Life certainly has not stopped…it sped up at a supersonic speed. 5 years very easily have slipped through my fingers without nearly a single word written. Looking back on the past 5 years I am finally understanding why my writing was virtually nonexistent. Our journey with Fragile X did not end with the diagnosis. Not even close. This we already knew. What we were not expecting was for the journey to get confusing, messy and so stressful, so quickly. I definitely didn’t think I needed to go into detail about the ins and outs of our everyday lives. And that, it seemed was all that was happening…ins and outs. It was Groundhog Day. It’s a common theme with all parents. But I think particularly with special needs parents. We stick our nose to the grindstone and we work hard. We don’t come up for air often. We work hard for the absolute smallest successes. The beauty though, is that even the smallest success mean SO much more than you can ever imagine. Case in point: Jack is in 1st grade but is far behind his peers. His fine motor skills are tremendously weak. So weak in fact that he is not capable of tracing letters or lines, etc without hand over hand assistance. Last week, his amazing aide asked him to draw a circle….just on a whim. He drew the most gorgeous circle you have ever seen. He then did it again and again! She celebrated, I celebrated, his academics teacher celebrated, his sped teacher celebrated, his OT celebrated! This may seem like nothing for your average 7 year old, but this was a small miracle born from A LOT of hard work. Moments like these are beyond wonderful.
There are also unbearable moments like being told by a complete stranger that it seems impossible to “them”, that your child can be sufficiently supported in a typical general education classroom given all his needs. In these moments I have a second or two when I wish I could reach across the table and slap “someone” silly and tell them that they are beyond wrong and actually don’t know your child at all. I also have the default emotion of wanting to fall into an abyss and take my baby with me so no one will every hurt him or think poorly of him again. But we didn’t do either in this specific case. We stood up to that “someone” and with the help of his general ed teachers and his AMAZING aide, Jack has come a LONG way! We, as a family roll with the punches and without a road map, we try and make the best decisions that we possibly can for Jack, Nolan and Neva. The road has been a bit bumpy and we’ve had to veer left or make a hard right from time to time but it has not lead us astray. In fact, it has shown us some gorgeous scenery along the way.