Archive of ‘Sisterly Love’ category

Just Your Average Bibliophile

By Natalie

IMG_0532As a child my mom would offer to pay me a dollar for finishing one of my many American girl books. I’d skim through them but remained completely uninterested. I had yet to read a book that sparked my imagination. Somewhere along the way that spark eventually caught fire to something deep inside me. I finished a book I was forced to read for school finally feeling that sense of accomplishment that couples with reading a book cover to cover. After that I was hooked.

There’s a series of books and events that I believe have lead me to become the reader I am today. This is that story.

In fourth or fifth grade I read Out of the Dust. The book captured the dryness of the 1930s dust bowl through the fictional eyes of a little girl. I still remember the desperation of the people during that time and I remember the strained relationship the little girl had with her father. I completed a project on the book which entailed summarizing the story and its characters on a poster board folded book jacket. I was proud of myself for not only finishing the book and project but for allowing myself to become engrossed in the words on every page. I’d found a new love for reading. I received a C on that project. I remember that vividly because my teacher hung each book jacket on the ceiling above our desks. My big red C spun above me for at least a week and I wondered where the disconnect came. I loved the book. I tried my hardest to emulate that through my work but it didn’t translate, at least to my teacher. As much as I could have let that discourage me I continued seeking new worlds through thousands of pages.

Sometime after that I read Homeless BirdThat’s the first book that opened my eyes to the wonder of different cultures. Which remains a favorite genre of mine.

Following Homeless Bird I had to read Esperanza Rising for school. I encountered my first book block and didn’t actually make any headway on it until I found my sister at the kitchen table one day with the book in her hand. She’d just finished it and encouraged me to read it. Soon after that I flew through the pages all the way to the end. Then and there Nadir and I had our first book discussion. Our first of many. She loaned me The Bean Trees which I read one hot summer spread across the living room wingback chair. Wingbacks truly are the best for reading are they not? The Bean Trees was my first true adult novel and I devoured it.

I moved on to the Secret Life of Bees which kept me wanting more out of stories. On to The Sugar Island which taught me that although I didn’t particularly care for a blah story, reading was still reading. It remained my favorite pastime always leaving me hungry for more. Nadir at some point when I was in High School finished A Bend in the Road by Nicholas Sparks. I have this vivid memory of her stepping out of her room with tissues in hand. Tears steadily streamed down her face. “I finished it.” She muttered. “It was so good.” She said as she continued to sob. That Nicholas Sparks. He’ll get you every time. It was then that I realized just how much emotion could come with this new hobby of mine. I want to feel that rawness I thought to myself. I want to become so engrossed in a book that I can’t contain my emotions. I want them to change my perspectives. I want them to blow my world apart and step in someone elses shoes while my eyes remain fixed on their words.

IMG_0529

Nadir read Memoirs of a Geisha, then she passed it on to me. This was the first time I truly became attached to a story’s characters. Feeling their pain and wanting more for them.

[Spoilers]

“I don’t want Sayuri to be with Nobu!” I pleaded with my sister. “She loves the Chairman. Tell me she ends up with the chairman or I won’t finish it.”

Nadir smiled and encouraged me to open my book back up and keep reading. I came across my first complex characters in Memoirs. As much as I wish to explain them to you here you simply won’t understand until you read the book yourself and form your own attachments. This book completely broke my heart in the best and worst ways.

If it weren’t for Nadir’s encouragement or vulnerability I might not be the reader I am today. The people around us truly shape who we are whether we choose to believe that or not.

Soon after Memoirs I read The Lovely Bones which left me angry. Every page was painful to finish leaving me feeling so out of control just as the main character of the story had been. I wanted to rip her from the pages. I wanted to write a new story for her and erase all of the horrible parts. I wanted justice for her. Every few chapters I’d walk into Nadir’s room furious. At some point I’m certain I even threw the book across the room. She lay there, bright blue cover begging for me to finish her story out. Ultimately I was left unsatisfied with the ending. But something greater had happened in my world of reading. I’d felt it all now. The full spectrum of emotions that authors invoke upon their readers.

Since those days I’ve read dozens of books. Goodreads pushes a reading challenge each year which has helped me to keep up with my reading regularly. You can catch my most recent reads below ↓

2016 Reads
2017 Reads

Perhaps it’s because I only read two novels last year, but this year has been loaded with Fiction. Fiction is the literary vacation and I’m enjoying it while it lasts.

