“It’s just a moment in time, step aside and let it happen” – A short story about my handicaped stepson and my life

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“It’s just a moment in time, step aside and let it happen.”

(Quoted from the short lived TV. series firefly by Joss Whedon.)

It all started out for my stepson in a rush of action, confusion, miscommunication, and as fate would have it mistakes. I had not yet met my future wife, however the lengthy court depositions, the first hand accounts of family members, and the inevitable and necessary law suit itself bear out the events in glaring detail that is a story in it‘s own rite. After a terrible birth that could be described almost as a melee, and multiple failures on the doctors behalf and several cruel jokes of genetics, Kirin was born with cerebral palsy and mental retardation. For my stepson Kirin, a future that promised difficulties and damage, emotional, physical, and mental, by necessity, also bore with it strength of will and resolve to live.

In spite of all the doctors’ opinions and time limits put upon Kirin’s learning curve, and life itself, he has smashed on down the road past all their expectations. Kirin was, according to all the doctors, going to out grow his brain and die by the age of 4. So sitting here with him at the ripe old age of 5 with no end in sight demonstrates that ferocious desire to live that my stepson possesses. As does the time immediately following his birth. On top of having technically died for almost two hours in the birthing process, at delivery he managed to wrench one hard fought breath from his tiny, broken body. Then nothing. He was immediately rushed to incubation, and put on machines to breathe for him and then abruptly began to go into a series of violent seizures. But the fight was far from extinguished in Kirin. Enduring every new tragedy that god rained down one after another onto his 3 hour old, and fragile shoulders he stubbornly bore them all out and refused to give in. Two and a half days after being violently thrust into this cold world full of blinding lights and harsh noises. Born from blood and pain, and brought back from the abyss of death itself before ever even knowing life. Mother met son for the first time face to face. And from that moment on Athena, and maybe even Kirin in some abstract way, knew that it was a long, treacherous, muddy road. But it was after all a road. And they could walk this one so long as the sun kept shining down its warm and comforting rays fighting back the storms lurking just out of sight around every corner.

Just to look at Kirin, you would probably not immediately guess him disabled. However you probably would guess him far short of his actual age. He tends to carry his frame all bunched to the center making him look much smaller then he actually is. As a consequence of his cerebral palsy he does not posses the ability to walk and he is far too motivated to settle for crawling. So he hops about on all fours like a bunny rabbit. Occasionally, and usually after an especially large leap forward, he will forget the normally ingrained laws of cause and effect and fail to put his hands down resulting in a spectacular and entirely unintended episode of face-meet-floor. Now I know that I probably shouldn’t, and that some of you may even think it in bad taste, but it is entirely unavoidable that after such an episode, and of coarse after I make sure he is ok, I have to duck into the hallway for a minute and laugh. His grandmother, without fail, on every Friday when she watches him becomes, in her mind, his personal beautician. I should probably add that he is deathly afraid of hair clippers and so of coarse that is her weapon of choice. This results in his completely lop sided, utterly failed attempt at a bowl cut, and the crazy, uneven hair lines chasing each other around the base of his neck. He tends to sit with his feet splayed out to the sides at the knee, in what the therapists call the w position, with his toes and feet curled back and to the front forming almost question marks. He always carries a mischievous look on his broad, what I call “moon shaped”, face as if he is about to go uproot the small palm tree in the living room again but thinks that you think he doesn’t know any better. Then, after he has accomplished what ever mischief he set out to do, he will sit back in that unique position on his knees and stick his bottom lip out so far that it’s past the tip of his nose making any kind of reprimand nearly impossible.

We were always told that he would not be able to talk, and that makes the 5 words he knows all the more incredible. First off, strangely enough, he can completely understand anything you tell him. From simple commands or suggestions to complex ideas and directions. Sometimes, he even squeals in excitement when we spell things out, as adults do, when they are going to do something that is supposed to be a surprise. So to some extent I think he can even spell a few things. He has a series of squeals, grunts, and a few other noises and gestures that he uses to communicate that must be decoded. As with most things I’ve found the more time I spend doing this with him the more things he can get across to me. The first two things he learned were relatively typical of all children granted they came much later. He learned Mom and yes first with an emphatic shake of his head from side to side as the universal signal for no. He shakes his head no to so many things it’s a wonder the thing is still attached. The next word his mother and I taught him was a hard fought battle, but to our surprise, he eventually got it! That word was please which he usually utters at barley a whisper and it comes out closer to peeeaaaas. But a learned word it remains. The next one marked a point of pride and happiness for me as it took a very long time for it to happen. One day when I was at work and Athena was home with Kirin he started pointing to the door and saying with a questioning tone dad? Athena called me at work to excitedly let me know the knew word he had learned. I was happy but also realistic that it could just be a fluke or he could just be calling out for any number of things that sound like dad. But to my own excitement when I walked in the door he squealed with excitement and began proclaiming dad while pointing at me for at least a full hour and a half. And he’s called me dad ever since, well almost, sometimes he calls me Bob for some reason. I don’t consider that a known word however, considering none of us know anyone at all named Bob. It could be a reference to the next, and last word in his vocabulary I suppose. The last word is Sponge Bob from his favorite T.V. show. He will sit in front of the television if it is not on and point screaming Sponge Bob while glaring at you until you finally change the channel to get some peace of mind. I know his mother and myself are incredibly proud to be included in his exclusive vocabulary. I’m pretty sure Sponge Bob is to, although we haven’t heard anything yet.

As these years with Kirin begin to pile up around me, I cant help but notice the people around him he inspires everyday. His character and pure determination are a source of strength, hope, and happiness to everyone around him including myself. He embodies one of my favorite quotes, also the title of this essay, when it comes to anything tough or painful. “It’s just a moment in time, step aside and let it happen.” Wearing that mischievous grin, eyes shining all the while. I still think back from time to time, or re-read the mountains of depositions that hide that untold story within their legal ramblings and blame placing and wonder how something so tiny could be so incredibly strong. Kirin certainly is a force in my life, and a thorn in the side of fate itself.

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