Eleven Years

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11 years is a long time to do anything. 11 years has a way of making something ordinary turn into a tradition. 11 years changes a person, a place, and all of the things that make certain things important. In 11 years you get comfortable with how it feels to do the same thing on a certain day with certain people. And then out of nowhere that thing that you have done for longer than just about anything you can remember is snatched away. It wasn't like you didn't see it coming but you kept your blinders on and refused to look behind because if you did you were certain that mere sight of the change would shatter

your already fragile heart. Now you know you can't go back, the past is gone and the future is much too far away for you to clearly make out what it will be. You can only see what is happening right now and even though your heart is aching deep down in your chest you force yourself to face forward and to look only at what is beside you. Beside you, you find only one thing; your box of memories of the last 11 years. In order for you to move forward, for your shattered heart to heal, you must, at least for now, pack away the box. It will be easier to move forward if you don't cling to the box of memories. The box is heavy and will cut into your tender flesh, making the change leave visible scars for the world to see. So you put the box away on a tall shelf and pushed to the back where for now it cannot hurt you. You turn away from the shelf and wipe away the tears you didn't even know you were crying. You close your eyes, allowing yourself only one moment, and take a deep breath. You open your eyes and allow a smile to grace your face as think of all of the wonderful things that are awaiting you in the still too blurry future. You may have a broken heart but you know that it will heal, given time. You know this because it has happened before and it will happen again, whether or not you're prepared matters little. Your face has dried from your earlier tears and your smile has become more real than it was before. You realize that the world around you is continuing and outside your window, the sun is shining. Yes, 11 years is a very long time and it is not easy to embrace the change. But moving on and changing is necessary so you go outside and feel the warmth on your skin and suddenly you realize it is all going to be okay.

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

Its Not in My Chart or my Declaration of Independence

The following document is something that I got from a great friend. He gave the bare bones and I filled it in with information that I think is important. The information below is intensely personal and real. It was written over the course of 2.5 years and contains a lot of information that is not public knowledge; until now. Comments are always appreciated but please be gentle with my life. Please feel free to take components of this and make it your own. Parents reading this, consider creating something smaller and similar for your child. It can be as simple as your child's likes and dislikes. Whatever you think physicians, nurses, respiratory therapists, other therapists, etc need to know that isn't in a medical chart.
 

Change

Change is something that many people do not embrace. I happen to be one of them. Whether it is something small, like bad weather canceling an event, or something big, like an unpredicted medical crisis, I don’t like change. For me, I think most of my problem with change results from the lack of control. I don’t have control over much, physically, because of my physical disability and when control of my plans is revoked, I hate it.

So when forced to deal with change, I begrudgingly meet the challenge head on and try to accept it. That doesn’t always work for me and the people in my life. My most recent experience involved my very least favorite kind of change: a change in my medical team. Most people are aware that I have a great deal of complex medical needs which requires my physicians to be willing to think outside the box for the majority of treatment options. Throughout my 24 years of life, the members of my team have changed more times than I care to recount. Most of these changes were as a result of the physician moving on but some have been removed from my team because of their unwillingness or inability to think of me as more than medical record number blah blah blah. Despite the medical establishment’s general unwillingness to be open to someone defying the statistics, I must continue to utilize their services. My medical team, as of January of 2012, was finally beginning to take the shape of a winning team. With physicians from most of the –ologies, our success rate wasn’t great but they were learning to listen to me and my family. Then my world came crashing down…one of the physicians, the one that I trusted the most and had known the longest, announced that he was moving to another state for the next 2 years. What? Why? What am I going to do? He assured me that I would be in good hands and he would still be available for consultation if I needed him. Having previously been involved with almost all of his colleagues, who left me unsure of their competency at best and afraid for my life at worst, I was heartbroken and frightened. Unless he reads this, he’ll never know that I was literally counting the days until his return. While he did his best to reassure me that all would be well, I still had reservations. That was until he told me who my new doctor would be in his absence. Relief washed over me as we discussed, at length, who the new specialist would be and his understanding of my complex needs. Great! It’ll be just like old doctor was still here, right? Wrong, very, very wrong…

While the new physician is a kind person and listened to us, his lack of knowledge was concerning. Knowledge is power, right? So why after years of education, was his best answer “I’ll have to get back to you”. Better than pretending he knew exactly what to do but still. I was open minded going into the appointment but came out discouraged and confused. My new physician may not be a part of my team for very long but he will know one thing when we’re finished… Medically speaking, I’m difficult. I don’t follow the natural progression associated with any of my diagnosis and for the most part, I am infamous for throwing curve balls. That being acknowledged is a major part of being a successful team member on my medical roster. I’m difficult, I know that. But don’t count me out just because I’m beyond your level of expertise.