A Universe expressed through a Window of Experience

Mr. Glass – My Ambitious Nephew

Elated AmariMy youngest nephew (1.5yrs old) has osteogenesis imperfecta also known as brittle bone disease. This is a genetic disorder that’s usually is the fruit of abnormalities of the genes that control the production of a protein called collagen. This is the main protein in the bone, and it’s essential for its strength. It has nothing to do with the calcium component of bone, which is what shows up on X-rays.

So last night, the two nephews are in the bath tub, and they’re playing as usual. We hear Amari crying….but this time…. extensively. I went inside to observe him, he was pointing at his leg while he was crying. I allowed my sister to take hold of the situation. We figured he’d calm down. After much wait and observation, his leg swells. My sister claimed his leg was broken. We waited about 30 min until our mother returns from work. We noticed his leg was unresponsive; Amari is unable to move it. Sis was very accurate. We go to the emergency room for a diagnosis and treatment. 2 hours later, he’s observed by the doctor. X-ray scans were conducted, blood withdrawn, and morphine administered. I was quite proud of the young one; for a broken leg, he didn’t spaz out uncontrollably. He pouted and cried, but he was calm. He’s a strong one.

After the tests were conducted, the doctor announced that Amari was going to require a cast and few other operations…but it’ll be administered in Atlanta. A splint was installed on his leg for stabilization, but there would be a wait period of 5 hours until the ambulance transports my sis and him up north. I give my sis the keys so that she can retreat home and pack the essentials.

Amari's Splinted Leg

….so it’s just me and my nephew.

Amari has a personality that’s seems to be exclusive of our influence; but he’s very hands-on. He’s very expressive, adventurous, and familiar with technology because of our exposure to it. His forte is one of vibrancy – if he’s not chilled out, he’s high energy. In this circumstance, he seemed so mad; not depressed, but mad. His leg has been tampered with all night. He tried sleeping. And he’s aware of his refined… limitations. He looked like a passionate pro-wrestler who’s career spiraled down the toilet. I’m laughing as I write this because the expression on his face was one of emerging indifference. He fashioned a cold stare. <<<this isn’t the Amari that I know that crawls into my room every day bugging me, wearing my shoes, laughing, pointing, and chanting with all his warmth and joviality.

“Amari…..Amari….aw, come on man…speak. Talk to me, chief!”

(silence)….he didn’t even look at me.

Mad Amari

“Hey! I didn’t do this to you….so don’t be mad at me”

I look away, and look back, he didn’t even budge. So…I pull out the phone. I take some pictures. Then, an idea….Netflix

He sees that red screen with the bold lettering…..his eyes light up. He knows what time it is.

“pon bab”, he uttered.

Amari Lights Up

Yup…Spongebob got the young chap to open up. He smiled. He pointed. Heck, he even started picking at his catheter; admiring it and pointing at the baby blue bandages and the white foam-like brace. I pop-locked; and I danced for him. He laughed. We practiced some new words. We talked. We entertained each other like we usually do. Teary-eyed and slightly drowsy (it’s like 2am), I was relieved to see him being himself. And I say that with a truck load of humility because, again, I see that this guy has a personality of his own; from how he squints his eyes and stares when he’s suspicious of something, to his demanding stances, even his sly grins. He’s peculiar at what he wants, and he’s assertive with his rejections. He’s a smart one, and tough to compliment it. Amari is tougher than his older brother in many ways; but they share a healthy love for each other – both with their own strengths and weaknesses. I hardly view Amari as a baby/child. He’s capable of making choices, and I love being able to facilitate. He becomes a step closer to self-reliance. The nurses were even surprised to discover than he doesn’t drink formula. He likes to eat a lot of the foods we eat. He likes drinking from water bottles and cups just like everyone else. He doesn’t like the feeling of being an outcast or discriminated against. As fragile as he is, he retains a boiling determination. He doesn’t like settling in his limitations. He sees us on these mobile devices and these computers – he wants to operate them too. He sees kids playing on the playground; he wants to get active too. He doesn’t like being helped when he doesn’t ask. Heh, he even knows how to turn on the XBOX 360, and how to eject the discs. He understands that when the XBOX is on, the television should be on; if it’s not, he will point at it saying “mmn”. I’ll confirm “TV?” and he nods. If I ignore him, he’ll pout his lips and keep pointing until I submit or he finds another interest. This is in lieu of his ambition in exercising with me in the mornings. He moves the 35 lb dumbbells by rolling them on the floor. If I’m doing flutter kicks, he sit and just move his legs until he’s tired. He gets frustrated when he can’t lift the weights as high as I, so he commands me to help him lift them. So because he’s so active, he doesn’t like to be deprived of an opportunity that promotes his character. And he knows when I’m depriving him; he cries out with frustration when it happens. There’s no baby talk coming from me, nor any gibberish. I talk to him how I’d like to be spoken to. When he follows my directions (completes a task) he extends his arm for a high-five, a fist pound, and a thumbs-up. He wants to be recognized for his accomplishments. Amari values his independence, and he views me (and the rest of the family) as an extension of him. He may want to touch the ceiling, so he’ll point directly up, and I’ll lift him for a few minutes and allow him to feel the texture of the ceiling. He may want to turn the blind-handle just to let the sunlight in the room. And when I’m zipping up my luggage, he volunteers to zip the bag close and lift it up from the horizontal position. There’s a lot to this young one. And being in that hospital room to witness and facilitate his recovery was invigorating. Supporting Amari has been like a glass of spring water to a dying flower. It reminded me of when I was hit by car (as a child). I hated that people worried. And I knew that I’d be treated differently. Mom would tell you then it didn’t stop me from hopping around on one foot to play tag. “Injuries? Pfft, don’t mind those, they’re temporary. I still have the will to live”.

Amari the Weight Lifter 2

And as I look at the pictures, and recall how our relationship missile-guided into this mishap, I realize that although all humans aren’t created equally, we often still treat others as if they are equals. The family is a bit upset with Jayden, but I’m not. I’ve watched those two at play. Amari may be an infant, but he’s not stupid. He’s very assertive about his likes and dislikes. He just wants to live. Jayden is the closest thing to a play-pal. They like to wrestle and chase each other. Jayden really supports his little brother, and I understand that Jayden forgets about his little brother’s condition when they’re playing. Jayden doesn’t observe his disabilities with so much care as we often do. And Amari doesn’t like being perceived as weak. “I can do it too…just help me with it and I’ll show you”. I hear that, silently, when he asks for assistance to do something. I observe, now that this has all happened, that Amari just wants to live like everyone else….even at the risk of harm. At the risk of losing one’s life, that how a fearless person lives – child-like. And over my years as an adult, I’ve been very cautious – fear-sponsored because I know the taste of a painful consequence. And after seeing this train of events, I don’t want be the overprotective uncle who babies and coddles his nephews excessively. I didn’t like it when I was their age, so I resonate. I’d rather be the extension of them so that they can be what they want to be. I’d find it difficult to cope with myself if I were to keep him from being the best they could be. It’s not so inspiring when people advise me to be careful, even if it’s out of love…..but I love it when people advise me to be happy.

Hyper Smile

One response

  1. Melissa

    Simply Beautiful John.

    March 29, 2013 at 1:44 am

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