The Confession - Pietro Longhi
I confess tonight that I perhaps portrayed the person who came to visit us and assess Sophie's needs in a not-so-good light. I won't even go into the actual meeting because it was really out of this world, a scene worthy of Terry Gilliam's Brazil -- and I actually so desperately want the services that I don't want to do anything to offend the persons in power. My main aim in jotting down my thoughts is to illustrate the ironies of this strange life we lead -- those of us who have children with special needs.
Sitting at a table with a stack of forms to sign, all of which attest to the fact that your child has received a category of "institutional deeming" or speaking on the telephone to a stranger about checking a box that signifies the potential death of one's child, all while beating up the eggs and grating the cheese for the Friday night omelette is what I feel compelled to write about because it is not only what I observe, what jumps out at me as it is happening but what I must do. What I must do is write about it. Must write. Write.
I might add that there are many who battle disease in general or poverty or discrimination. My modus operandi is to speak or write the way I see it. Sometimes I sound bitter and sometimes filled with gratitude. Both of these are true. Having a tongue as sharp as a scythe has its benefits when used to break through to the other side. But it can also cause harm.
Above all, I want to impress upon anyone reading this that I am very aware of and grateful for the services that are offered to families with children like Sophie. Not a day goes by that I don't feel a gasp, an intake of breath, for those other mothers of Sophies who have none of the resources I have.