"Rare"
February 28th, 2023 is Rare Disease Day. Chances are it's rare that you know the date or significance of this day. Why, because it's rare that you or your loved ones are affected by a rare disease. A small percentage of us out here in the world know about the rare day. However the rare population that DO know about the day are fully aware. They may not all order their steaks rare, but they do have a rarity among them! While it's RARE that I share today, given I haven't in nearly 5 years. Even more rare is the day I choose to bring my voice back happens to be National Rare Disease Day, coincidence I think not!
Where in the world has Archer journeyed too? Well I should say, he has became quite a jay bird, rightfully so as any nine year old does and will, a strong will at that. He is finding out what a personality one can have! Jay birds are bold and known for their raucous manner. Archer has learned his voice gets him what he wants, any sounds, louder the better. More often than not it's to express his excitement, words of "So Happy" or lots of uncontrolled wiggling, head shaking, hand flapping, or heal pounding. followed with laughter. All expressions of a jay bird, not always controlled! He continues to form synapses every day to strengthening his neural channels, engaging connections with movements that are expressive to him. To an onlooker it at times seems raucous and out of place. Rare one may think, to Archer it is his complex way of expressing his central nervous system. He has grown quite adept to mimicking sounds, he also may get louder than his surroundings, he may scream and squawk, but then he tells himself "Archer too loud, shhh, quieter!" Self-regulation at it's finest.
What is not rare is his smile! It continues to light up a room, but now he knows this gift and will flash a big cheese to please and get his way. He even adds "Pp" "Pp" "PLease!" His auditory language on point, just as Santa always sees you, Archer always hears you! I often receive multiple requests of "What is it?" Naturally I describe the loudest sound, which he hears, but now he wants to know the others. He persistently asks, "What is it?" Oh, you mean the hmm of the refrigerator Archer? "No" he says. Tick, Tick I say that's the clock almost time for... No! Then I start exploring NEW sounds outside, car driving by, big pick-up, loud motorcycle, OH it's the airplane up high high in the sky that you hear! Ok! Or it may be mommy going potty! Nothing gets by his unique intelligence. So what is rare? Rare is that I waited over eight years to see my boy take his first independent steps. I knew with his dedication to exploring the world, that he would be graced with this independent movement. Rare that he took those steps over a year ago and now is up to 10+ independent steps! On a good day, down the familiar hallway at school he can clock over 100 consistent steps. His visual impairment heavily impacts this skill but him and his team are putting great effort into the introduction of the "white cane." It is my hope next time you see him, he will be independently walking! And just so you know it wont be rare that he will be holding a "white cane" to help him safely navigate his surroundings. This progress may seem rare to some, however to Archer, my jay bird it is not rare, more over it is joy, it is triumph, it is putting one foot in front of the other and moving forward! 
