Thursday, May 17, 2012

Le sigh...

Fredrick is in Macon preparing for another surgery. This is all good news, though I have a minimal amount of involvement. I am back in San Diego and trying to fight the urge to be consumed by my obsessive worry. I miss that kid like the dickens. My life is suddenly starkly different than the one I have become accustomed to.
In all this, I choose to believe that my blessings will continue. I was given a gift in the opportunity to care for Fredrick and each day away from him my gratitude grows. Some people go their entire lives without a single bit of love in their lives and I feel as though I am swimming in a vat of love covered love with love sprinkles.
So here I go, out in to the wide open wonderful world. Wish me luck in my adventures, I love you all. See you in July... ATL or bust.

Sunday, May 6, 2012

MB is a tattletale.

Despite our not having him as our nurse today he managed to save the day not once, twice, but three times. Mr. Bananas, arguably the best nurse in the world.
My morning was slightly staunched by startling pain as something wicked launched itself into my eye while I was out. I am not the type to over exaggerate an injury but whatever this foreign object residing in my optical vicinity was, that s#@t stung! I had hoped it would subside a bit by the time I walked back to the hospital but I was disappointed to find the pain increasing as I made my return. One of the techs noticed my obvious discomfort and we were on our way down to the nursing station when MB appeared out of nowhere (typical) and upon a look at me offered a lovely needle less syringe of sterile saline, with which I promptly flushed that hellfire out of my eye. That was a close one. MB 1 Minor Crises 0.
Later in the day, I asked MB to join us in my office, AKA the window seat in Fredrick's room. I intended to bounce some Halloween oriented ideas off him, as he is currently my only friend in Atlanta. Above other things, when his Murse shows an interest in something, Fredrick has an uncanny way of following. I was hoping to take advantage and engage Fredrick in a little brainstorming or costume planning. While MB and I were discussing my possible fanciful costume options, Fredrick remained resistant to our baiting and allowed not even a morsel of satisfaction in kinship to Halloween finery. He informed us that he doesn't dress up anymore. Unfortunately he then began to have some extreme pain in his legs. It is fairly normal because he suffers from constant neuropathic aches in his legs and groin. I usually try various unsuccessful techniques to lessen it, such as stretching and massaging. As I went over to move his legs I noticed a fair amount of blood on his sheets and like a girly mcgirlypants I freaked out and stammered "MB!" He immediately jumped into a gown (gowns and gloves are required in Fredrick's room due to his condition/s) and we found Fredrick's PICC line (IV) was leaking blood. Granted I am more cautious about Fredrick's various needs than necessary, it feels good to know I am not alone in it. It was BLOOD leaking out people, I'm not a total nutter...  Anywho, with his usual dedication to care, MB fixed it all long before our actual nurse got there. MB 2 Major Crises 0.
I was pulled out of the room to speak with one of Fredrick's occupational therapists about a distantly related behavioral issue and true to character MB stayed with Fredrick, even though I have a sneaking suspicion that he was on his break. When I made my way back to the room I passed MB in the hall and he said softly "He wants to be a creature of his own imagination." Those of you who know me well are aware of the joy this brought me. I don't play around when it comes to Halloween and MB had just made possible for me to involve Fredrick in something near and dear to my heart.
MB 3 Soul Crushing Anti Childlike Fredrickisms 0.
I mentioned to Fredrick a few moments later that I had heard that he might be interested in creating a creature costume of his own design and would he permit me a description so I might draw up quick sketch. His response was "Tattletale! MB is a tattletale to you! But yes." MB was kind enough to sharpen me a pencil for my efforts. Sweet success.

In the past I never have been too sold on the stories I have heard people tell about supposed "earth/guardian angels" who appear in their lives to shower them with goodness or assistance; but I am becoming to warm to the opinion that some people may have angels on their side, and we have MB. Tomato, potato as MB would say (much to Fredrick's hilarious chagrin). I could gush about these two wonderful men that have dropped into my life for hours, but it wouldn't do you all any good; because being a witness to their relationship reminds me of the potential of possibilities in this universe. It is heartwarming, it is unique, but mostly it is the very essence from which I draw strength. There is hope to be had and there is always the simple magnificence of compassion. They are an example of what can be when one treats strangers as they would their own family. I know it's what should be done but seldom does one witness it so thoroughly as I have in these short months.
So yes, our famed Murse has cared for me to degrees that I can never hope to repay him for, he has kept my spirits high with his humor and kindness, but he has done me the greatest service by showing Fredrick what is means to be cared for through thick and thin. I understand that few of us ever experience it genuinely, but all of us hope for it. I think it is called unconditional love, and let me tell you, in realtime, it is beautiful.

Wednesday, May 2, 2012

I just realized that the last post's title was in reference to Fredrick's ecstatic reaction to my return being followed by the statement," Something smells like cat litter, is it you?"

