We 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.

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.

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.

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.

In the fall of 2012 I discovered that my oldest sister Nem was diagnosed with Lupus. I hadn’t heard much about the auto immune disease but I knew it would be something very difficult for her to live with. All my life my sister has been this high energy, tightly scheduled, organized woman. She has always eaten healthy, and taken care of her body. How on earth could some illness come in and fight against her body the way that Lupus does? It’s called the invisible illness, with good reason. She appears to be just as normal as anyone else, but inside she feels pain, weakness, and fatigue. She may not feel able to smile much anymore, or laugh as often, which breaks my heart. But I know that she is trying.

I will admit that I have been a selfish sister. Questioning why she no longer has the energy for small outings, or spontaneous get togethers. She has always been someone I looked up to and love dearly. How is it that this person I care for so much can be in so much pain? Through all of my questioning, and frustration with her I began to realize that she is strong enough for this. If anyone were to cope with Lupus it is her. She is selfless in her sacrifices. She has enough strong will to fight. She has enough discipline to keep the healthy lifestyle her body needs. When God places obstacles in our way it’s so difficult to understand why. There is no doubt in my mind that my sister was chosen to fight this illness because she is strong enough. She has always been an inspiration to me, and that will never cease.

This past year I have struggled with finding a way to support Nem. What words would be pressing enough to give her comfort? There is not much that I can say to make her feel any better. She has had to sacrifice her diet, lifestyle, and put her future dreams on hold. . The best thing I can do, and anyone can do is teach people about this illness. Spreading the word is just the beginning. Last year our family stood around Nem in the busy streets of D.C. at the annual Walk to End Lupus. We raised money for the foundation to help find a cure. I’m happy to say that we had a blast last year, and we will be walking again this April.

My sister, I know you struggle in your classroom, grasping any bit of energy you can to teach a pack of 4th graders. I know you struggle as a wife, which carries so much weight and responsibility in a home. I know you struggle as a sister, and daughter feeling as if you have not given us enough. But let me tell you today, you are most possibly the strongest woman I know to date. You have never been more inspiring, or beautiful to me. I nub you!I love you in our sister language. Yes we have a language that only the three of us understand. We are extra special.

To learn more about Lupus visit this webpage.

When I was younger I had the worst migraines. They would come on so suddenly. I’d be sensitive to light, food, and scents which left me feeling nauseous. Though my younger dramatic self was convinced I needed to seek medical attention my mom was always able to patch me back together. She’d lay me down with a few saltine crackers, and turn on a funny movie for me. I’d lay there for hours until I felt better. All the while she would come check on me. She’d refill my ginger ale. Check my temperature. She’d make me feel cared for and safe. There was a time as a teenager that I slid down a gravel driveway, and scraped both of my knees. I was at a friend’s house and managed to laugh it off as blood poured down my legs. When I got home and saw my mother I crumpled in her arms. Full of emotion and pain I burst into tears. I couldn’t hide my pain from her. She sat me down, with a glass of water and bandaged my wounds.

The next day my mom took me to the doctor where they cleaned and bandaged me up. The nurse showed my mother how to wrap my knees properly, and she watched very intently. I squirmed a bit during the process but didn’t make a peep. The next day when it was time for her to clean and re-bandage my knees she made me as comfortable as possible. She propped a pillow and towel under my knees, and began the cleaning process. She did so in a very cautious manner, but goodness did I scream. She looked at me confused. “You didn’t make a sound when the nurse did it.” She said. “But you are my mom.” I thought. I can be vulnerable around you, and you will still love me. I screamed, and cried, and begged her to stop, but she knew best. When it was done, she patted me on the leg and said “Jah” like she always does when she wants me to calm down and realize something is over. The simple translation for it is essentially an abrupt “done!” I’d always feel embarrassed after I’d make such a scene. Yet I’m not sure if I ever thanked her for all she’d done for me when I grew up.

How a single mother was able to raise three sane girls is beyond me. We gave her some struggles I’m sure. Trying to keep up with the oldest, but also needing her support. Keeping the middle and the youngest from pulling hair, yelling, and clawing each other to death. She must have had the most difficult time with us. But she always kept us safe. She always made us feel beautiful. Ultimately, she tried her very best to give us everything she could.

I still marvel at the healing power mothers have. I will never understand it until I am one myself. I watch my sister-in-law Ashley with my two nephews, and how they adore her. Any little bump or scrape she can make better with a kiss, and a squeeze. To all of the young mothers out there I encourage you to fill your little ones with love, and positive words. Your words hold so much weight in your child’s heart. What you think of them is what they will think of themselves. Teach them to stand up when they fall, and learn from their mistakes. Comfort them when they are at their worst. Be patient with them when they are disobedient. You are your child’s comforter, and caretaker. Take pride in your role as their mother. Not every woman is blessed with the chance.