I have been in a funk all week. Truth be told, there are days this life gets old. This year it hits in Holy Week. Fitting, I suppose. We can only hope Easter week brings relief.
I wish I could explain the funk, but I can't. It's likely a combination of things. Maggie was off school last week and every vacation is just a little more difficult for me. Planning every minute of the day around Maggie's needs is physically, mentally and emotionally taxing. By the end of the week I am completely exhausted from the increased amount of lifting and maneuvering I have to do. In addition to that I have attended a couple of legal seminars on special needs trusts and meeting the needs of the special needs population - especially as they age. It made me very sad and very very tired.
Things will only get more difficult. Services are minimal and additional massive cuts in services are coming. One speaker I heard today warned that the services for the developmental disabled population could well go the way of mental health services in California. Mental health services in California used to be "okay" and today they are abysmal. In many counties they are non existent. According to this guy, the California model of services for the Developmentally Disabled is the best in the country and we want to preserve it. (note: I take serious issue with the model living up to the reality these days.) It was depressing to hear.
Of course there is always hope. One woman spoke of quality of life, a phrase that makes me shudder in the medical world, but one which is so important in the social services arena. She said for most of us the quality of our life is not measured by three meals and a bath and neither should that be sufficient for the disabled population. A quiet voice in the wind that must rise to a chorus.
I had to hurry home from that seminar because I had arranged for a Canadian doctor to come her and learn about how we handle everything. As if on cue I fielded a couple of phone calls regarding small Maggie issues while she was here. Despite the interruptions, this visit also gave me hope. She is specializing in the care of developmentally disabled adults. WOW! This is cutting edge stuff. I'm not sure such a thing even exists here. If this bright young woman is willing to devote her career to this, others will follow.
My family, and I'll bet the families of most of the people reading this, are somewhere in the middle of the pack. We are the middle class, some upper middle, some lower middle, but all middle. The extremes define the middle. One extreme is the rich and powerful, the other is the weak and vulnerable. Everybody is mad at the rich and powerful because they push the middle down. Why don't we all celebrate and protect the weak and vulnerable. They push the middle up. We will all look and feel better.
Somehow, someway, we all have to make people understand that the Maggie's of this world are not only a part of society and a part that needs to be protected and served, but a part that needs to be revered and honored. Then we have to convince the lawmakers of the same things, and they have to allocate the resources to make that happen. Or we have to find resources elsewhere.
We will all benefit.