Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved? Alyssa affirms that these questions are key in determining our children’s quality of life, and that their abilities have nothing to do with it.
We also talk about how medical decision-making on behalf of our children comes into play. She shares some great advice on weighing the side effects against a potential medication or surgery.
Alyssa is passionate about the concept of quality of life; her roles both as William’s mother and a RN in oncology have given her unique perspectives both medically and holistically.
In this conversation, Alyssa also boldly declares that our children’s disabilities and diagnoses are not negative; they’re positive.
Find more details,  full transcript, pictures, and a comments go to  https://therarelifepodcast.com/show-notes/ep-3-quality-life-special-topic-alyssa

TRANSCRIPT:
Alyssa  0:00  
"I've been questioned like, he doesn't have a quality of life. He doesn't do anything, he doesn't walk and, I just don't want him to be measured by his abilities. I don't want to be measured by my abilities. No one does."
Madeline Cheney  0:12  
Hello, you are listening to The Rare Life. I'm your host Madeline Cheney. And today we have a special topic episode with Alyssa Reidhead. Alyssa shared all about her journey with her son William in the previous episode. If you missed that, I highly recommend going back and taking a listen. Alyssa chose to talk about quality of life and what that means to her-- What good quality of life is and what it is not. She also talks about the deep connection that she has with her son and how she measures his quality of life by his love and happiness and not by his abilities. I learned so much from our conversation together about this. I think her point of view and perspective is very refreshing and very positive. And I'm just so excited for you to listen in on this. So without further ado, let's talk about quality of life.
Okay, Alyssa, for people who aren't familiar with the term quality of life, how would you describe that or define it?
Alyssa  1:15  
I'll start with like, me being a nurse. Quality of life basically kind of describes if you're given a diagnosis of something. It's how is your life going to look with that diagnosis? Are you going to be able to go about your normal daily life? Having a job or getting married, having kids, going to school? versus Are you going to be stuck in your home? Are you going to you know, those kind of things? What is your life going to look like? How is it going to change with this diagnosis? Quality of life... It's hard because everybody's definition of quality of life is so different. Um, some people may look at William, who's in a wheelchair and doesn't talk and doesn't eat. And, you know, these are the things he can't do. And they look at him and they, they will think they can say, he does not have a good quality of life, meaning he can't experience life. It's not-- his life doesn't have quality, quality meaning full of good things or, like happiness or not. Like, fulfillment like you know. And Ben and I have always felt like William has a great quality of life...