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In The Defense of the Man-Made


different |ˈdif(ə)rənt|
adjective
1. not the same as another or each other; unlike in nature, form, or quality.


man-made |ˈˌmæn ˈˌmeɪd|
adjective
1. made or caused by human beings (as opposed to occurring or being made naturally)


When Leo was born, not only was he "different" then normal infants, everything was different. Because of his deformed head: huge and heavy with pounds of fluid, we had to figure out different ways to hold him, feed him, since even putting him down required two people. He would stop breathing you see, because his teeny neck and body could not budge his head so every angle had to engineered for optimal comfort. We shredded several orthopedic pillows, among other foamy items and props, to help achieve a semblance of normalcy. My mom and I cut up many a hat to try to find one that would fit on his head. In the end, the hat that worked the best was a pant leg and a shirt in a previous life. I found it hard to put into words, the despair I felt when I would see a normal sized baby hat!
I developed an anxiety about taking him out in public, and when I did take him out, it was only if he was bundled up and hidden by the canopy of the infant carseat. Everything required adjusting, fiddling, and sometimes complete creation by yours truly. Bath time? What a challenge that was. It took four towels plus a wedge of foam just to position him in the tub. And again, it took four hands to transition him to and fro in those early days.

Lion man a couple weeks old.

I can't describe to you, the feeling of being terribly proud, desperately in love, and yet horribly ashamed of your baby all at the same time. After a while, covering his head became automatic. From giant pant hats he slowly graduated to hats made out of nylons and adult ski hats. His head began to firm up as the fluid drained out, leaving his misshapen skull bones and plates prominent. Because it was unavoidable to keep him off the back of his head, his plates got pushed up and overlapped with each other. At a year old, little man had a very tall head, no forehead to speak off, and a huge bony ridge topping the whole look. Different? That is putting mildy.
Browsing through our pictures of those days, I realize now how most of his pictures are either close ups ending at his eyebrows, or are shots of him in hats and blanket turbans. It's crazy, but now I almost wish that we took a photo that showed his entire head when he was born. But we couldn't face it back then you see. It was too hard.


 But one can, with time, get used to anything. We loved him, and we loved all his funky bits, even though we kept those hidden from view whenever possible. He was so full of personality, so loving and animated, that most of the time, the only thing one noticed anyway, were his twinkly eyes and smiley lips. And those who didn't, well...they had no clue what they missed out on!


To make a long, and rather traumatic story short, at around a year old, Leo underwent a very rare, super duper, ginormous skull reconstructive surgery in which we almost lost him, but in which we also received an incredible gift. The surgery not only drastically changed his skull, it also lightened it by several pounds making it finally possible for Leo to start hitting those milestones. It gave him a new lease on life; a chance to be, dare I say, normal. When we agreed to do it, we had no idea it would be such a catalyst for development and growth. We call it now: Leo's second birth.


 And when the crazy swelling finally went away, four months later, we had this new fabulous little guy who was trying his hardest to sit and crawl.



 And then, eight or so months later, Leo had reconstructive surgery again. This time on his forehead.
And though this surgery didn't do much for his physical development, other then creating the protective eyebrow ridge that he never had, it did a lot towards pushing him even closer to the "normal" of our dreams.


And when the swelling from that surgery went away, five months later, Leo had corrective eye surgery.




And now that his eyes are fixed, what you see, is a little boy who was made not by nature, not by the genes from our bodies, but shaped and formed completely by talented and skilled hands, by love, and by the miracle of hope.
Man-Made? You better believe it!!





He still has some weird lumps and bumps in his skull, but when I get a comb to his hair, you can't even notice those. 



 And now, taking him out into public? Meh...! It's really no biggie. He super cute, don't you think?!






Comments

  1. You need more adjectives for Leo-handsome, gorgeous, miraculous, spectacular, amazing, beautiful, adorable etc, etc etc
    And it is always about the eyes. Leo's eyes always looked alive and always made me question the diagnosis. Had the diagnosis been correct, his lovely blue eyes would not have been so incredibly alert and lively.
    Happy Thanksgiving!!
    Sterling

    ReplyDelete
  2. Wow. I have no words. His story is so incredible and unbelievable-seriously unbelievable. That kid has got a purpose, that's for sure. He looks adorable in every one of those pictures. Keep up being the amazing mama that you are to him. :)
    Tina

    ReplyDelete
  3. Sterling is right about his eyes; they are riveting. He has always been adorable and a chunka-lunka-hunk of love. Still, thank you for sharing so elegantly the mix of feelings you have had since he was born. Your words must be a comfort to others.

    ReplyDelete
  4. He is the definition of cuteness. No doubt.
    And courageous.

    ReplyDelete

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