You’re probably thinking my reading material is rather eclectic which would be absolutely correct. Generally I’ll reach for anything from dystopian, to classic, to cultural fiction, to a good honest memoir. I am however always up for reading anything recommended.

If you’re curious what has been added to my ever growing To Read list you can check that out here.


Giving a Voice to an Invisible Illness: Part 2

By Natalie

You can read part 1 to this post here. You can also read similar posts here, and here.

image

Do you ever feel scared? If so, what about specifically?

It’s scary when I hear about Lupus sufferers experiencing damage to major organs as a result of a flare. Chemotherapy treatments for severe symptoms, the reality of this incurable disease becoming fatal and the risks involved with pregnancy. Would I have complications? Would I be able to handle the inevitable exhaustion of caring for a newborn? I worry about my husband having to take care of me more than he already does and a baby. Will I have to reevaluate my career in teaching and eventually leave the profession because the responsibilities and stress take a toll on my body?

 What do you want people to know about you, and your illness?

She sighs

Good mornings may turn into rough afternoons, and evenings as symptoms are sometimes unpredictable. I’m healthiest when I choose activities carefully and pace myself.
It’s sometimes lonely because I feel people just don’t understand what Lupus is or what it’s like to live with this chronic illness. I don’t get to live my life the way that I want to.

I wish people could validate what I’m going through and knew that I’m fighting harder than they realize. It’s hard for me to articulate what I feel or need because I know I usually look fine on the outside. They have no idea that I go home after a long workday completely drained of energy and utterly exhausted. I’m often unable to enjoy life after work or on the weekends because my body needs rest.

I don’t get to live my life the way that I want to.

Lupus sometimes forces me out of social events. I have to explain to people that I can’t take part in a party or celebration. Having to reject requests to spend time with others due to my health always brings along some sadness and guilt. I don’t want people to get offended or annoyed, but I get tired of explaining my issues to others. However, I’ve also learned that if I am to expect a broader understanding from those around me, it’s important to honestly vocalize what I’m going through so others can empathize.
I also don’t want to burden people. I feel bad and push myself because I don’t want people to think I’m taking advantage of them. For example, after Nadir’s baby showerHosted a baby shower for our sister my foot was hurting really bad and I was feeling fatigued. Sean asked, “What would you do if you could get up right now?” I appreciated his willingness to help, but felt obligated to limp across the room and start cleaning. I struggle with not wanting to feel useless. It’s important for me to still feel useful. I need to feel like I’m still serving a purpose.

How can people be most helpful?

Encouraging words. If there’s something physically to be done while they’re around. Motions around the home.
It’s easy for people to forget because I try to look good on the outside.

How does having lupus affect your future?

Nem: I don’t know if we’re ever going to start a family. I’m getting older, and to change the dynamic of our family is scary. Would Sean end up caring for our child? The new normal requires that I keep up with medications, and pace myself. I’m not supposed to overexert myself.. I need to get enough sleep. It definitey restricts me.

Sean: You know, it’s kind of a lose, lose situation. Either we don’t have kids and later regret it, or we have kids and risk Nem’s health. It’s why for so long we keep avoiding the subject.

What have you learned?

I have so much more compassion and understanding for people living with a chronic illness or other health issues. I don’t always feel strong and courageous, but I hope to inspire others with my story. Raising awareness and knowledge empowers me and gives me a voice!
I’ve always been pretty self sufficient, so it’s been hard, but I’m learning that it’s ok to accept love and compassion from those who care enough to ask me how I’m doing. I deserve the support, sympathy and help that others offer without feeling any guilt.

I’ve become more educated about the illness and I’m learning to listen to my body so I guess you could say I’ve found a new normal which reduces some of my fears. My quality of life has drastically changed because of Lupus, but it’s all about perspective! Although I have physical limitations at times, I will probably always have to take a bunch of medications, and experience emotional ups and downs.

I’ve learned to value the blessings in my life so much more now! My faith and the incredible support system I have in my family and friends, keeps me going and I’m so grateful! God still has a plan and purpose for me and it is good! I try to embrace life one day at a time and not let setbacks hinder me from dreaming and setting goals. Faith has always been my life’s anchor and I know that God is STILL in control, even when I feel like my body and circumstances are out of control.

Summer So Far

By Natalie

Laura came to Charlotte for a week. Which meant we essentially had the opportunity to have a mini staycation while we showed her all around town.

