Advocating, is one of the most difficult lessons I had to learn. Obviously we do anything and everything for our children. But when our journey started with the girls I thought constantly the doctors are in charge. Almost like I had my place and it wasn’t telling someone as high stature as a doctor, how to do their job. I was WRONG! That’s not how this system works. I learned very quickly when the doctors started asking me for my input that my thoughts, feelings and concerns were immensely important. I  then made it a point to be at rounds every morning, we would discuss plans of care and concerns. I made it a point to learn the jargon that pertained to those exclusively in the medical profession. No longer was I being talked down to and was a member of the team. Parents of chronically ill kids this is a TEAM effort! So don’t be afraid to ask questions. Even if they feel stupid. Don’t be afraid to put your foot down to doctors. And never be afraid to make a plan WITH doctors not against. Here are some key things I have learned about advocating for my child’s medical needs..

1. Always trust your gut! Ultimately you know your child best. I can’t tell you how many times I have raised concern about something I noted. Even after being dismissed I pushed for someone to see what I see. I have always been right about a change in my daughter’s condition. And made calls for doctors based on my gut.
2. Learn your ass off. It’s important to know as much as possible about your child’s condition. It’s important for two reasons- for you to understand in situations that may arise at home or in emergencies and honestly doctors tend to be more receptive to parents that can take the time to understand their child’s condition. For me that went as far as sitting down with our daughters’ cardiologist and for almost an hour we reviewed every single Echo she had. Also learning the jargon doctors use amongst each other is also helpful, it 100% creates a space of respect and understanding. 
3. Still RESPECT your doctors, almost no one (re-read that ALMOST– still crazies out there) spends 8-12 years studying, clinics and putting themselves in a financial hole to harm anyone or do things just to piss you off. Remember they went to school and gained far more experience than Google could ever help you find. They have seen the good, the bad, and learned from many others before them.
4. Always get at least one second opinion. Most doctors now don’t get upset or offended. Most times they agree and respect your job as a parent to get different opinions and fresh eyes on test results. The hospital we were at encouraged it and turned it into a positive experience. 
5. On the flip side always remember to keep a level head. While exploring for our second opinion I had a doctor tell me, “I’m happy to send these records over for you, just please don’t let anyone tell you they can fix her.” While it sounds harsh she was right. My daughter could never be fixed entirely, she was always going to have a congenital heart disorder. It kept me in perspective. I realized then we weren’t looking for a fix, we were looking at advancements in her future surgeries that unfortunately have not yet been developed. The second opinion hospital graciously wrote us a letter thanking us for our exploration of a second opinion and for an opportunity to review her case, but assured us the plan of care CHOP had is exactly the same as theirs.

Hope this is helpful to all parents out there struggling with finding common ground with their child’s doctors. Maybe even a new family getting prepared to welcome their new baby that will need special care into this wild world. Please if you’re struggling to advocate, find a support group with families alike. I belong to quite a few. While i dont frequently write or share, I certainly read them and find solace in knowing we are not alone as a family. Our job is never easy, it comes with daily struggles but just remember you all are doing great!