In the beginning it was total shock, disbelief, and mostly devastation. There were many times he would cry his little heart out for no apparent reason. This feeling of helplessness was then compounded by not being able to s console or comfort him. Trying to hold him was completely out of the question, as most autistic children cannot tolerate to be held at all.
Then there were the times when seizures took over. The broken bones, teeth knocked out and all those stitches. These things can be mended. A broken heart never really heals, it just adds layers of scar tissue. Especially the time I followed Brandon around all day. Just inches away from him. For just one moment I turned my back and Brandon had a Grand-Mal seizure, falling flat.
After time, all the anger and devastation eases. You begin to see this person just how he is, innocent, tender, and in a great need to be accepted and loved. So, there were moments that the tears of sorrow turned to tears of joy. The one and only time he came up to me and put his arms around my waist and hugged me just for a fleeting moment. Another moment in time was when Brandon was little and wanted to go outside and would take your hand and lead you to the door. After several times taking him for a walk this way, I would tell him, "If you want to go 'bye-bye', you have to say, 'bye-bye'". One day Brandon took my hand and said, 'bye-bye'.
For these few, rare moments you learn to live for the day, the moment, to embrace the little accomplishments like meeting his eyes as he looks straight into your eyes and a hint of a smile appears on his angelic face. These moments in time are unfortunately rare. Sorrow fades and joy takes over. Hope, as in his mothers words, "Hopeism". There are many of these fleeting memories I hold dear to my heart and have learned to look forward for new joys of "Hopeism" on future visits.
Although I have come to terms with Brandon's condition, it's not as easy to accept this autism journey for my daughter. I spend my time hundreds of miles away from her in constant worry and grief for the life she lives. Yes, as a mother you want your child to be happy and not in pain. I look into her eyes and sometimes see the hurt and an enormous amount of fear and just plain exhaustion from being Brandon's spokesperson through this long journey of taking on school districts, physicians, and just plain wacky people with wacky opinions on autism. She truly is Brandon's champion of rights.
You cannot imagine the anguish for a daughter who I wish had more time to be a daughter. Who I wish would share more about her constant worry and fight for all the tomorrow's when she is no longer able to care for her son.
But she doesn't have more time, and she simply can't talk about some things.
Sometimes when I go to bed I cry for him, for her, for all of them, -- not tears of hopelessness, but tears of Hopeism.