Wednesday

We went to a Knights game, where we ate our fill of peanuts and cracker jacks.

image

After the game we ran across the street to Romare Bearden Park, cause I had been wanting to visit. And the lights out there were just too magnificent to pass up. imageWe tromped around through the grass, past a black lab chasing after a light up ball. Past some guys doing a little meditation, and past the color changing waterfall. Silly things happened at Romare Bearden. Some very silly things. image

Thursday

Carowinds is essentially in our back yard, so we decided to spend the day there. And it was hot hot hot. Which is why logically we stood in line for a good 30-40 minutes for this white water rapids ride. Oh yes, we did. It’s part of the experience.

image

imageFriday

How lucky was I to have a buddy spend the day with me on my birthday??

We ran a few errands before heading to breakfast at my favorite brunch spot uptown (where I succesfully parked on the street! Go me!!), only to realize they only serve brunch on the weekends. Womp womp.

After peeking at the lunch menu we decided to stick around for the chicken salad sandwiches, and run to Amelie’s after for our coffee fix… and we had a couple macaroons there too, not gonna lie. After a long totally soul satisfying girly chat on life, and futures we ran over to Freedom Park, to show Laura some of Charlotte’s green.

Once B came home we all got ready to go to my birthday dinner at Fahrenheit. Which was not only a delectable dinner and dessert seated on the 21st floor, but right outside was this spectacular view.
image

image

image

Saturday

We hit up Mama’s Coffeehouse for breakfast so Brandon could nail this pano of us behind every door. And so Laura could leave her mark in Charlotte. imageimage

image

How sweet is that? ↑


Pause for these little cuties.

We went on a much too long, so long I may have developed blisters on my feet walk along the greenway.

You see, the thing about this greenway is that it doesn’t loop, So I keep walking, and walking, not wanting to turn back too soon. And that’s how we ended up strolling for 3 miles. But deep down I really don’t mind it, because there is something about the sippy cups in the back pocket, swaying next to the baby wipes. Something about a morning stroll through the trees that really makes me feel like a true nanny.  image


The Thursday after Laura flew home my sisters came for a visit, which was a bit of a surprise since I was originally expecting Nem, and our mom. Mom stayed behind (Don’t worry, she’s here now!) so that Nadir, and Norah could suprise me for the best ever belated birthday present.

That’s right. My niece’s first road trip was to see her Titi!The auntie version of Tia, if you don’t already know.

And we had some beautiful sister time that I had been craving… which p.s. how odd is it that now we have this fourth member to add to our girl clan? Norah!! You have Rodriguez girl in you.

imageAnd yep.. we like to bring our guests here. It’s our fave coffee spot, can you tell?

We met up with Mandy and little G so all my family could meet eachother. And it was perfect. imageimageYou’re about to find out that I have a thing for babies wrapped in blankets. Perhaps I should have my baby in the winter..imageimageNorah went to the mall with us!!! And she did amazing! Even when her Titi’s took too long in the dressing rooms. She just went along for the stroll, happy to be a part of our very first foursome shopping spree.

imageNorah wrapped in the blankey I made her. ↓ My first time sewing with satin binding. Not too shabby eh?

When I rocked this sweet girl to sleep I couldn’t help but stare at those sleepy little eyelids of hers. Thinking to myself how innocent and pure she is. How small she is. How she has no idea how many people love her so much. And all I could do as we rocked was pray for her. For her precious mind to be guarded, and her innocence to keep. For her to feel the love around her, and to give her parents the strength, and patience to raise her.

Sleeping babies, they really get you thinking.

imageWhen Norah’s not power napping she’s working out those cheek muscles and giving out smiles to those who are worthy. Go on Norah take us out with a smile!

GOOD-NESS My heart is melting. image

Life Lately…

By Natalie

2015 is rolling right along, and so much has grabbed my attention, that I thought I’d give you a quick recap of Life Lately. Hang with me, we’re goin fast!

image

My beautiful sister Nadir gave birth to her first born last month! I’m amazed by my sister’s strength, and overwhlemed with the beauty of a woman’s ability to go through pregnancy, and childbirth! It’s alot of work to bring life into the world! I was so excited to visit just a couple days later to share in their blessing.

imageNorah did not dissappoint. She’s pretty stinking adorable, and she’s leaving the whole family smitten with love for her. Passing down my crown of being the youngest isn’t half bad.

image


School is almost out! Which means I get to see more of this cool kid ↓↓

Bring on the summertime fun!

image


If you follow me on Instagram you know I found the best Farmer’s Market ever!  On Saturday I excused  myself past people to grab a giant 34 cent carrot.. Have I grown up, or have I grown up?

