I wrote the following in February 2005 when Jakob was three-and-a-half…
“We got the results of Jakob’s ADOS yesterday and they weren’t what I was expecting. I really believed he would test on the autism spectrum but he didn’t. It was autism. The label is autism. To put it in perspective, his score could’ve been 0-22 with 0 being no autistic characteristics. A score of 7-12 would have been autism spectrum disorder. Jakob scored a 16. Autism.
For the first few hours after we heard that word, I felt like I was having an out-of-body experience. Thoughts were racing through my head at 100 miles-an-hour…What do I do next? What happens when we get old? What happens to Jakob when we die? Will he ever talk? Should I have another baby so he won’t be alone? What if we have another baby and he/she is autistic too? Or has something else wrong? How do we afford more therapy? What haven’t we tried to do to help him? What does he understand…does he know how much we love him? This must be my fault…what did I do to cause this? What did his dad do? Was it his vaccinations? How do I tell my family? Will they understand…will Jakob ever understand??? How will other kids treat him? HOW DO I FIX THIS???”
Reading that takes me back to the place I was in that day and I remember those feelings so clearly. Partly because they return every now and then in new and different ways. The uncertainty, the wondering, the frustration, the fear. It’s all just a part of the party, I suppose.
The big difference now is I’ve learned how to not wallow in the pain and suffering that comes with all that fear. I’ve figured out that the fear is all in my head. It’s not real. It’s all imagined. When I look at Jakob and I’m experiencing any kind of stress or discomfort about his health and well-being or his future, I ask myself one simple question, “Other than what I’m thinking and believing right now, is he ok? Am I ok?”
And so far, every single time I’ve asked that question, the answer has been that we’re both ok. Better than ok, actually, he’s happy, and for the most part, he’s healthy. For the parts that aren’t so healthy, we see some great doctors, we’re managing his symptoms and healing his system. He continues to learn and progress and he’s developed a passion for trying new things. He has so many people who love him.
Then I remind myself that I believe the universe is benevolent and that the purest of heart will always be taken care of. That one belief eases any and all concerns that may arise in me. It’s faith. It’s a knowing. It’s a matter of letting go of all the worry and being in the moment and just loving it all. What a journey. What a kid. What a life. It’s all just how it’s supposed to be. There’s nothing for me to fix. It’s all perfect.