Thursday, September 08, 2011
20 years with God's gift
I remember playing mini golf with Juergen and some friends from Germany the night before Jessica was born. She was 2 weeks late and I was beginning to think it was never going to happen. At about 1am I sat up in bed to go use the toilet. Then like a water balloon popping, my water broke. About 16 hours later Jessica was born. She was blue when she was born. They carried her out of the room. Juergen followed. I was confused and scarred and tired. Sometimes I wonder if that has really changed much. I've been very tired, confused and scarred over the years. She had 4 heart problems. They discovered that the 2nd day in the hospital. She had her first heart op when she was only 3 months old. A 2nd op when she was 5 months old. She's had about 12 ear operations, and surgeries on her arm. But the hardest stuff has been because of autism. She began talking when she was only 6 months old. But she lost her voice at 18 months. And I guess you really can not understand what it means to lose all your hopes and dreams for your child until it happens. It's awful. I fought hard to find answers. For many years I would read for hours daily. We tried therapy and diets. We prayed. But Jessica remains mostly silent, and alone. And I use to feel so much guilt about making her birthdays special. You know I would do anything to try to make it all better. There were many years we would take her to Disneyland in Paris. I would spend 5 hours getting there, then the next 12 hours riding "it's a small world" about 20 or 30 times straight because that's what made her happy. She has no friends, only teachers and family. There is no one to give her a party. And she wouldn’t want a party anyway. Today I drove around Heidelberg collecting catalogs from different stores because she loves catalogs. And I took Philip, Thomas and Sarah to the store to buy Jessica gifts. We got her 2 new sweaters, some good smelling bath soap, some magazines, and her favorite candy. I also got her a picture of a leopard and a sculpture of a giraffe. Tonight we will give her a nice family party if we can get her to leave her room. I'm personally trying to learn how to live with autism. Not to act like it doesn't hurt me, but not to let it destroy me. Someday none of this will matter. The world is fragile. There is pain and sickness, but beauty and joy. I got both 20 years ago when Jessica was born. I wish she was not sick, but I'm grateful either way because she is really wonderful. I feel like I’m on an emotional roller coaster. And the only way to deal with this is by being grateful. One beautiful thing about my daughter is when we meet a stranger on the street Jessica can often sense how that person is doing. I’ve seen her go to an older person and just hug them. And that person who seemed to the rest of the world “ok” will begin to cry. She has real compassion. That’s just one of the reasons I love her. I’m so glad she is my daughter. She has made me a much better person.