A rant (accordingly)

Lately my tolerance for other people has been much lower than what it normally is. Maybe it's because I'm working in the rich people version of Walmart...or maybe it's because I've joined a few more online support groups and have realized how unbelievably clueless people are about their children's medical issues.
Even before Spencer was born, the second I found out about his foot I became engrossed in research. I could spout off facts about random and obscure genetic disorders by the hundreds. This knowledge has expanded as Spencer's list of anamolies has grown. It's gotten so bad that I often try to diagnose children in the waiting room at our appointments. Since we have a working diagnosis of sorts of Say Barber Biesecker Simpson-Young Ohdo syndrome, I have probably read everything on the internet about it and have made contact with three families who live in Europe.
I do this because I love my son. I want to be so informed about anything that could potentially help him in the future, that I'm constantly looking for things that can help him in anyway. I do it because it's my responsibility as a parent. I'm not depending on doctors to point me in the right direction. I will a medical opinion, but in the end if I feel something is right I'm going for it.
I've also learned, ask and yea shall receive....So far we've gotten a suction machine (that has saved us at least one ambulance ride) and countless other medical supplies that makes my job easier. I also asked our high risk clinic doc for an allergy consult. I was off my game that day and took her advice when she said to wait. I changed my mind and asked our peds to write us one, and he was shocked Spencer hadn't been tested (TRUST YOUR GUT AND DON'T BACK DOWN). I'm pretty sure our high risk doctor hates me because I come in every appointment with a giant list of things to ask about...but I don't care. My son is one of her hundreds of cases, so it's my job, not her job, to keep tabs on him. For example, I wouldn't know my son has a whole in his heart if I wouldn't have asked.
Which brings me to my next point...Quit whining about the small stuff. Yeah, sometimes life with a medically fragile child just sucks. Life would be grand if Spencer woke up in the morning spouting off his ABCs, running around the apartment, and eating everything in sight. But you know what, it's not going to happen. It might not ever happen and I'm ok with that. My life is amazing because of him. He is not a burden nor never will be one. While there is so much Spencer isn't doing, there is so much he is doing! Quit fretting the small shit and live in the moment. We live for today, but hope for tomorrow, and that's all you can do.
We mourn. Of course we mourn the child that we thought we would have. But we got something so much better! If you do it right, a child with special needs will take you from that simple, shallow, weak person you were, and make you empowered, complex, and strong. I thought I was tough shit before I had Spencer, and now I realize I was weak. I have survived a parent's worst nightmare and we have thrived. It hasn't been all hearts and flowers, but in the end we have made it and are moving forward stronger than ever.
Point number two...do your research. How can you be empowered when you don't know what the hell is going on with your kid? Google is awesome, use it. Ask questions...call doctors in the middle of the night. It's your kid and you know them better than anyone. It is your responsibility as their advocate, their voice, to fight for them. If one person says it can't be done, always ask someone else. And for Christsake...find a good pediatrician. I know if high risk clinic won't write a consult, Dr. Boling will do it for me. All I have to do is ask. If your peds doesn't say how great your kid is doing, and instead points out only the negatives, it's time to find a new peds.
I'm starting to run out of angst. I feel much better now.