I tried to do an informal calculation today and figured, without exaggeration, that since Max was born, we have visited about 100 different doctors from Maine to St. Louis. They all have different letters after their names, different specialties and different insurance codes. Almost all of them have one thing in common. I dislike them immediately.
I have had doctors tell me that Max is fine and that I am a crazy mother for thinking there was something wrong ( huh?) I have had doctors tell me that he will never do anything and that I should start to consider what type of group home he will live in. I have had doctors tell me that he can’t hear, can’t see, can’t walk, and is likely consumed by depression and anxiety. I even had one doctor tell me that I should be ashamed of myself and that it is my fault Max has CP ( huh?) Others have told me that we do too much therapy, not enough therapy, the wrong kind of therapy. Some mention drugs, many want surgery, and one believes in stem cell research. Some charge us too much, too often, or don’t take our insurance.
Today, we saw a doctor who put all the others to shame. Each year it seems we focus on one area of development that needs work and this year it is vision and visual processing. By trial and error and the mom-network, we got to a doctor in Summit and we have spent about 7 hours in his office over the last two weeks. He tested Max in ways that have never been done, explained what the results will mean in the real world and spoke to us like we were important people. He treated Max kindly, in a mature and understanding way, laughed when Max was funny and helped him when he needed help. He stopped the testing when it got too hard and spent as much time with us as we needed. He figured out what the problems were and tested for them – nothing more and nothing less. He took Max’s CP into consideration, but didn’t use it as an excuse or give up because of it. He looked at Max as a person who may need some help, but one who is still whole just the way he is. So many before have left us feeling foolish for thinking that despite the CP, things can improve.
The doctors usually think we are so ridiculously optimistic that we must not know the truth. Hun and I have a running joke that after every major doctor visit, I call or text him and say, “Oh, my God, did you know that Max has CP?” Hun says, “No way ! When did he get that?”
This doctor will write a report that we can use for school purposes and made a few suggestions about how we can work with Max – but more importantly, he is now available to us as the newest member of the team of people raising Max. I know he will become a valuable resource to us in the future.
But, despite my relief, I can’t help but think how disappointing it is that it took over 100 tries to finally get it right.