A Conversation with Crystal

Crystal and Sydney

About This Booklet

This family booklet is taken from an interview done with Blyth Lord and Mom Crystal. Blyth is the Executive Director of Courageous Parents Network – a non-profit organization that orients and empowers parents and others caring for children with serious illness, by providing resources and tools that reflect the experience and perspective of other families and clinicians.

Crystal is courageous mom to Sydney, age 13 at the time of this interview. Crystal's video conversation is featured in the family library on CourageousParentsNetwork.org. This booklet is another way for you to take in what Crystal shared about her and Sydney's journey, with links to related resources on CourageousParentsNetwork.org.

Meet Crystal and Sydney

Crystal is the mother of Sydney, who at the time of the interview is 13.

Sydney has severe cerebral palsy and is trached, on a ventilator, and fed via G-Tube.

Check out the family video page for all her videos

“People ask me – would I change it. And I said, no, I wouldn't. It's made me a better person, It’s made my sons better people. You know, them growing up with a sister with special needs, they're more caring towards others. They don't take anything for granted. We all learned how to love unconditionally, due to it.”

Sydney has totally changed the way I look at life: there’s gratitude, and also the flip side

relationship with God,

religion; and the power of Prayer

“I felt like I wasn't really getting spiritually fed in church. But that didn't mean that I didn't have a connection with God. To me, religion is like food. You have all different kinds of food from different cultures, right? Everybody has their own flavor of God. So that's how I see God. I feel you don't put him in a box and say, he's this way. He's so grand. I feel it's an insult to put him in a box and say he doesn't like this. For me, it's more about the relationship and not the religion.”

“It’s always been pretty clear to me what I want for Sydney because I feel like, I'm not going to let them do anything to her that I wouldn't have done to myself if I was in her situation. I want her to be as comfortable as possible, especially, with her situation. So, I haven't had any hard decisions to make.”

Title from video Advocating for my child: “If I don’t feel that provider is safe or respectful of my daughter, I go ahead and have them removed.”

“Enough is enough. This is my child, you're not going to come in here and talk to me like, you're better than I am because you have a degree for this. I'm her mother, I'm her father, I'm her doctor, I'm her nurse, I am her

“When you are tired of the technical terms and medical terms and instead of them thinking, okay, well, this person doesn’t know these terms, so I'm going to break this thing down for them. I was like, enough is enough. This is how we're going to do it. I tried it your way, now you all are going to do

Finding my voice as my child’s advocate: “I’m her mother, her father, her doctor, her nurse, I am her everything.”

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Expressing emotion in front of the medical team, as a Black parent

“I was targeted in the beginning, I got the tattoos, the shaved hair. And you know, they look at me as if, oh, she's ghetto. Oh, she's a thug. And I'm not. So I had to set the tone and let them know who you are. Yeah, I didn't go to school, I didn't do this but I'm nothing to be played with. I'm no dummy.”

Title from video Palliative Care:

“Palliative care has been helpful in many ways. Everything that we've needed, we've got. Nothing is forced, it’s like they listen to what I have to say. They find a way to meet me in the medium and say, well, here's another option. They give options. So that is the great thing about palliative care, there's no force behind it.”

“They come to you, they don't talk at you, they talk to you. And it’s a team. It's teamwork at its finest. I trust them.”

Introduction to Pediatric Palliative Care

“Nothing is forced. They listen to what I have to say.”

“It probably took a couple of months. When I'm not able to sleep at night, a ventilator is going on and off, all these bells and whistles and alarms. I had no choice but to accept it. I was like, okay, this is my life now. This is how it's going to be. It didn't happen overnight. It’s a process.”

Supporting Siblings

“When I really accepted it, was when my boys accepted it.”

Coming to a place of acceptance, over time. “OK, this is my life now.”

“From the moment that I bought Sydney home, those boys stepped in right away, like they wanted to know how to suction her. They wanted to know how to do her feeds. They wanted to know how to do everything.”

The big brothers stepped up. “I thank God for them.”

“We have a park that has a pond and I’ll go sit out there under the trees. Sometimes I just get in my car, turn the music up, let all the windows down and just ride. It's just whatever I feel like I need at the moment. Sometimes I want to get out and socialize and just talk to complete strangers. Or sometimes I just want to be alone.”

“I don't take the little things for granted. It's just the little things that count for me, tiny things. It could be me going out in the backyard and lighting the fire pit with some music on and just chilling. I just need a moment.”

Taking Care of Yourself

In the absence of enough nursing, being a nurse; and then finding ways to avoid burnout.

“That function in stress is poisonous. It will eat you up from the inside out and that energy transfers onto your kids, it transfers onto your spouse. It just transfers so we have to stay positive, and live in the moment, regardless of how bad you think that moment is.”

“We have to find the beauty in things and function more in it.”

“I would tell my old me, my earlier self, “Let go and Let God. Stay positive.”

About CPN

Our Purpose

To orient and empower parents and others caring for children with serious illness, by providing resources and tools that reflect the experience and perspective of other families and clinicians.

Our Vision

Parents and others caring for children with serious illness have confidence that they are doing the very best they can for the child and family.

What We Offer

CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers advocate for children living with serious illness and navigate the illness journey. At the center of CPN are parent and clinician voices that illuminate the lived family experience and focus on psycho-social and emotional needs, regardless of diagnosis and without bias.

CPN resources include videos, podcasts, newsletters, a blog, social media posts, educational guides and learning pathways written for families, and a clinician portal offering materials for use in self- and colleague education. Programs include virtual events, and virtual and in-person presentations to clinician audiences, industry and patient organizations. CPN also partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets.

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