Tuesday, September 21, 2010
I have people who also ask me what will happen to Jessica when we die or can not care for her any more. I can tell you I just don't know. I know that Nicole has said she will care for Jessica, but who knows if that will be realistic? She will have her own life, her own family. It isn't something I just put off thinking about, but I have no answer. I'm not there and I can not say how things should work out in 20 years. I'm glad we have 4 other children. I hope Jessica will never need to live in an institution. But if that must happen, God will be with her. I will love her and take care of her as long as I am able to. I have not given up hope of a cure. But if Jessica has to live in a care facility, it will not be an easy thing to plan. I'm not there, and I'm not going to stress out worrying about what I can not control. I will simply love my girl where she is at. She is at home. Thank God for now she is home!
Thursday, September 09, 2010
Jessica didn't sleep all day after a night with only 3 hours of sleep. Last night I got her to sleep at 11pm, but she woke up at 4am. She was in my room and I locked the door and tried to keep sleeping. I'm a wreak. She kept bringing me cloths. My room is a mess. I kept telling her to lay down and sleep. She was up and down, back and forth. For hours she walked from my bed to the door and back. I pulled the cover over my head...I could not change Jessica but I needed sleep. I have 4 other kids to take care of. Juergen is in India until tomorrow and school doesn't begin until Monday. When I finally got up at 7:30am Jess had pulled her diaper off and pee was on the floor. She had also gotten so upset, her nose bleed. I have to mop the floor, and do laundry because she bleed on my cloths. She took the key out of the door, and we were locked in the room. I could not find the key! Here I was, sleepy me with Jessica covered in blood and urine. What a sight. But I didn't panic. I called down to Nicole. She found an extra key and unlocked the door. I cleaned Jess up. I'm not allowing her to watch any TV until she sleeps. I also have a sun lamp, a full spectrum light I will put in her room. I took her out hours yesterday...but it's so rainy and dark. Her internal clock is obviously messed up. The light will help. The routine of school will also help. She was suppose to go shopping with her dear teacher tomorrow. I'm thinking that's not a good idea. Maybe if she thinks about school, she will grab her shoes and sit on the stairs all weekend. She wants to go back to school, but she can not manage the excitement. She just doesn't seem to understand tomorrow is not 5 mins from now. And the problem seems to be getting worse because she is not sleeping. I could use some prayer. This sort of thing has happened before, but Thank God not in awhile. I remember once I took Nicole to London for a long weekend (4 days). Juergen, Jessica and Philip all had a bad flu. We didn’t have Thomas and Sarah then. Jessica had to throw up. And when she throws up she doesn’t find a bucket…she just does it where ever she is. So poor Juergen had to follow Jess around the house cleaning up after her. We also just got Mickey our crazy dog. And he barks at strangers. Juergen’s good friend Ralf was there. Mickey barked and barked. Jess was throwing up, Juergen felt awful. Nicole and I had an awesome time. I guess if you're thinking Juergen owes me for this week…I owe him too. I’m not crazy or even too upset. I’m tired. I am pretty sure this will pass, but I could use some prayer. Jess just needs to get some sleep! I miss Juergen. I know I need him…but I also just like him allot. We are all so glad he will be home soon.
Wednesday, September 08, 2010
Jessica is 19 years old today. She was the most beautiful baby. She was smart and perfect. When she was 18 months old she lost her coordination, and her language. It was devastating. We spent years going from one Dr to another. No one could tells what had happened. How could a " normal" child lose her skills? It took 6 years to finally hear the words autism. And all our hopes, and dreams were destroyed. If it's true that God holds our tears in a cup of remembrance, he holds an ocean of tears for me. The loss was awful. Sometimes it still is. Last night Jess was so excited about her birthday, she could not sleep. She stayed awake until 3:30am, and woke again at 6am. I'm finding it hard to function on 3 hours of sleep. But I want to say this...
When Jess lost her voice, and we felt the loss of all "normal" hopes and dreams it was hard. I sat for years in a pile of broken dreams. The edges were sharp, and it cut deep to the heart. But after awhile you stop crying over what you had hoped would be. You start appreciating the pieces of what is there. Jessica's life is like a mosaic. She has soulful eyes, deep compassion, a large ability to understand character, humor, and sweetness. She is a broken person. Autism has broken her. It's robbed her of her voice. We only get to read glimpses of the complex thoughts she thinks. Often we are shut out all together. But she is lovely...all the pieces put together are lovely. In the book of 1 Corinthians 13 (talking about knowing God) it say “12Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.” What I see of my daughter is so beautiful, and I know I will be unable to speak one day because one day I will see her whole. This is my hope. Happy birthday my beautiful girl. I love you so much!