I intentionally skipped the CHD awareness social media post prompt yesterday. I thought I didn’t have much to say on the subject, because Kiran hasn’t spent that much time in the hospital.
Today, after essentially running another Kiran-related meeting (communication team), I realized I have some pretty important advice to offer:
YOU are an important member of your child’s care team. Arguably THE most important. No one knows your child like you do; no one loves or cares about your child like you do; no one can advocate like you can. It’s so important to make your voice heard, even if you feel like you are being loud and pushy and controlling – I learned long ago to just be THAT mom.
I’m sure it annoys some. But I know that a lot of people appreciate it – the ones that truly *also* want what is best for your child. They are happy to see you advocate and make some noise.
Sometimes, parents hold more power than they do and can work toward real change.
And in any setting, ask questions. Clarify definitions. Don’t let people talk over you or talk in code. Make sure you have a solid understanding of the diagnoses or the decisions being made for your child.
It gets easier with practice – I promise. If I can be that mom, you can be that parent/caregiver/support person, too!