My first visit I stood over baskets of strawberries with giddiness in my eyes, because those strawberries were tantalizingly bright red, and gorgeous. After the man who proudly grew them noticed I was interested he said, “Go ahead and try them there strawberries.” Tickled by his accent, and guiltlessly wanting a taste I picked up a little red guy and bit just below the green. And it.. was.. the best dang strawberry I’ve ever tasted.

The next week when I asked B to tag along he insited we grab a cantaloupe. But once we got to the pile we stared at the cantaloupe, and then at eachother. How do you pick a good cantaloupe? There’s so many rules to ripeness.. how will I possibly remember them all? This one’s too green.. this one’s too hard.. this one doesn’t smell strong enough.

“I think you smell the butt.” I said to B.

To which he replied. “But they all smell so good.”

“Whenna you gonna cut it?” An older man asked, noticing we were in need of assistance.

“Umm probably today.” I said. Then he proceeded to grab at the cantaloupe, and handed us a good one, and moved on. And it was a GOOD one.

image

Cherries just like the ones we’d pick off of the tree when I was little. How could I pass that up?

When I was 2 or 3 I’d galavant through the backyard with cherries in hand, and when my mom asked me what they were I’d say “Gwapes” and she’d say “They’re Cherries!”

image

Plants!!! call me crazy, but I had no idea there’d be more than produce, and fresh flowers at the farmer’s market. I stared at an oversized pot full of Elephant Ears as tall as I am, for 10 minutes. Deliberating… Because, I really, really, wanted those guys in my home. But, I settled for a hanging pot of succulents to accompany the bedroom window. And really, can you go wrong with succulents?

image

Speaking of plants…

I found this precious nursery not too far from where I work. imageI wasn’t expecting too much, but once I walked in I followed the sign for houseplants, and I stepped into this beautiful haven. Mhmm I’ll take one of each pretty please.


During a casual Wednesday morning trip to Jo-Ann’s with little Grant I spotted this fabric, and could not get over how it had our entire living room color scheme. After getting a couple feet cut for a bunting I grabbed some matching bias tape, and whipped out my coupons. Because Jo-Ann’s ALWAYS has coupons. Total for this DIY was five dollars! [And lots of leftover scrap fabric for other projects.]image

When I got home I popped in an old musical, and got to tracing, cutting, and sewing.

Since we’re living in a rental I’ve been using as many Command hooks as possible to avoid holes in the wall, and it hasn’t been too big a deal aside from the fact that I miss our curtains. But this bunting has been a stunning alternative!

image

image


In case you wondered..

Bingley wanted to say hello.

image


Oh! And I thought you’d like this pretty decent little drawing we spotted on our table at Mama’s Coffeehouse. image

Life’s been pretty sweet huh?

Giving a Voice to an Invisible Illness

By Natalie

Since my sister Nem’s diagnosis with Lupus I’ve been wanting to chat with her about her daily struggles, in order to share her words to give friends and family a better understanding of what she is going through.

During a recent trip to Fredericksburg we finally had a free moment to talk over breakfast about her life with Lupus, and what she so simply descibes as her new normal.

This woman I spoke to, she’s another version of the sister I grew up with. In some ways I’m reminded she’s the same, but mostly she’s different. She’s tough, she’s disciplined, she’s faithful, and she isn’t going to let any old illness take control over her life no matter how extreme it attacks her body. No matter how invisible.

rp_image15-1024x682.jpg

When were you diagnosed with Lupus, and what was your immediate reaction?

On September 24th 2012 I was diagnosed with Lupus as a primary disease, & Sjogren’s Syndrome as a secondary disease. The doctor told me on the phone that I had a positive ANA test which meant that I had autoimmune activity going on in my body. I went to a Rheumatologist for more blood work, and she told me I had Lupus and Sjogren’s.

I immediately started taking PlaquenilA common Lupus medication. My initial reaction after the diagnosis was shock. Sean called while I was in the pharmacy waiting on my prescription. He asked how the visit went. It wasn’t until that moment that it hit me, and I just started crying when I told him I was diagnosed with lupus.

