Every day seems to be loaded with new things. Today we took a trip to the park and I got to go down a slide and ride on a swing for the first time ever. It got me thinking, I do a lot of firsts. In the last six months I’ve been to another country, driven across the US twice, and flow in four airplanes. There have been ponies, kitties, doggies (lots of them), and fish that I’ve met. A couple of weeks ago I moved from one side of the country to another. I’ve been to concerts, restaurants, the ocean, lakes, rivers, museums, pools, picnics, a wedding, parties, flea markets, the mountains, and a Greek festival.
Not to bad for a six-month-old. I wonder what firsts are coming in the next six months?
My parents tell me that I’m learning at a tremendous rate. Starting to stand, responding to some simple commands, recognizing situations and people, but all of that seems normal to me and it’s very frustrating.
Here I am not able to fully communicate, working to comprehend everything, still losing my fight with gravity and balance, and they think that I’m “coming along nicely”. Who in the name of Mordor do they think that they are kidding?!?! I want to run, I want to climb trees, I want to read books to myself, and I want to explore everything now.
Large organisms such as human beings have an average of about one mutation per ten gametes - that is, there is a 10% chance that any given sperm or egg cell produced will have an inherent change in the genetic instructions that determine the makeup of the next generation. These mutations occur at random and are almost uniformly non-harmful - it is rare that a precision machine is improved by random change in the instructions for making it. So as I look back and try to take stock of my last six-month journey to discover who I am in relation to the world around me, I’m struck by how much different I am from everyone else.
Yesterday I was diagnosed with SGS by my Grandma Joan - she is an expert on these things. The random 10% chance that I had in getting a mutation must have brought on my disease. My only hope at “normality” is to attempt to hide said disease from the world. It is either that or I buckle down and show the world that someone with SGS can be a productive member of society. I hope that over the next six months I can work to decrease how obvious my disease is and work to increase understanding of just how deadly living with Silly Goose Syndrome can be.
Sure I can’t speak in words that you people can understand, but my linguistic prowess is finally coming of age. This last week I have learned to conquer at least two octave ranges, while coming close to a third. With any luck, I’ll be able to break glass with my voice sometime over the next month.
The upside to this (and it’s all upside for me) is that my parents finally are beginning to understand what it is that I want. They were previously horrible at comprehending my simplest vocal commands, but have since flowered in their ability to grasp my needs. I will have them completely trained in no time. Hopefully, before I have to learn any words or sign language.
Take the video below as an example. I clearly am expressing some displeasure about something. To an intelligent linguistically-able human being, it should be quite clear. What I am saying is so simple that even a baby can understand. But here, for those of you who can somehow read, but lack the ability to get my fully functional vocal prowess, this is what I am saying:
"To whoever is working that camera, I have soiled myself and have not yet developed the manual dexterity to properly replace my diaper with the grace and dignity that I deserve. So please put down the camera and change me, at once. If you fail to do so, I will reiterate my complaint at an increased decibel until your small mind is able to grasp my dilemma. Thank you."
This last week I left my first home in Saginaw, MI. With it I left my friends, who have become my family. Tom, Kate, Elizabeth, Amy, and all of the people who came in and out of my life during the first 20 weeks are now thousand miles away. It may be that I don’t remember each and every face or smile, but I will always remember the love and kindness directed at me. At any age, every positive thing adds to the richness of life. And friends - good friends - provide a depth that is unobtainable alone. To this end, I say goodbye to certain individuals who have been there since my beginning and have had a heavy influence on me.
Tom, thank you for letting me fall asleep on you. You are extraordinarily comfy and I will miss your funny faces. Even when I was forced upon you by schedules and opportunity, you handled it gallantly. Kate, you were always there to entertain me and tried to get me to be happy as much as possible. If I ever have the honor of having you put me to bed again, Then come kiss me, sweet and twenty. Elizabeth and Amy, without you, my parents would have left me alone in the house in a cardboard box, with only Lucy to look after me. You kept me safe, comfortable, and contented. I will hold on to your blankets and smiles for my whole life. And will forever be in your debt.
Food envy can be a nasty thing. Fortunately, I’m only just now starting to get it. Take yesterday for example. My parents made pancakes for breakfast and ate them in front of me. There was real maple syrup, fresh squeezed orange juice, blueberries and strawberries. At lunchtime they held me there in front of the roasted pig at the neighborhood BBQ, picked out choice parts, sides, and then sat me on the table to watch them eat once again. Dinner was at the Greek Festival. They had gyros, stuffed grape leaves, spanikopita, saganaki, paximadia, and baklava. They ate all of this over the course of a couple hours in front of me! Is there any wonder why I drool so much?
We have talked it over and we’ve decided that I am to occasionally get to try some solid foods. They see no reason to put my food in a blender, as I don’t quite have the coordination to move solid food from the front of my mouth to the back for swallowing. They told me that that I should make the transition to solid foods gradually and that I’m to try to stay on breast milk for as long as possible. I was also “informed” that I had to meet four criteria before they would do more then hold a piece of watermelon in my mouth for me to gum on. So before I get any solid foods I have be able to hold my head in a steady, and upright position, and sit without support. The other two things, eating at regular intervals and being interested in what they are eating, I soooo have down.
