Met someone very interesting and wonderful last week. Allow me to introduce her to you.
“Don’t worry, be happy!”
Kinda silly song. This time it was sung by a fake rubber fish mounted on a wooden plaque. You’ve seen these novelties… Ya press the red button and the fake rubber fish moves its head and tail as if swimming, and the fish’s mouth opens and closes with the lyrics. Oh, and it plays songs, like the Bobby McFerrin song, “Don’t worry; be happy”. This giz is best appreciated when tipsy or two years old. We weren’t imbibing. But Nova is two years old, and she loved it.
So OK…who is Nova?
Well, let’s see if I’m up to this. Some people you can sum up with a few short sentences. And frankly, most two year olds fall into this category. Many two year olds will eventually grow and expand and their sentences will become longer and more enjoyable to read. But some people will never warrant much more than a short story, and you gotta keep the descriptions uncomplicated with these.
Not Nova. She is one in a million. After meeting Nova, I felt I wanted to tell you all something about her, and I’ve plenty of time and energy to do this, what with being on vacation and all. I have all those giga bytes on my puter to play with, and those dozens of words in my vocabulary to arrange and rearrange, and yet it will take me a bit to do this, and I will rewrite it a few times, and still I fear I shall only scratch the surface of who Nova is and what she does and how impressed I am with this tiny child. I know this already, and I have only spent maybe three hours with her.
The wedding was Sunday, and on Monday I had the headlight fixed and the oil changed early, and got the Jetta packed for the long journey home before noon, but we hung around because the offspring were gonna show up and we wanted to be there for this. We were at Rex’s house, Joie’s dad, and his grandkids wanted to spend more time with him and they showed up, since they were in town and home was far away for most of them. And Rex has some health issues and he is 96 and so you stop by when you are in town. Ya know.
Anyway, we found out that Nova’s parents could bring her by for a visit after she woke up from her nap, and we figured that was worth waiting just a little, since meeting her was on the short list. And we were so right.
I was washing the dishes after the pizza, onacountof I’m a nice guy and such (and I always need the points), when Jason, Elizabeth, and Nova arrived. So Nova was well into enjoying herself when I came into the room. She stood next to the little coffee table with all the magazines in front of the couch, and she was looking at fish. Pictures of fish. In the Orvis catalog.
Nova likes fish. She has been to the aquarium, and it’s full of fish and she saw every one of them. And she has books at home and she goes through them looking for fish. And she finds every one. So Nova found every fish in the Orvis catalog, and she was delighted. She was so delighted that she wanted to share, and so if somebody was sitting there watching her, and everybody was, she would pick someone, walk over and take that grownup’s finger, and haul them back over to see her fish. And she did this to several grownups. And when I walked into the room, she was doing this and I thought it was pretty cool.
Nova eventually had seen all the fish in the Orvis catalog, and so she found a rocking chair to climb upon, and she rocked herself for a while. And then great grandfather Rex brought in the rubber fish on a plaque that plays songs when you push the red button, and presented it to Nova. And WOW, was that OK with Nova. She had the red button figured out right away, and with each push she enjoyed a new song from her fish, and she danced with each, and the smile would melt steel.
Ya see, Nova has a hearing aide that puts the sound into the bones of her head so she hears the music just fine. The bones in her ear are just a bit mixed up, so the usual way to hear won’t work for her. But with the help of the hearing aid the dancing comes naturally along with the smile. And she sees anything she wants by just cocking her head a little to get things into focus. And without question, this works fine for her, too.
Once in a while Elizabeth or Jason need to suction out Nova’s tracheotomy tube, but she is accustomed to this. And she wears the back pack that holds her food that feeds through the plastic tube to that other tube into her stomach, and that’s just normal for her. No problem, ya know. She squeals with joy over life’s little discoveries and she is starting to eat tiny bits from a spoon finally, and some day that will be fine too.
Nova has about 200 words now, which ain’t bad for a two year old. She does this with ASL, which is American Sign Language, if you haven’t been paying attention. If you get the chance, you should learn some ASL, cause it comes in real handy with some folks who don’t talk with their mouths yet. Nova holds up the I Love You thing with her fingers, and it will melt your heart. Trust me.
Something about Nova that I just have to share. When she is pushing the red button and the fish is singing, and she wishes to show this wonder to you, she will walk over to you. And she WILL take your finger, and lead you over to experience this with her, and you will know you have been selected by someone very special for something very special, and if you don’t tear up just a little with how happy it makes you feel to be selected by Nova, you are beyond redemption. And yes, every single person in the room was so honored.
Nova doesn’t miss a thing, and she enjoys most things, and every eye in the room follows her everywhere and she enjoys the world, for she is just that wonderful.
And you are probably wondering about the hearing aid and the trach tube and the way Nova must be fed. Nova was born with a thing called Pfeiffer Syndrome. You can look it up, but what we have here is an incredibly uncommon, one in one hundred thousand babies-deal that happened to land on Nova. Craniosynostosis. Big word.
When things work as they should, a baby has these gaps between the bones in their skull, and this lets them grow into “normal” and then the bones knit together later and you have a “normal” head. With Pfeiffer Syndrome the bones fuse together prematurely and unless the surgeons move things around fairly often while the child grows, this messes up everything. So Nova has had a few surgeries, and she will have several more, and when she is finally grown she will have a nearly “normal” head. And if the early returns bear fruit, Nova will be one heck of a neat human when it is all done.
Nova has several little friends with whom she plays, and they have a ball together. And you can tell that she is going to have many more. Because of the roll of the dice, Nova doesn’t look like every other child. She looks like Nova, a happy bright gifted child, but that isn’t enough for a few fools. Apparently some moms have ‘rescued’ their little children from time spent with Nova, which proves that the human race is gonna go on like it always have, with prejudice and ignorance and irrational fears and dislikes propagated for eternity. And I feel so sorry for those little children, for they will not learn the joys of friendship with Nova, and they will advance through life incomplete and deprived because of their parents’ ignorance.
Some folks would tell you that Nova is handicapped. But I would suggest that if you ask Nova, the operative word here would be inconvenienced. Not handicapped. And this is Nova’s choice. She seems totally cool with things as they are, which of course would be a lesson for all of us.
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