What are typical daily tasks that you find yourself unable to do?

I have good days and bad days. After 2.5 years on medication, several detox diets, and learning to listen to my body, it’s gotten better. At first, I wasn’t able to complete my Saturday morning routines of running errands and cleaning my home, I had to discontinue rigorous exercise, and I often wasn’t able to make it through a work day. 
My new “normal” requires that I actively listen to my body and rest when needed so I don’t wear myself out. I need to get plenty of sleep and reduce stress as much as possible. If I don’t, my body will go in shut down mode, leaving me unable to do anything. I’m always reminded that Lupus is there even when I pretend it isn’t. Whenever I push myself, I always pay the price.

I was devastated because I’ve always tried to maintain a healthy lifestyle by working out and watching what I eat, but my efforts couldn’t have prevented what was going on in my body. I didn’t do anything to cause this, it just happened and there was nothing I could do about my body attacking itself. I was relieved to finally have a diagnosis after months of not feeling like myself, but I wasn’t prepared for the emotional distress that it caused. I soon became depressed and continually grieved for my old life. I would see people on social media living their lives (fun outings, working out, etc…) and I made myself miserable by comparing myself to others. People were doing what they wanted to do while I felt helpless and unable to live my life fully because my body simply wouldn’t allow me.

What is your body feeling at those times when you’re helpless in need of rest?

One of the big issues of life with lupus is its unpredictable nature, meaning one day I can feel like my old self, and the next I just want to stay curled up in bed all day with extreme fatigue. It’s not like a sleepy or tired fatigue, but one of weakness. Like when you have the flu, and your whole body feels heavy and achy. I also get joint pain in my arms, wrists, hands, and legs accompanied by muscle aches. This discomfort and weakness has left me unable to walk at times. It can make my body feel so tired that I sometimes just want to cry at the thought of doing one more thing, or meeting one more obligation. I’ve also experienced nausea, GI issues, insomnia, and frequent migraines.

A flare can happen at any time and be brought on by a variety of triggers. It could be a busy weekend, eating certain foods, staying up too late too often, stress or long hours of work can eventually trigger a flare. Other times, it seems to happen for no apparent reason at all. It can be mild or severe, and it’s impossible to tell which it’s going to be from the outset of an attack.

As there is no current cure for Lupus how much medication are you required to take daily to maintain a healthy lifestyle?

Right now I take 16 pills a day including supplements to keep my immune system up. I take medications to manage joint and muscle pain associated with Lupus flare ups.

About six months after my initial Lupus diagnosis I was diagnosed with Fibromyalgia. I take medication for that as well.

How has your diet changed since your diagnosis?

A stricter diet has significantly added to our grocery bill. I eat raw and organic as much as possible with very limited amounts of processed foods.

How have people treated you since you were diagnosed?

At work, my coworkers have united in supporting me in every way possible. Being an elementary school teacher I have to walk my class to their encore classes, lunch, and recess. Teachers in my grade level have walked my class to and from these places, written sub plans when I couldn’t make it through a day, and my principal has even driven me home a number of times when I felt unable to walk.

I’ve really realized I have such an incredible support system. I know my family prays for me a lot, and checks up on me, and wants to know how I’m doing. Several months after I was diagnosed when you signed us all up for the lupus walk in D.C., that was a really big deal to me.

The love box. (A box full of goodies, homemade creations, and encouraging words Nadir and I put together each month.) Means so much to me.

How has it affected your marriage?

A few months after my diagnosis, Sean and I had the biggest disagreement we’ve ever had. I was frustrated as we discussed the delay in our plans of starting a family due to my illness. I was still processing my feelings and was angry that our plans had to change, but I didn’t realize I was taking it out on Sean until he said “I’m not the enemy here. Whatever you need, I’m here no matter what! We need to take care of you right now and worry about this later.”

He cooks and does a lot more housework since I’m not always physically able to handle it all anymore. He’s understanding, and encouraging when I’m feeling down or thinking it’s going to be this hard forever. He reminds me that “It’s just a bad day. We’re going to get through it and soon we’ll be celebrating a good day.” He also does a good job of communicating with me about my physical and emotional state. Because it’s an invisible illness, he can’t always tell if I’m trying to tough it out and so he always asks how I’m doing. 
He is helpful, often reminds me that he loves and supports me, has a positive attitude and his hobbies serve as an outlet that keeps him balanced which is good for both of us.

