BY BARBARA SWOYER

What is it like to be the grandparent of a medically complex child living with serious, life-threatening illness? How does it feel to watch your adult child cope, day in and day out, to be sad, struggle, and be joyful in the face of difficulty? When you have a medically complex child, attention is appropriately centered on that child, and hopefully also on the well being of the parents and siblings.  Friends and providers care how the family is coping physically and emotionally, and about how they are impacted by the complicated living that makes up the framework of their daily life.

Grandparents, aunts, uncles, cousins are also part of the family and are also certainly affected as people who love the child and love the child’s nuclear family. But, they typically get less attention. Grandparents are especially affected as they watch their child give their life over to the demanding care of their sick grandchild.

What is it like for this extended family, especially the grandparents? What is like for them to watch and support, but from one or two steps removed? How do they feel? How do they cope?   

When given a chance through the Courageous Parents Network podcast series to get this glimpse into my parents’ experience, I jumped. They have been watching my husband, John, and me care for our son, Jake, for 21 years. My parents each recorded their feelings, as did my niece. It was a gift to us to hear their perspective on what it’s like to be on the outside looking in. Their podcasts have helped me understand the remarkable impact that Jake and the other children of Courageous Parents Network families have had on the loved ones who are part of their lives.

This past Thanksgiving, John and I shared our family’s CPN videos  with John’s parents, and here, Jake’s grandmother shares her emotional reaction to watching:

My name is Sally Swoyer, known to Jake as “Grandma Sally.”  Jake’s parents, John and Barb, are very involved with and supportive of CPN.   I recently viewed the videos of John and Barb featured in CPN’s video library and was incredibly moved.   I felt the need to share my thoughts as Jake’s Grandma and John’s mother.   It is very painful for me to write about this.  I felt overwhelmed by and very proud of my son’s openness and honesty.  Needless to say, we have always felt proud of both Barb and John, as they have navigated through a very difficult time since Jake’s birth 21 years ago.

When one person in a family is hurting, the whole family hurts.  I think the ripple effect goes without saying.   This has been a painful and sad experience for me.   I try not to dwell on my own feelings, however, but instead on John’s and Barb’s.   Recognizing that John doesn’t want us to feel bad, I’ve been cautious in expressing what I feel.  I’ve wanted him to be freed up to respond to Barb and her needs, to Jake, and to his own feelings about Jake.

Because we live a thousand miles away, we see John’s family only about three times a year.   I have to rely on John and Barb to give me a more complete picture of Jake.   I see my role as being supportive and remaining positive.   I do not question their decision making.  I like observing and listening, because it is the way I learn and come to an understanding.  

I feel comfortable with Jake.   I can sit with him, share hugs, and throw toy animals with him.    He knows he is loved and I know he feels comfortable with me.   That is good.   To spend time with Jake and to watch Barb and John take care of him every day, 24 hours a day, is helpful to me.    Through Barb and John’s example of their amazing love and care, I feel reassured that everything is okay.   As a grandparent, that is what I need to know.   

In the CPN podcast series, I chose to focus on the thoughts and feelings of extended family, curious to understand from a different point of view the impact that Jake’s life has had on them.  My father describes his special connection to Jake.  My mother speaks about the energy and commitment it takes to care for Jake, and how she has watched us evolve and take on that challenge.  My niece, Jake’s cousin, who has grown up alongside Jake, explains how he has inspired her to go into the field of special education.  And Jake’s caregiver discusses her unique and close relationship with Jake, and how they communicate and understand each other.  Hearing the honest and emotional words of these loved ones and understanding how Jake has touched them so permanently is a gift to us and a tribute to Jake. We are grateful for how it helps us understand the far reaching impact this experience has had on all of us who know and love our special boy.

The collection of stories in CPN’s podcast series further illustrates the profound effect these amazing children have had on others.  We encourage you to listen, and to experience the love and inspiration and beauty that comes from being a part of their lives.