CPN | By Parents For Parents - Why We Do This & What We Love

By Parents For Parents - Why We Do This & What We Love

From the beginning, Courageous Parents Network has been BY Parents, FOR Parents caring for seriously ill children. Certainly, the BY PARENTS is all of the parents featured in the videos and podcasts, sharing on the Blog, contributing to Facebook conversations. YOU.

It is also the core staff and the parent and provider advisory board. This month, we’re pausing to hear from the core staff, almost all of whom are parents who have been there + one pediatric palliative care nurse. CPN asked them 4 questions:

  • Why do you this work?
  • What was most important to you when your child was living?
  • What was most challenging for you?
  • Which are your favorite 2 videos/posts/podcasts or pathways on CPN.

Here is what we have to share:

  Jennifer, mother of Noah, Izzy and Ben. Ben had Sanfilippo Syndrome and died shortly before his 18th birthday.

Why do you do this work?

I do this work because I loved a child who died from something I could not control and that experience deeply rooted in me a determination to make the journey better for other families facing a similar circumstance. The opportunity to interact with families allows me to feel close to Ben and gives me a healing hope in the combined wisdom of others.

What was most important to you when your child was living?

When Ben was alive,  I always tried to meet him just where he was but still challenge him. If that meant doing crazy things like pushing his chair through Victoria Secret just to get him to say his favorite and final word (“boobies”), or toward the end of his life simply to make him laugh, that is what I did.

What was most challenging for you?

Changes in Ben’s baseline were the most challenging aspect of caring for Ben. With each shift, I was cast back into a state of anticipatory grief that was difficult to dig out of. Of course, when I was doing all of this, I did not have the language to understand it  — Baseline and Anticipatory Grief were not terms I had heard before CPN. I believe that if I had been able to name my feelings and know how to talk about them with others, it might have been easier to dig out – no less sad, no less painful but somehow easier to get back on an even keel.

Your favorite 2 videos/posts/podcasts or pathways on CPN.

I love Dr. Rick Goldstein’s blog/video on baseline. His words capture how I felt when Ben was alive and in many ways they still inspire me in my new baseline of life without him. “In the deepest sense, I think it is the children who own their baselines. Their efforts with their baseline, whatever their age or condition, can come to represent the value and meaning of their lives. Their lives will embody not only what has happened to them but how they lived with it and through it. It is powerful to consider that no matter what the baseline is, it can provide a foundation for hope and aspiration.”

There are so many videos, stories really, that I love on CPN. Telling my story was so healing and sometimes when I need to, I return to those videos done less than a year after Ben died, look my raw grief in the eye and see how far I have come. This one about Ben always fills me up just when I need it.

Kerri, mother of Kai. Kai had a brain tumor and died shortly before his 2nd birthday.

Why do you do this work?

To help others feel less alone. The awareness you gain parenting a sick child doesn’t go away if they die.  I often tell people I do this work because I can’t unsee it.  I know that I would not be where I am today – standing, breathing, smiling, living a full life – if I hadn’t had the support and insight of other parents and thoughtful providers along the way. No two stories are alike but sometimes you just need to know there is another parent out there willing to stand beside you.

Hearing and giving voice to others’ stories during the most vulnerable and intimate parts of their lives is a true honor.

What was most important to you when your child was living?

To be sure my fears never lead to his suffering. When Kai was diagnosed, I immediately worried that cancer and cancer treatments would take over his life. I struggled with the thought that the treatment would hurt him in order to make him better.  I worried that my fears of a life without him would prevent me from doing what was best for him. Parents, of course, think they would do anything to keep their child alive. But for me there was a line in the sand.  The best way to care for and protect him was to be sure my choices were always focused on his comfort, which sometimes meant putting mine aside.

What was most challenging for you?

Maintaining relationships while Kai was sick. All I could do was be his mom. In some ways, we became isolated by choice.  The relationships I had as a new mom were replaced by new relationships that consisted of care teams and therapists and other cancer families.  Typical family functions and gatherings felt nearly impossible as I was learning to tend to Kai’s every growing need. It became difficult to transition from hospital life to home life which also took a toll on my marriage.  I was unable to take on the feelings of others, even as they tried to support and mourn with us. I now know that grief, and anticipatory grief, is largely a solo venture. There are still times I want to keep Kai all to myself.  Perhaps more now than ever.

Your favorite 2 videos/posts/podcasts or pathways on CPN.

