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.