Cat litter

I just walked in the door from a three day hiatus and Fredrick opened his eyes and gasped. Although it was initially a bit concerning, there is something to be said about another human being so happy to see you that their breath catches. "You're back!" Fredrick, for some reason has long labored under the delusion that I might pack my belongings and hop the next plane out of here anytime he gets in some extra Z's He once woke up from a nap and started screaming my name at the top of his lungs. I was down the hall and came running, once I reached him he said, "Where were you?" I replied "In the game room!" exasperatedly, to which he answered "Oh I  thought my parents kidnapped you." As far as I know this fear is completely foundation-less as I doubt his parents have conspired to do any napping other than the desperately needed kind that involves snoring.
It can't be denied that I enjoyed my uninterrupted sleep while away; it is also true that my thoughts began to drift to meanderings about Fredrick every few moments I was away from him. People say that this is how it goes, you do something on a whim and the experience becomes a weaving of significant moments; but I guess it is also true that they are moments you would never imagine or predict. I had no intention of a slightly autistic paraplegic nineteen year becoming the focal point of my life. Nor had I any plans to meet a male nurse that I now can't begin to imagine living without. I never thought I would learn to live and quite literally work in a hospital. Yet my reality is encompassed by these factors.
I used to often say, " they say life is a bowl of cherries, but sometimes life is a bowl of shit." Well, I realized a few days ago as I was elbow deep in the latter, that I guess I just don't feel that way anymore. Life is short but certainly not dull, and my, can it get complicated. Complications aside, it's remarkable how often the it seems to me that the universe always unveils a plan of some sort. Just when you think you've got nothing left to give a miracle falls on your head. I guess it's safe to say that I consider Fredrick my miracle, and I can only begin to describe how it feels to know that a miracle finds you so essential to it's existence that your presence causes a brief shortness of breath.

Thursday, April 19, 2012

Epic Movie Night!

 Simply enough, earlier today Fredrick and I conspired to have a exciting movie night this evening, complete with ice cream, red vines and popcorn. We were planning to watch the special edition of The Wizard of OZ. A righteous seventeen minutes in to our journey over the rainbow, I'm through my pint of Ben & Jerry's and Fredrick is snoring through the Munchkin's welcome fiesta. We are wild and caaaahrrrazyyyy guys!  In all seriousness, he deserves some R&R after today's shenanigans.
Fredrick woke up this bright morning so resistant to any course of action that I was sure it was to be a day of strife and several tantrums. As has become his ever increasing habit, Fredrick stood to prove me wrong. After a slightly down trodden morning hygiene routine and a spirited discussion about his "skipping" his rehab today, Fredrick appealed to his most trusted ally, his nurse. Much to my relief Fredrick's attempts to sway him were all in vain. True to his unfailing character MB explained that the ball was far from in his court, and with his typical warm exuberance, admittedly a manner that sometimes causes even me to attempt reach for a star, he urged Fredrick to climb back up into the old wheelchair saddle and give it another go. Throughout the day he gave it several more go's as fate would have it.
I find myself regularly inspired by Fredrick's incredible feats but I can't recall having before felt the tight, effusive sensation that grew in my chest this morning as I watched him engage in a remarkable transformation I could have never anticipated. As we entered the music therapy room I noticed him slowly inching toward the piano without prompting.
Music therapy is without a doubt Fredrick's favorite part of rehab. Up until this point his interest has been limited almost exclusively to learning the lyrics of Disney songs and listening to the music therapist play her guitar. This small advance my seem unimportant, but his desire to engage in a more physical way peaked my interest.
I watched from a hidden vantage point as the music therapist joined him on the piano bench and the two of them reviewed notes and scales, transiently conferring their significance. Out of the music room there began to flow a soft melody I found unfamiliar but pleasing, it paused intermittently but carried on for the better part of a half an hour. I crept into the room to observe his expression and body language as I was sure this was yet another passion of his I had never witnessed. Sure enough, his pleasured concentration and unmitigated delight, forced an unyielding shock of emotion through me. Here was music at it's best. No one would call it refined or symphonic but it was indeed all but earth shattering for me in that small moment.
What had caused this dramatic change? The thing I find most intriguing about Fredrick is his capacity for creativity. I feel as though his monotone speaking voice and consistent lack of emotion when expressing himself allow him to be perceived by most as a simple, spark-less being. His preference for strict schedules and repetitive activities often cause others to assume his interests are bound by his habits.
I confess myself often among the ignorant, but I have never been so earnestly abashed as the instant he rolled himself toward me after the session, smiling, asking "Did you hear that? I wrote that." To which I had to respond, "Yes, Kiddo, but I felt it too."