I think our content on Anticipatory Grief is very beneficial for families, all along their child’s illness timeline.  The pathway on Anticipatory Grief can help a parent identify their own feelings as well as help them cope with the differences their partner, friends or family may be having around the illness.

I also really like the way, in this video, that Ben and Allison talk about ‘coming around’ to palliative care.  This is the reason I do this work, so more families have this experience and care.

  Blyth, mother of Taylor, Cameron and Eliza. Cameron died at age 2 from infantile Tay-Sachs.

Why do you do this work?

I do it because I experienced first-hand what a difference it made to do this hard and unimaginable work with other parents who were on the same path – my brother-and sister-in law, and what a difference it made to receive pediatric palliative care and grief counseling as well. I want to bring the voices of other parents who have been there to parents going through it, and I want to help parents understand the value of palliative care so they seek it out. In short, I am taking at stab at bringing parents today what helped me then, via technology.

What was most important to you when your child was living?

I think the most important thing was always feeling connected to Cameron and to my husband and older daughter, so that I didn’t feel like the disease was hijacking my family. I wanted to feel in control of the decisions we were making for her and that those decisions originated in what mattered most to us as a family. I had never really thought about quality over quantity until Cameron’s diagnosis, but it certainly became a focus. What did we want her limited time on life to feel like for her and for our family?

What was most challenging for you?

Honestly, and I’m not proud of this, I think the most challenging thing for me was deciding whether I should keep working or not. I knew there was nothing I could do about changing Cameron’s prognosis and I am a very practical person. So I surrendered to the fact that she would die at an early age, especially as there was no hope for a treatment on the research horizon. Given that she would have a short life, shouldn’t I as a mother want to spend every waking moment with her and what was wrong with me if I didn’t? But I didn’t. I knew it would hurt too much to be with her all day. And I hadn’t chosen to stay at home for my eldest daughter either. I knew I needed to feel productive and take refuge in work. So then my biggest challenge was my fear of regret about this decision. Our grief counselor gave me wise advice that put this to rest, mostly: If the decision you are making feels right in the moment, after a lot of deliberation and consideration, then you will not regret it when you reflect upon it later. And this has proven to be true.

Your favorite 2 videos/posts/podcasts on CPN.

I have done almost every interview and edited each of them, so this is basically impossible to answer. As a writer once said about her books, “They are all my darlings.” Here are two I am especially appreciating today:

“The best I could do as a parent is give her the best time I could in the time that we had.”

I love it for how it’s the voice of a Dad. It resonates especially with me as my daughter’s condition also had no treatment or cure, and I know what a difference it made to pivot from the initial FIGHT/FIX mode to ACCEPTANCE and focus on QUALITY OF LIFE. Parents feel such a burden to fix, find a cure, save. And sometimes that just isn’t possible. How to make peace with that while still feeling like you’ve been the best parents you could be, that is mind-bending, soul-searching, and child-loving work.

“There were moments when I thought I can’t do this. Learning self-care.”

I love this clip from our interview with mom Brenda for how she admits aloud a feeling that I experienced multiple times and imagine most parents have; and in so doing, pardons us all — because what could be more understandable than worrying that the difficult moments in care might break us.

  Janet Duncan, MSW

Why do you do this work?

I do the work because pediatric palliative care is my passion. As a nurse I wanted to make a difference for kids and families, helping them through the toughest times. First, I created a bereavement program for the oncology families whose child died. Then I was able to champion palliative care for those who are living, with better symptom management, with making each day be as good as possible, with even preparing for end of life if that was to be.

What was most important to you in your work?

Most important for me was making a connection- with the child, the parents, the grandparents. That connection then could lead to a relationship, a trust, an authenticity to be caring and honest, celebrating the joys and holding the space, supporting them during the tough times.

What was most challenging for you?

Most challenging was when I couldn’t feel that connection, due to cultural differences, spiritual differences, or fears that sometimes become barriers to honest communication and relationship.

Your favorite 2 videos/posts/podcasts or pathways on CPN.

First let me say this is impossible to answer! I have so many favorites for different reasons. I can just say here are two I really like but naming 2 favorites is not possible!

I love this video with a child-life specialist because I feel we often don’t give kids credit for what they understand or can hear and understand, particularly about death and dying.

I love this Mother’s Testimonial because I want to be instrumental in helping each family experience palliative care this way!