The vicissitudes of our daily life with Emma require a certain degree of hope in order to stave off the depression lurking in the background. I need a plan of action, something I can refer to when I am tired, when my defenses are down, when I feel my grip on that tenuous thread of hope beginning to loosen.
At the moment I am reading about RPM – Soma Mukhopadhyay’s Rapid Prompting Method for autistic children, which gave her non-verbal son Tito a voice. I have watched the videos, have read her book and am now rereading the book while taking notes. I am on a waiting list to go with Emma to Texas to have a four-day session with Soma. In addition I have just started reading Dr. Howard Shane’s book – Visual Learning. I need to be alert while reading as the subject matter is dense and I have difficulty taking it all in.
Emma continues to wake the entire family at all hours of the night, resulting in all of us being exhausted, relying on caffeine to get us through the day with no end in sight. Poor Nic, who is not allowed to drink caffeine, has to muddle through as best he can. It is certainly affecting his ability to concentrate at school.
“We don’t have a plan,” I said to Richard this morning. “We need a plan of action.”
But the truth is, I need an infusion of hope. Like an IV – hook it up and let it drip into my veins. Hope is the thing, more than anything else motivating me to keep pushing ahead. Hope is the lens through which the world can seem grey and dull or bright and cheery. I need hope. So I think about the phone call Richard had yesterday regarding Emma’s last QEEG. We had the brain scan done the day before we left for Panama for her second round of stem cell treatments. Our conflicting schedules have made it impossible to meet to go over the results. Richard is meeting with one of the doctors this Friday. The doctor told us he thought there were some interesting things going on with that last scan.
So we wait and we hope.