Archer's Journey

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 o...

We have a 4 year old boy! He loves to be happy, don’t we all right? Archer’s vocabulary has begun to expand exponentially. He chooses to express words with great intonation. Awesome, cool, and Wow are a few of his favorite words, along with soccer ball, and "play rocks". His new favorite actions are to stand at the door and with slight demand say, “open door handle!” I knew, all in time we’d be blessed with his spoken language. A few words where there, but lingered for months. What did it? Being around his peers speaking at preschool. This provided him the experience needed to synthesize his own spoken language. Hello, language neurons, thank you for sparking and connecting.    Ha-PPY, is a feeling Archer understands, and will be quick to express if the situation presents itself. As a parent of a child with challenges, introductions can be tough and stir-up several emotions. I choose to explain how he loves music, being outdoors, and getting dirty. He can count...

Is it me or does the month of Love, also known as February stir up the exposure of your true emotions, those deeper ones that you don’t always like to come out? When we honor the accumulation of these feelings growing from our hearts, it gives us the courage to ride the waves of society. This year we ALL took a leap of faith, trusted the process, followed the tangent principle, living an extra day. Given once every four years, time for our modern day Gregorian calendar to “catch up.” Why the catch up? Well because the sequencing of 24-hour days, i.e. human’s attempts at regulating structure, falls slightly short of matching Earth's revolutions around the sun. Archer’s genetic sequencing happens to have a slight duplication, his evolution more deliberate, yet continues to be measured against a comparative time table with no “catch up” period granted, more over excessive assessments and focused goals. Instead of being pressured with meeting criteria, we have chosen instead...

Somehow in the juggle of Archer’s developmental milestones, the richness of experiencing life on his belly was cashed in for the support of big, bulky, stationary containment devices, with focus on getting him upright, either seated or standing. I must say, the engineering of “baby activity” items is stripping children of experiencing natural movement. These are especially ineffective for children facing other challenges. I constantly was constructing additional supports with pool noodles, towel rolls, neck pillows, doing anything to make it appear like he was advancing in development. We justified our efforts by believing it was his visual impairment restricting his desire to be positioned on his belly. Now, the only beneficial, natural thing we are continuing to do with straps, wraps, buckles, and snaps is wear him! Being overwhelmed with which needs take prominence is a daily endeavor. After receiving his CVI diagnosis in July 2014, we choose to devote our extra time educating ours...