has my heart so full: I cannot help but feel cautiously hopeful. I find myself praying and pleading with God that this lasts. Regardless, I am thankful for these past weeks and I love my lil ginger sis.. ❤

Nobody Wins When Everyone’s Losing

You know those songs that just capture your attention, reach into the depths of your soul & shake you to your core?  Yes, that was a very dramatic introduction– I’m aware. 😉 But this particular song, “Not Meant To Be” by Theory Of A Deadman is definitely one of those songs for Keri, Bre & I. When everything was in a chaotic spiral & we would find ourselves so far in Borderland we didn’t know that we’d ever again see the light, there wasn’t much that could help us (or, anyone caught in the path of the storm). But this song– one step forward, two steps back– every single word is/was SO relatable & relevant to our situation. And I’m not sure if it’s that it empowered us or simply validated our feelings, but somehow, singing it always made it easier to breathe.

It’s never enough to say I’m sorry
It’s never enough to say I care
But I’m caught between what you wanted from me
And knowing that if I give that to you
I might just disappear

Nobody wins when everyone’s losing…

[Chorus:]
It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, I can’t change your mind
I know it’s like trying to turn around on a one-way street
I can’t give you what you want
And it’s killing me
And I, I’m starting to see
Maybe we’re not meant to be

It’s never enough to say I love you
No, it’s never enough to say I try
It’s hard to believe
That’s theres no way out for you and me
And it seems to be the story of our lives

Nobody wins when everyone’s losing…

[Chorus]

There’s still time to turn this around
You could be building this up instead of tearing it down
But I keep thinking
Maybe it’s too late

[Chorus]

It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, baby I’m sorry to see
Maybe we’re not meant to be…

Crying Is Not Weakness

It’s been exactly 5 years since I wrote this piece & posted it on my old blog. It’s crazy how this feels like ages ago & just yesterday all at the same time. I’m not quite where I want to be yet…but I have truly come so far.. 🙂

“A few weeks ago, I went to the movies with my friends to see Extremely Loud and Incredibly Close. Everyone around me was bawling her eyes out, yet sitting there watching this heartbreaking movie, I could not shed a single tear. I, too, felt sad…I wanted to cry…but regardless of how my heart ached and my thoughts raced for the little boy, my face remained dry and stoic.
Too many times when things were crazy at my house and the tears would fall down my cheeks, my mom would scoff and say, “I’ll give you something to cry about,” or push me aside with a, “Why are YOU crying, you little bitch? I’M the victim!” I grew up afraid to cry. And not only was I fearful, but resentful. I was angry at the woman screaming in my face- I didn’t want to give her the satisfaction of seeing me break down. I didn’t wanna let her win. I didn’t wanna show weakness. I would do everything I could to act like her actions didn’t bother me. But too many “it doesn’t hurt”s, and “it’s all good”s can really affect a person…

This may sound a little crazy, but one of my most treasured memories is the night I ran away, one of God’s angels (let’s call her R) and I were having a heart-to-heart on the bench in her meditation circle. I had just hung up with my dad…who was yelling and crying and who basically told me life as I know it was about to be over. And of all of the beautiful, wonderful, comforting, inspirational things R said to me that weekend, one that sticks out most in my mind was when she put her hand on my knee that cold night on the bench and said, “Please let yourself cry.”

Please let yourself cry? Please let yourself cry! It finally hit me. I am only human! I am allowed to have emotions…I am allowed to cry. And so I did. I sobbed and sobbed into her shoulder until it was so dark outside we couldn’t see a foot in front of us. And you know what? As broken as my heart was and as embarrassing as it was to have trails of mascara running down my splotchy face, it felt good. It felt really good.

Do you, too, have trouble allowing yourself to cry? Has “crying is weakness” been drilled into your head one time too many? Well, guess what…whoever told you that was wrong. Crying is a sign of humanity, and regardless of what you are told or how you are treated, you have a right to express your feelings just as any other human would. Honest tears cleanse your heart and soul and relieve tension. And crying is certainly not a sign of weakness. Someone really special to me once explained it like this: Nature gave us two ways of showing our emotions, laughter and crying. Crying is not a sign of weakness just as laughter is not a sign of strength.

