Openness, Honesty and Uncertainty
March 3, 2014 § 3 Comments
I wrote a post tonight, posted it and took it down. It was about an incident that happened today and the emotions that occurred because of it. My fear in posting it was that it may cause pity. There is nothing worse than pity. This is my life, sometimes it’s hard just like everyone else’s. I am choosing to share and I am open to opinions and criticism but the thought of people feeling bad for my daughter or my family sends me for a loop. I am not exactly sure why. I guess it beacUse ultimately we are fine. And the truth is we have a beautiful and blessed life.
It is hasn’t been hard at all to spill my guts on these pages. I have written now every night for a month. I absolutely love doing it. I have a beautiful friend to thank for the inspiration. But tonight, I hit my breaking point and I could hear my friends voice “if your feeling this deeply about it than it’s even more reason to share it” is pretty much what she would say.
So as a dedication to my friend and to let her know that it is her voice that helps me find courage ….. This one is for you.
Today Ari got off the bus crying. Aidan had walked down the driveway to greet her and he walked up with his arm around her. My heart sunk. There have been many days she has gotten off the bus crying, so my mind swirled with possible reasons as they made their way to the front door. “Did she hurt herself? Was someone mean to her on the bus? Did she have a bad day?” Finally they got to the front door and she fell into my arms sobbing – “I am in so much pain, my heart hurts.” For a parent with a child with Williams Syndrome your brain goes into overload. Immediately, I begin to determine “Is this real? Could she possibly really be having chest pain? Should I throw her in the car and drive to the E.R.?” We stood in the doorway for a moment and I thought rationally and knew logically she was fine and likely having a growing pain or something similar. Two minutes later she was walking around whistling as usual. But for that instant everything felt “uncertain.”
Last night the Williams Syndrome Community lost another life. A young man of 34 years. Heart wrenching!
Unfortunately this is not uncommon. It brings up a flood of emotions each time. This was likely at the root of my uncertainty today, even though I knew she was fine.
So what’s the point here? Well I want teachers to understand the uncertainty that can be for children with needs and their parents. I want them to understand how different the perspective can be. The priorities are just different! Not only did Ari feel physical pain but Aidan felt emotional pain as he experienced uncertainty as he walked her up the driveway. I also felt emotional pain as my heart broke for her to have to be afraid and for Aidan to have to feel those same horrid emotions that I was feeling. We have moments like this more than we should. In terms of what’s important it’s the moments like this that change everything. Today if the school called… I wouldn’t answer… I couldn’t begin to worry about anything else.
For tonight we will put on our pajamas early, indulge in Nanny’s homemade sauce and meatballs, and cuddle by the fire. We will certainly ditch the homework until tomorrow.