How do you feel it has affected your family and coworkers?

I think it’s made my family sad. I think it’s made my family feel helpless. But at the same time I think it’s also given my family the opportunity to love on me.
My coworkers feel helpless also, and it means alot to me when they offer to walk my kids to specials, or lunch. When they ask me how I am. For them to offer their support makes them feel like they can do something. Sometimes I don’t know what to tell my family I need. That’s why the love box is meaningful. Sometimes all I need is an encouraging word. Acknowledging that I look ok on the outside but not on the inside.
I take it one day at a time.


Nem and I also got a chance to chat about what she’s learned with Lupus, her future, and what she wishes people understood about her illness.

Stay tuned for that post coming soon!

To My Sisters

By Natalie

imageIt’s been six months since we’ve built a new life for ourselves in NC, and I have to admit that I’m a tad surprised this post wasn’t written sooner. These months that we’ve spent apart have begun to stretch my relationship with my sisters.

Lately… I’ve been thinking about them. Wanting to call, with no particular thing in mind to talk about. I’ve been feeling the definite absence of them. Yep, I downright miss those girls.

I spoke to my middle sister just days ago, for one quick thing. She answered the question I had for her, and promptly said she’d talk to me later. A sudden bleakness swept over me. “That’s it?” I thought. I checked the clock, who told me it was only 10am. Nadir was in the middle of her workday. Our conversation ended there, left out on the line, to be picked up another day. The phone calls, the texts, they’re too short, too little, how will they ever be enough?

Isn’t it interesting how I have a single friendship with Nadir in which we discuss our love for the elizabethan era, books, crafts, and how we can better support our other sister. And I have a completely different friendship with Nem in which we often discuss recent events, marriage, work, and our new niece arriving in May. I’d imagine that they too must have a similar friendship with each other that I know nothing about. I wonder what that must be like. Then there’s the bond the three of us share when we’re all together. Where all of our similarities mesh, and the pieces of one heart are expressed through three different personalities.

The fact that you’re stuck with your sisters is what makes them such wonderful friends. Whenever they annoy you, you’re forced to figure it out. Much like a marriage, only with more moodswings. If you’re lucky enough to have two, you’ll often find that the other sister takes up her duty as middle man. Always there to bring you each to your senses.

“Sure Natalie.” They’ll each say. “She’s just being herself, you know how she is when she’s tired, hungry, upset, annoyed, hurt… and fill in the blank”.. And it’s true. I do know how they are in all of those scenerios. Because I’ve been looking up to them since I was small. I know how they act, and react. I know what they look like when they don’t do their hair in the morning. I know that Nadir has always been ready to be the mother she is becoming, and that Nem falls asleep easiest on the couch with a blanket. It’s a beautiful gift, to know someone so closely.

I’ve been writing some open letters lately. It’s my way of being certain that the one’s I love know they are not forgotten. It seemed necessary to write one for them.

To you both,

The relationships we have with one another are the most complex relationships I think we’ll ever have. Our pasts have been intertwined. Our presents separated, and who knows what our futures will entail. But the three of us, we’re made up of the same things.

When we had no else, we had eachother. And of course the occasional Dairy Queen blizzard to make things better.

Thank you for helping me down the slides, literal playground slides, and figurative life slides. For all those special years we had together, as I’m sure we can all admit living with a guy just is not the same. For protecting me as if I were your own little cub to care for. For aggreeing with me when I need someone on my side, and for hitting me with the truth when I’m blinded. For guiding me, and encouraging me. For teaching me, and being proud of me.

With love and longing,

Your baby sister

Weekend in Pictures

By Natalie

Do you ever have those weekends where you finally get a chance to sit Sunday night, and you wonder “What on earth did I do all weekend?” Mondays are not my favorite. I can’t imagine they’d be anyone’s favorite. It’s not so much the going back to work part. I enjoy my job. It’s the leaving the family behind part that I really dread. After a weekend full of love, and events with family I find it difficult to muster up the strength to lock Bingley up in his crate for the day, and drop B off for a similarly long day.

This past weekend was beautiful. It was hot, after all it’s June. Welcome summer. We missed you.

photo 1 (2)

My weekend started off with a long trail walk next to the Bug. Should I mention he is huge? There was a time when I could pick him up in my arms, to walk the poor little stinker out in the dark in the wee hours of the morning. And then he grew. Faster than my eyes and heart could handle.