So, grab the tissue box and let yourself break down once and while…you’re allowed… ❤

With Love,
xLiveOutLoudx”

(February 2012)

October 18th

One thing that used to frustrate us the most about our mother was her obsession and hang-up over dates.  I never quite understood why, for example, we were expected to behave a certain way on the anniversary of one’s death.  Don’t we miss the person the same that day as we did the day before?  As we will the day after?

However, October 18th is always a day that will always elicit a moment of somber reflection.

On this day 4 years ago, my sisters and I became wards of the state of North Carolina.  That crisp October morning, we were summoned to a meeting that consisted of our parents, grandparents, family friends, social workers, counselors, psychiatrists, and school principals.

We entered that room with fears, doubts, and heartbreak, sure…but we went as a single unit:

Hand-in-hand.

Three as one.

United by a lifetime of hurt and violent chaos, but also by a fervent hope that somehow always managed to sing its quiet song amidst the storms we weathered…

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October 18, 2012

But we left that meeting completely different people.

We were forced on yet another dark and winding path, but unlike the roads we had travelled in the past, this one split in three.  We were all forced to navigate alone- stumbling along scared and blind- with no hope of getting back to where we started and no promise of an end.

We would never again be the same…

“You’re So Brave!”

There are many instances of my life that haunt me. Rhetoric that plays over and over in my head like some sick tape I cannot escape. Actions that color my dreams, jolting me from nightly slumber. However nothing makes me quite as sick as the innocent words of my then 13-year-old sister, remarking on my self-harm:

“…I tried [to cut myself] but I couldn’t do it.  I wanted to but it hurt too much.  You’re so brave!”

Hearing those words took my breath away.  I was 14 when I started- not much older than she.  It was my heavy, shameful, long sleeves in July secret for 3 miserable years.

Cutting was not brave, and that self-destructive path was certainly not what I wished to model for my little sisters. It’s been more than 4 years since she uttered those words, and while they still shake me to my core, they also push me to keep fighting, to not give in to temptation, and to show her what bravery truly is.

1 Year

It’s been 1 year since I got kicked out of my parents’ house.  This year has been a wild roller coaster of ups and downs (more downs than ups, if we’re being honest here)…but I have grown so much.  Getting kicked out was hard…and being guilt-tripped and begged to come back was even harder…but I made it.  I didn’t give in and didn’t turn back.  And now my relationship with my parents is better than it has been in years.  Things were really rough for a while, but we’re all 1 year stronger.  Who would have guessed?

REX Hospital (Mis)Adventures

IMG_3409So, here’s a little story about when I went to REX hospital to get a new feeding tube placed after losing mine earlier this week.

First, a little backstory: When it fell out (more like when it was RIPPED out as I fell down the stairs), I covered the stoma in a sterile dressing and headed straight to WakeMed North where I met Hillary. I straight up asked the nurses there if this was something they were equip to handle, and they suggested we head to REX instead where my surgery was done. I thought that sounded like a great idea, and so off we went.

We waited in the REX ER for hours before they brought me back. It was another two hours of lying in the bed until they informed us they had no idea what to do and that I should just call my surgeon in the morning. I asked if they would contact the on-call surgeon or at least give me something to stick in my stoma so my newly-established tract would not close, but they offered no help and said it should be fine. New to the feeding tube world, I did not really question their judgement. I mean, these were doctors…at the hospital in which I had my surgery…they knew what they were doing, right? So off we went back to College Inn. In the morning, I called my surgeon’s office, and was scheduled to go to Interventional Radiology today (July 30th) so they could slide a new tube in.

Upon arriving at the hospital, they got me registered, started an IV, hooked me up to all the monitors, and rolled me in to the ‘operating’ room. I was transported on to the table and strapped down. It wasn’t until that point that someone decided to remove the bandage to see what they would be working with (aka my stoma/intestinal tract). The doctor carefully peeled back the bandage…and then I heard him curse. He began yelling at the nurses and other physicians & technicians in the room, demanding to know why no one had checked this before.

The stoma and tract was so new, it had completely closed up!

Guess what that means for me? Yet another major laparoscopic j-tube surgery, as if the first one never happened at all. I have to go through it all over again, just because the ER wouldn’t help and thought it would be “okay” despite my objections and pleading for a second opinion.

The above picture is our “wtf, really?” faces from when we got back in the car after this whole ordeal. I tried to laugh and joke about it at first, but now that I’m back at the apartment and alone, I cannot help but cry. The fun just never ends…