Monday, March 25, 2013

Seize the Moment

For days now I have been trying to think of a way to say what I want and not have it sound cliché or, worse yet, stupid. It is ridiculous how many people find a phrase and say it so much that it starts to lose the intended meaning. That is exactly what I don't want and, while it is flattering to be quoted, I didn't write this so don't quote me.  There, now that that is out of the way, let's get to the point...

For most of my life, at least since I was 9, I have said that quality of life is more important to me than quantity of days. There is quote that might better explain it; "I'd rather have thirty minutes of wonderful than a lifetime of nothing special." ~ Steel Magnolias. It is the truth for me. At 9 years old I probably could not have expressed it in such a heartwarming manner but I certainly have lived my life in this manner for a very long time.

Unfortunately, the last year or so has kind of flipped that around for me. Certainly there have been moments where the quality far outweighed the quantity of time (see this collage of photos from June 2012) but more often than not I have found myself simply existing. That was never part of my plan but we don't always get to control how the moments play out in our lives.

 I learned very early on that I can control very little in my life and that is, a lot of times, a great thing. I would not have had some of the amazing experiences I have had if I insisted on being in control of the situation. Control is important in some situations (medical treatment, for example) but I am far more accustomed to not being in control...but I digress.

Existing seems like the easiest path when you're not feeling well. It is easier to sit back and relax than to continually push for a quality moment. That being said, I have come to the conclusion that I don't want to live that way. I have been given the opportunity, denied to so many, to live. I should not waste that opportunity by simply existing in it. Will every day be fun filled, memory making, never forget kind of day? No, probably not but that doesn't mean that I don't owe it to myself and life to live it.

I recently finished a book, Forever is Over by Calvin Wade, that basically summarized what I want out of life in the first chapter. Obviously I am well aware that not everyone can or will choose to live their life this way but, if you do, do it well and with passion. For yourself, your children, everyone you know because life is worth it.

Enjoy it, learn from it and more than anything, never take your health for granted. Don’t just seize the day. Seize the moment. Every single one.

Saturday, March 9, 2013

PS I Love You

(This post is a few days late or a few months early, depending on how you want to look at it. Either way it is important to me so please, read on...)

In the traditional sense of the word love, I may be the most naive 25 year old ever but that is okay with me. You see, I don't have an epic love story, pop music love song (containing far too many "baby, oh" lines), not even a love limerick to be shared with the world. Nope, nothing. But my love story is better than any Hollywood blockbuster or chart topping ballad; it is real and heartbreaking.

Logan with his B4SMA Blanket
It isn't a fairytale but it does begin long ago and far away in a land called Arizona. At the time, I was a junior in high school. I spent a lot of time on the internet because, other than precalc, I finished school work pretty quickly and was weeks ahead due to being homeschooled. On this particular day I came across a post on an SMA website pleading for help. The poster had a good friend who had a son who was critically ill and in the hospital. At 6 months old, this baby had already been resuscitated several times by his mother and father. Jennifer, the friend and poster to the SMA website, and I became fast friends. We would email frequently about ways that the hospital could help Logan do better. We also sent Logan a blanket from B4SMA. The blanket was covered in teddy bears with wings. I had chosen the fabric months earlier because it reminded me so much of my sister, Emma, who lost her battle with SMA in 1992. When Jennifer said that Logan's nickname was Logibear, I just knew that he had to have the teddy bear angel blanket.

After Logan was discharged from the hospital, Jennifer got me into contact with Shelle, Logan's mom. Over the next few months we communicated almost daily. I fell in love with Logan's spirit and his family. During the fall of 2005, Logan's dad, Chris, asked me which baseball team I liked better, Mets or Yankees. Being raised in NY one would think that I would have a preference but I really don't like baseball so I didn't have answer for him. I told Chris that I didn't like baseball but I liked the Steelers, knowing that Chris was a huge Pittsburgh Steelers fan. He was so excited by that response that he said someday Logan and I would be engaged and married.

