Crying over the loss

Last night I was waiting up late while Juergen picked our daughter Nicole up from school. Her class had gone to a theater, and she was coming home at midnight (late for our 13year old). I was watching CNN just waiting. There was a news story about Andrew Wakefield, a British Dr who made a possible connection with the MMR vaccination and Autism. There were dozens of parents with Autistic children standing in support of Doctor Wakefield and his team. They wore t-shirts that read 1 in 100, symbolising the very large number of children affected by autism in the UK. All of a sudden I began to weep. I remembered the day I signed the vaccination release form, authorizing the 5 vaccinations in one day that pushed Jessica over the edge into this dark world called autism. It kills me that she was "normal", and then she was not. It hurts so bad that her sickness may have been preventable. You could never explain the deep loss I feel. She is almost 16 years old and needs full time care. She still wears diapers, and can not cross a street alone. I'm grateful for her smile, and her laugh. I am happy she is alive, but some times the weight of the loss hits me hard. All I can do is cry. God picks me up and starts to carry me once more. It is only in light of eternity any of this makes sense. We are all grass, and the flowers of the field. We wilt very fast. Why do I hold so dearly the flowers that are wilting?

DAN DR

We took Jessica to see a DAN (Defeat Autism Now) Dr yesterday. She is the only DAN Dr in all of Germany. I've read the DAN protocol, listened to DAN conference tapes etc. but this was our first trip. The DR lives in a small town about 3 1/2 hours North West of us. That's 7 hours driving for a 2 1/2 hour visit. We were all very tired by the time we made it home. I think it was worth the time! We will have a large number of biomedical tests run. Jessica may or may not need to start a special diet. We have done the Gluten Free Casein Free diet for 5 years and the Specific Carbohydrate Diet for one year. Right now she isn't on a diet. If she doesn't have a leaky gut,or a Gluten morphine, casein morphine problem we may not need to do a special diet. If we must re do a diet, it's the SCD I prefer. She will also be detoxed for heavy metal, but only after the diet issue is settled. Jessica sees the Dr again in September. Jessica is almost 16 years old. It's not realistic to believe any medical help is going to "cure" her from Autism. Still, we believe we should treat every medical issue she has. Over all it will help her feel better and preform at a higher leval. I still pray that God will heal Jessica. If God can raise the dead, He can heal autism!

The fall into the pit

There are pot holes and there are pits. To this point I had never really fallen into a pit. I had no idea how to handle what was happening, no idea at all. When you run over a pot hole, it shakes you up a little. Some times the pot hole is so large, it can even cause some car damage. That would require a day or so in the shop. But a pit is different. You fall into a dark hole, and when you get up to inspect for damage, you often fall off the ledge even further down. If fact one of the scariest parts about falling into a pit is being in the dark, and never knowing when and if you have really hit the bottom. When Jessica was 18 months old she had 5 immunization shots in one day. I remember asking the nurse if it was a problem that Jessica was sick, and taking antibiotics for an ear infection. I should have used my best instincts and said "no" not today. But they were the medical professionals. I was just a first time mom. What could go wrong? But with in 4 days things went terribly wrong. It has be wrong for 14 years now. Jessica lost her voice. I thought we would just spend some time in the shop, get the car repaired and be back on our way. Instead of getting on the road, I have had the challenge of learning to live my life inside this hole...and I know now I may never be allowed to recover from that fall.

What was she like?

She was beautiful. I know everyone thinks that about their child, but it's true. Strangers would stop me on the street, and in the super market. Her hair was blond and her eye brows bushy and dark. Her large eyes were an intense blue. They were deep, like the Mediterranean sea. She loved to flirt with people. We would sit in restaurants and Jessica would capture the attention of everyone around us. She was charming and captivating and funny!
Jessica met or exceeded all her early baby mile stones. Her first words were spoken when she was only 6 months old. We were in Holland on a vacation with Juergens parents. Jess was hungry, and I wasn't feeding her fast enough. She shouted in a loud and demanding voice, "Mama"! It was so loud and clear, Juergen and his parents could hear her from the next room. We were all amazed to hear her speak her first words at age 6 months. None of us knew what a miracle those words were. I can count on one hand the number of times I've heard her speak my name, since she lost her voice. It's really amazing what we all take for granted. Everything in life is a gift. Every word is a gift.

Jessica's Birth

I remember the night before Jessica was born. She was two weeks over due. We had visitors from Germany. They had hoped to see our new daughter. Instead we were out playing miniature golf. I had basically given up on ever having her. Then it happened. I sat up in bed around 1 am and just like a water balloon crashing to the pavement my water broke. From that time on, it was surreal. The drive to the hospital, the heavy contractions, the breathing. She was born the following afternoon in Kaiser Hospital in San Diego. There were a parade of Doctors and nurses. Every few hours the shift would change, and I would have a new Doctor and nurse, and another dozen medical students filing past my half nude body. I guess if I wasn't in so much pain I would have been embarrassed to have so many strangers in my room. That would have required losing my focus. My total focus was on her birth. Nothing else mattered. It never occurred to me she would be born on a wave of autism. In 1991 little was known about autism. Jessica was born with 4 different heart defects. This came as a huge surprise to us. When she finally had surgery at the age of 3 1/2 months, I was certain this was the greatest trail of my life. I've learned since then that that was merely a walk in the park. How could I have imagined myself to be so strong? I think looking back at that simple time I was living in a green house. God wanted to teach me to trust him in the desert. But just as he provided strength, guidance, and provision to his people Israel in the wilderness, God has also been with us. I have been driving Jessica Taxi for 16 years, but God is in the car with me. He often takes a hold of the wheel. When I feel like I can not move even one inch further, He adds some gas to the accelerator. We have come a million miles since those early days our beautiful daughter lost her sweet voice.