There were two enemies pulling me down yesterday. One is called the past, the other goes by the name future. The Dr asked us about all of Jessica’s past diagnosis and treatment. That's almost two decades of struggle. These are not mountains I have climbed...and battles I have won. I am still fighting, and still climb. I will most likely fight and climb my whole life. I do not want to look back, I would like to leave it all behind me. I want to shed the past like a heavy coat...I have no interest in dragging those memories around. At least the memories of a 1000 Dr’s appointments and the fear and grief and loss. And the future...it's scary! I have zero interest in figuring that out. I can not tell you what’s ahead, I only know God holds me. But the meetings with the Dr and judge is about Jessica’s future. We need to own the future legally. But it is not something I can deal with...I do not possess the grace. I only have grace for now. The only way to survive autism is to live in the now. So yesterday was plain awful (a quote from the movie Annie). But the sun shines today because today is all I see. I survive autism one day at a time. It is the only way to do this. Do not look back, and don’t look ahead, just keep your eyes fixed on now. Now is beautiful! Today I look directly into the eyes of Jessica. I do not see struggle…I see love.
Monday, October 26, 2009
My birthday is this week. I turn 48 years old. A Dr comes on my birthday to examine Jessica and declare her permanently disabled and 100% dependant. She turned 18 years old this year. Normally that would make her an adult, able to make her own choices. If we do not strip her of her rights and gain legal custody, she could be a ward of the state. I don't want that to happen. So Weds day we meet the Dr. Later next month we meet a judge. I wish with all my heart she was well, and able to make her own choices. I'm afraid I will be unable to celebrate on wedsday. It will be one of the saddest things I ever have to do. Some things you should not think about. Some tasks should just be done...just do it, and do not think about it! I have no choice, I must just do it. I will celebrate my birthday on Sunday instead. Jessica means gift from God. She will legally become mine until I die. Then she will be Nicole’s. Nicole already knows and accepts this. I'm not sad for me, I'm sad for Jessica. She will lose all her rights. This makes me very sad.
Thursday, October 01, 2009
Last night I sat for nearly 3 hours in a kindergarten chair. It was a very long Parent teacher meeting at Sarah's kindergarten. I learned a few important things, but most of what was covered I could have read in 2 minutes. As I looked around the room I saw a half dozen other parents. Many of them anxious about their babies riding the bus for the very first time. All I could think was how much my legs hurt, and that most of these people are young enough to be my biological children (most being about 24 years old, and I'm about to turn 48). I was so tired. I had spent the entire morning at the heart clinic with Nicole. She has a strange shaped valve in her heart. It doesn't cause her any trouble, but we have to keep monitoring it. She is just fine (Thank God). She has zero restrictions.
Juergen told me Jessica’s teacher called last night. Jess will be doing two different internships at workshops for disabled people. We thought she had 2 more years of school left. I guess we were wrong. This is Jessica’s last year of school. We have to figure out what is next. The choices are not as fun or interesting as the ones Nicole has. I do not know what to do. I'm just going to wait and pray. We will visit Jessica at the workshops and see how she does. Perhaps she will find a place she feels good in. I have no idea what she will be doing, more information will be given to us in the coming months. I can remember the first time I put Jessica on a school bus. It almost seems like yesterday. This morning she was sipping coffee with her breakfast. I have never really known what the future held. I'm just going to keep holding Gods hand, I know he will not get lost!