Now, I know what you must be thinking. An approximately 17 year age difference is not okay. But it was the real thing. I don't mean that I was robbing the cradle. I loved Logan and he me. Just like a real boyfriend and girlfriend we sent each other gifts and "emailed" and Skyped often.

In February 2008, I was in the hospital recovering from the flu and trach surgery. I was discouraged and just generally unhappy, having been in the hospital for more than 50 days at that point. I received an email with several photos attached from Shelle. (I'll include the pictures below so you get the full effect)

Needless to say I smiled for the first time in days and quickly responded with my own picture (which I can't seem to find, regretfully). In any case, I said yes and throughout the SMA Community we were considered engaged. Logan sealed it with a promise of a ring as soon as he saved up enough allowance.

After over a year of being engaged to Logan, the unthinkable happened. For all intents and purposes it was a typical Monday for me. I slept in, not having class at all that day. Around 11, Brenda woke me up and I instantly knew by the look on her face that something was wrong.

"What?" I asked, not trusting my voice to say anything more. Brenda looked right into my eyes and said the worst two words in the world.
"He's gone."

I didn't even have to ask who, I just knew. Logan hadn't been sick and yet I knew, deep down inside my heart, that he was gone. It was not long after that my cellphone rang. It was Jana, one our SMA friends, calling to tell me what happened to Logan. As I listened I cried. He was only four years old and he was gone. After I hung up the phone, I threw myself into making a video of Logan's glorious life. Shelle and Chris used the video at the celebration of Logan's life.

I never got to meet Logan in person but everyday, he reminds me of what true love is really about. It doesn't matter that we were 17 years a part in age or thousands of miles a part in distance. Logan loved me and I him...I always will. Love isn't about numbers, it is about the signs I get on my worst days or my best or even while writing this post. Logan would have been 8 on the 5th of this month and I still miss him every day.

P.S. I love you, Logibear

Tuesday, March 5, 2013

The Ugly Truth

In the winter of 2010, I wrote that I was privileged to have SMA. Now that privilege doesn't seem to ring as true for me. Shocking, right? I am usually the girl you can count on for the upbeat and eternally positive. Don't worry she didn't go anywhere permanently she is just on brief hiatus. Today I am a grouch. I am angry. I am whatever the inverse of happy go lucky is and most of you don't know that side of me. But please don't be afraid because I think you will understand, once I get to the point. Bear with me...
At 25, I have had my fair share of bad days. I remember clearly the first day that I realized I was different. Oh the horror of being 6 years old and realizing that I was, to my udder amazement, not the stereotypical first grader. Staring at the brick wall of my elementary school, in a self imposed time out, I came to the realization that I was different. This epic awareness of my differences was terrifying at age 6. Where had I gone wrong? Why did I have to be different? As the reader, you feel for 6 year old me, don't you? Suddenly aware of the huge differences between myself and the other 6 year olds that made up my playground playmates. But as the reader you are also assuming that I cried, hot streams of anger, because I could not participate in some physical activity that segregated me because of my physical limitations. That is where you would be wrong. Those tears of inequality streamed down my tiny round face because I had suddenly realized that I was not and would never be African American. Yes, it seems ridiculous now that it had not occurred to me previously that the whiteness of my skin disqualified me as an African American but the 6 year old me was devastated . My differences in physical ability or lack thereof didn't impact my self esteem until much later in my life.
Now, what was the point of that story, right? My point is that, in general, the situations that are supposed to make me mad, don't. I am not angry that I have SMA. I am not grouchy that the things that I could do 5 years ago are a distant memory of abilities. I am privileged that I am alive. I am privileged to have been raised by individuals who didn't let me have pity parties often. Today sucked and everyone would agree with that assessment, SMA or not. Having said that, it doesn't mean that tomorrow won't be a great day. (it probably won't be because it is going snow and ice tonight but that is another story for another day) Seeing that today was not so great doesn't guarantee that tomorrow won't be at least a tiny bit better. Having SMA isn't the privilege; being alive is!