Monday, April 16, 2012

It is becoming evident that I have a broad spectrum of information that you, the reader, may need to be privy to when it comes to Fredrick. I could attempt to retrace our steps thus far, but that is a challenge I would rather not undertake. Perhaps we should start at the title of the blog.
Fredrick is a young man of various qualms and few convictions. He does not like titles, for reasons he has yet to divulge, he shudders at the thought of being called "Young Master Fredrick" by my Aunt, as well as "Mr. Gleason" and the like. Yet I have found that nothing disturbs him more than the simple "Sir." Although, like most things he is not fond of, he will allow it if it is uttered by his awe inspiring Murse Mr. Bananas. I continue to find myself puzzled as to what it is about our fearless gloved leader that has caused Fredrick to deem him worthy of such an honor, but any who meet him will agree, he is the epitome of awesome.
For those of you who have experienced Fredrick, you may recall his love of fact and precision, and his unwavering dedication to bluntness. He was quite straightforward with me the day I dared call him "Sir". He halted his progress while looking me in eye (eye contact from Fredrick is rarity) and said "Don't call me Sir." As he does not often act so demandingly, I took some offense initially.
Though I made a considerable effort to quickly forget the occurrence I found it lingering at the edge of my thoughts. It was the first concrete implication that Fredrick might allow me some subtle tools to get to know him better. He had expressed several times that he didn't care for titles but I wondered if this held any weight in his plight.
Let me lay out the facts for you... Fredrick is nineteen, but I haven't seen anything on TV aside from Nickelodeon, Cartoon Network and various Disney movies for more than two months. His interest in animals and their behaviors exceeds that of the late Crocodile Hunter, and his literary tastes are devoted mostly to fantasy. He eats roughly the same thing everyday although he has a smorgasbord of options at his fingertips. He despises using napkins and tissues and he enjoys displaying the evidence on his face and clothing that he has had chocolate or a dairy confection. Lastly, his interest in a wholesome game of 'Sorry' never fails.
 Days later as I pressed play on the dvd player to commence the special edition of Beauty and Beast for the 17th time this week, I realized rather suddenly that my ongoing presumption that Fredrick was reluctant to grow up was quite wrong. His career aspirations and intelligence paint a starkly different picture, one of a rapidly maturing individual. It is arguable that his autism could explain his preference for extreme repetition, but I beg to differ. He once said to me, "I'm not a rebellious person, it's just that when I'm told what to do it feels as though I'm being caged." It seemed to me that Fredrick may only have been exercising the most power he has over his current situation. What can he control in his present state? His day is a collection of scheduled therapies and medications, because of his conditions he is even limited as to which position he may lay in during his time in bed.
In that moment I felt a sense of relief in the clarity that he was sure of something that I until then hadn't been. He was yet un"caged" in one place; In his room, where he sturdily, day in and day out, holds court over the TV and his sometimes soporific meal choices. With a renewed sense of compassion, I settled down for another chorus of "Be our guest" and began to smile at the understanding that my being able to recite the dialogue of Beauty and the Beast from start to finish, or finding myself feeling faint at the prospect of hearing the Power Ranger's theme song even once more; is a small price to pay for the assurance that Fredrick has the final say in our tiny hospital room contained universe. No matter what happens to him out there in the wide open world of his afflictions, in here he is still calling his own shots; and as it stands, I intend to do all I can to uphold his flourishing in-room empire.

Saturday, April 14, 2012

I realize I'm a little late in the game, but here are some classic Fredrickisms to get you started.

You should also know that Fredrick has a Male Nurse, a Murse if you will, who I consider our personal guardian angel and unfortunately my only friend in Atlanta. Fredrick loves him and holds him in very high esteem. As I have not yet asked him if he cares to be identified in my blogging, we will call him Mr. Bananas, or MB for short.


"Kayla and I might be distantly related, but in a short amount of time we've become as close as twins." 




"Tell MB I need more pain medication." 
Me-"Ok let me call him."
Fredrick-"No tell him."
Me-"I will, when I call him."
Fredrick-"No, tell him."
*I go find MB*
Me-"Fredrick needs more pain medication."
MB-"Why, didn't you just call me?"





"Don't you dare cut my hotdog, don't you dare!"




"I can't cath myself, I have to hold this heat pack on my ear...I'm sorry for the inconvenience Kayla."




 " The people in the cafeteria are unfortunately confused concerning the definition of hot dog, because those are bratwurst."


One day I went out for two hours.
 "Ummmm Kayla, I don't mean to be rude, but just where have you been all day?"





TV-"My mind is too powerful to be affected by hypnosis!"
Fredrick-"That's what they all say..."





"I wish you were my real cousin and MB was my real nurse."
Me-"MB is your real nurse."
"He feels like a step nurse."
Me-"What's a step nurse?"
"MB."



" I know I ask this all the time but do you think goats will eat meat?"
Me-"I think they are generally herbivores."
"They eat clothes and trash, they would probably like chili dogs."
Me- "Well played kiddo."