Friday

Oh Friday night. How my young heart feels you should be honored as the king of weekend happiness. But my married heart of 3 years remembers… It’s just another night. And we’ve worked all week. We’re kind of tired. And Friday night, we enjoyed you in our dating years. We still do. But these days we seem to enjoy you more in the comfort of our own home. Is that so bad? Enjoying your Friday night freedom in our pjs, watching Netflix, with maybe a bag of popcorn, and a soda.

Saturday

image (1)

I headed off to Richmond with the fam for a very important event for all of us…

photo 3 (1)

The 3rd annual 2014 Lupus Summit. We spent the day becoming more educated on my sister’s illness. The summit included several doctor’s who were so gracious to provide their time to help loved ones better understand this autoimmune disease, and all the treatments that are out there.

 photo 4

As hard as I tried, and tried, The only family member who was not camera shy was Sean.

 image (2)

And he was just kind of being a goober. We’re all kind of goobers when we get together. My sister Nadir and I are grown women, and for some reason I find that when we get together for things like this we just seem to get all giggly, and act like children. Something that only a sisterly friendship could consist of.

After the doctors had a chance to speak. We were sent off into breakouts. We attended an informal Lupus Caregivers session where we were able to voice the difficulties we were feeling. I had no idea it would be so relieving to hear that there are other people out there who feel just the same way. And their loved one with lupus is going through all the heartache, pressure, doctor’s appointments, and struggles that my sister Nem is going through. I walked out of that room and when I saw her waiting for us I gave her a hug. Because I’ve been frustrated too. I’ve wanted to do more. And after feeling so much relief from voicing a few thoughts I knew that it was time to just give her a hug, and realize that she’s still my same sister.

And then there was Rita’s…

image (3)

That Saturday evening it was hot. When you’re in the car in the sweltering heat, and your husband turns to you and says “Rita’s?” You do not protest. First cherry italian ice of the summer. 2014, I see a good future in you.

Lupus Walk

By Natalie

imageWe did it. We walked for the second time as a family in D.C. to raise Lupus Awareness. The morning of the walk we drove to the metro station which I will have to excitedly admit is one of my favorite things on earth. I know. Kind of lame right? I need to get out more. It’s the only type of railway vehichle I’ve ever been on, and I’m facsinated by it. Just you wait until you get me on a real train… I won’t be able to contain my excitement.

photo 4

Once our family had all arrived and corralled together we began our mile and a half walk toward the Capitol. That’s it. Such a simple act to show support, and turn some heads on the busy street. The Grand Marshall of our event this year just so happened to be Nick Cannon. Kind of random? Not at all. Cannon was diagnosed with Lupus in 2012, and he’s made it his mission to raise awareness, as he too is still learning more about the disease. He cut the ribbon with oversized purple scissors, and we were off. Sent as a sea of purple consuming the streets of D.C.

photo 5

Nothing makes me happier than doing something out of the ordinary with my Saturday. So you can imagine I’d been looking forward to this event for quite some time. Not only did I enjoy every bit of this day, but for the first time in a long time I was able to see my big sister smile. And it wasn’t just any old smile. If I could describe it in a word I would descibe it as a smile of relief. Relief to be surrounded by so many people who understood what she’s going through.

photo 2

That doesn’t mean that she magically felt a million times better, because she didn’t. I’d love to say that the walk was just what she needed. To get out, spend time with all of us, and be carefree. But it wasn’t. The reality of her disease is that no matter how hard she tries to ignore it, no matter how many people try to help, no matter how happy she is, her body is the one who eventually gets the last say, echoing in her mind “I’m done, I’m hurting.” Her joints ache with every movement. Her muscles cry out in fatigue, and weakness.

That afternoon the three of us girls went to a Nationals game with our husbands. Feeling perfectly content snapping photos, and giggling with Nadir, I thought surely Nem is feeling great. All I’ve seen her do is smile, but then I glanced over and noticed the slightest wince in her face as she was trying desperately to overcome her discomfort. I quickly remembered noticing the same face a few days before Christmas when the three of us girls went to see the Nutcracker ballet. She furrowed her brow next to me. She fidgeted in her seat. She was silent on the way home. And I remember thinking to myself “Why can’t you just be better? Why can’t I make you laugh? Why must an illness take over your physical body like it does? You are the big sister. You’re the one who’s supposed to tell me everything’s going to be ok.”

