THAT mom.

When Milo had his first surgery he was 3 days old. He had been transferred by ambulance leaving me traumatically alone with a new diagnosis and no one to support me because of Covid. When I got to Lutheran General I still couldn’t walk and was being wheeled around.

3 days after Milo was born I sat alone in a general surgical lobby for hours (because Covid regulations wouldn’t allow Jon to be with me) not even understanding his diagnosis or the surgery he was having. And for the rest of my life I want to shout off a roof top the importance of advocating for Children’s health. We need to do better for kids, better for parents. I am by no means saying any of Milo’s treatment was bad, or that we aren’t incredibly grateful for our nurses, doctors, hospitals. However, understanding your rights and options as a medical mama is SO important.

I think most of us are use to blindly believing in doctors and following what they say. It is important to know that we can and should ask questions.

We can and should decide what doctor/surgeon is best for our child.

We can and should question we are in the right hospital for our child/diagnosis/treatment.

We can and should demand a family meeting to get all people involved in our child’s care on the same page.

You can attend rounds. Ask questions. If you don’t understand that’s ok. Ask for an explanation. Take notes. The amount of times my notes have filled the gaps is astonishing.

Can’t attend rounds because…LIFE? Ask to be called during rounds.

You can call for an update ANYTIME and don’t feel guilty.

Worried about something? A milestone? A symptom? Anything?! Speak up! You know your baby best. Not being taken seriously? Tell someone else!! They might have a medical degree but no piece of paper trumps the way you have studied and loved your child.

You can ask for a nurse/doctor/surgeon/therapist to be removed from your service. This is your child’s health, not personal.

You can speak to a charge nurse if something happens that you are unsure of or you feel is not right.

You can request your child’s medical records.

You can seek other opinions in the area.

You can seek opinions from ANYWHERE! Find and DEMAND the best for your child. Be scrappy and resourceful! Don’t pay the second opinion fee online. Mom source in Facebook groups to get direct contact info for specialists and name drop where you got the info from.

And if you don’t get a response in a timely manner stalk people!! It’s sometimes taken me 10 calls and 10 emails. There is NO shame in my game.

Were you told you need to get in to see a specialist and now you can’t get in for months? Call every day and ask if something has opened up. Have the doctor that referred get involved to move things along. Make it happen!

Never ever ever ever get complacent in your child’s care. Even when you come home. Engage with outpatient therapy. Engage with your pediatrician.

I know it’s exhausting. I know you don’t want to be THAT mom. The Karen everyone rolls their eyes at. But you can be kind and respectful and still be a bulldog for your kiddo.

Be the voice that they don’t have.

I will always be THAT mom that bugged to get Milo what he needed before I’m THAT mom that didn’t speak up and watched her child suffer.

And if you ever need a mama to have your back, get advice from, someone to validate your feelings, vent to….I’m your mom.

I’m

THAT mom.

Always.