A Presentation
2/25/2021
In November of 2020 my husband and I were presented with the opportunity to speak at a conference for Children’s Palliative Care Coalition of Michigan focusing on the need of caring for the caregivers of children with special health needs. We were asked for our perspective because of our unique position of both working in the health care industry as well as caring for a child with complex medical needs. I absolutely loathe public speaking, but there was never a question as to whether or not we would do it. I know how hard it can be to talk about personal struggles and I know there are a lot of parents who just can’t emotionally do it. I wanted to be that voice for all of us, regardless of my own fears and anxieties of public speaking.
Leading up to the event was nerve racking. I always think I’ll know what I want to say or discuss but once the spot light shines, I feel like a deer in headlights. There was so much I wanted to say, so much I had pre written and thought about to bring up. We knew we would have about 45 minutes to speak, but we didn’t really know what to focus on. How do you talk about what works and what doesn’t without starting at the beginning and explaining all you’ve gone through already? How do you narrow it down to the most important topics when they are all important? When we were all done with it I felt like I could have done so much better. It felt like we had jumped around all over the place with no flow, rhyme or reason. But I’m told we did great.
It’s a funny thing isn’t it? That we never feel like we do enough for our child even when we are just speaking about them. That’s something I struggle with daily. Are we doing enough for him? Should we be doing more? When do you know if it’s time to give up on something? And how do you find acceptance within your heart that letting go is okay, that it’s actually better? One of the challenging things about being a nurse and a mom is that I will wait on some things, and I’ll be paranoid about others. I’ll wait and be patient on big challenges, trying everything I know to do first before calling a physician. Even when something doesn’t seem right, if his vital signs are normal, I know we have time to wait. I have the patience and understanding that meds take time and we have to wait for things to work. And then there are other things that drive me crazy; medical things that I know are little now but can be the precursor to something more dire. It’s the things most people would bring their kid to the ER for that I’ll wait on, and the things most people wouldn’t notice that I want to rush on.
To view our presentation click here. (Don’t worry, we only speak for the first hour) And as always, thank you for taking the time to read my blog and for listening to my heart.