But she is such a fighter.

If I have 100 questions for her body she must have 10,000. Through hearing her descriptions of her symptoms I’m not so sure I could do it myself. I’m certain I would curl up in bed, and never leave my home. The fact that she is even able to get up most mornings is a wonder to me. I wanted the Lupus Walk to be the push she needed. I wanted it to help her. But all it could have ever done was make her happy inside, and feel the slightest bit of relief. Every day for her will be a new day with it’s own set of challenges, and flares.

I know you visited today dear reader with the expectation of sunshine and daisies. To be honest I thought that day would be perfect too. And while we had a good time together, there is no denying the fact that Lupus remains an ever existent disease. Thank you so much for reading. Thank you so much for sharing. Thank you for your support in helping me raise awareness. When did people start believing that they are of no use to world change, peace, or disease? You may not be the most intelligable, nor are you much of a speaker, but do you know that it all begins with you? Awareness begins with the smallest of us crying out to the world for a change. After all, I’m just a baby sister praying for a cure.

5 Reasons to Prove I’m a Grownup Kid

By Natalie

  1. I love everything Disney. I held onto my old disney VHS tapes for the longest time. B convinced me to get rid of all of them, and said that one day I could get the dvds. But come on, once your married and paying a mortgage it’s not so easy to reestablish your disney collection. You have to do things like buy new fridges, and get your chimney swept.
  2. I use tissues with lotion when I have a stuffy nose. Ok that’s normal. Most people do… but do most adults get boogie wipes for themselves? The last time I was sick I begged Brandon not to laugh at me for getting boogie wipes. For those who are not parents, Boogie Wipes are basically a baby wipe for kid noses. They’re soothing, and made with natural saline! Let’s be honest, even the tissues with lotion can chap the stuffiest nose. Now that you’re curious about them yourself here’s a link to relief.
  3. Every time I go to Chick-fil-a I get a 6 count nuggets kids meal, and trade my toy for an ice cream cone.
  4. I always beg Brandon to make me a chocolate milkshake at night. Just to give you an idea of how bad of a habit this is for me, there was one night recently that I even waltzed over to the bed and sat down sipping on my milkshake. I looked over at B. “Well?” I said. “What?” He said confused. “Aren’t you going to thank me for making my own milkshake tonight?” B laughed. “Now I need to thank you for making your own milkshake?!” And then I realized he was right, I was being a bit ridiculous. I know my sisters must be shaking their heads while they read this. As they were the ones who once succumbed to my requests. Except my middle sister Nadir. Nem, the oldest, always spoiled me because I was the baby. Whenever I call her she still greets me by saying “Hi baby.” And I kind of smile a bit, because I am the baby. When Nem and I went to Europe in 2006 I was not a fan of the food. If I ended up with something I didn’t like, and I thought hers was better she’d trade with me without hesitation. Nadir however, she was sure to keep the spoiling to a minimum. I’d stare at her with her bag of pretzels that she always seemed to be munching on. When she noticed I was interested she would look me right in the eyes, and straight faced she’d finish eating, and close the bag up greedily proving her point. She also had this spinning toy that she kept on a shelf, and I was never aloud to play with it. I would beg her to try the contraption, but she always refused. She never used it, or did anything with the toy. It was almost like she kept it around just to taunt me. I’m curious if she even remembers it. That all makes her sound pretty mean, but as you could assume if it weren’t for her my expectations of people would be way too high. I’d never do anything for myself, and I’d always expect to get whatever I want. Who knew siblings could teach you such valuable lessons?
  5. I begged my mom for a puppy when I was a kid. I begged my husband for a puppy when we got married. When we finally did get a puppy Brandon got up in the middle of the night to take him out every time. I maybe got up less than ten times during those 2-3 months. B still gets up early to let Bingley out, and feed him. I like to say that I take care of all the playing and cuddling time with Bingleybug. My mom knew what she was doing. She knew me, and she knew I would have a tough time caring for an animal, so she stuck me with beta fish, and kitty cats. And I will say, she did warn Brandon.

So maybe that all proves I’m a kid at heart. But the more I read it the more I feel I’ve just outed myself as extremely spoiled. Either way, there’s a bit of knowledge about me. Natalie Poe, forever the baby of the family. Forever an ice cream lover. Forever a kid.

1 2