Retrieving mail from our curbside box, I hear her talking as she wheels the stroller toward me. I see the familiar face of the little boy’s grandmother, Ruth, who I see on their occasional walks down our block.
This woman represents thousands of grandparents who help their children with childcare; however, this situation is different. Her grandson Billy is three-and-a-half, does not walk, cannot talk and has a feeding tube to deliver his nutrition.
Both grandparents take shifts, one in the morning; the other comes in the afternoon to relieve their exhausted daughter while her husband is away at work. Ruth expresses her feelings about being grateful she can help with their grandson’s care and she states, “He is our only one.”
I wave to Billy as I ask his grandmother how he is doing. She openly talks about the challenges, his recent surgery to expand his skull bones so that his brain is not constricted. She said her daughter has had to replace his G-tube (Gastrostomy tube) while he lay on the kitchen table after he has pulled it out. I hear her concern when she says, “I think I would panic if that ever happens to me when I am alone with him!”
As I crouch down next to Billy’s stroller, he struggles to take his sunglasses off and points his thumb to his chin. “That is the sign for grandma,” Ruth says. “We are trying sign language so that he isn’t so frustrated when we don’t understand what he wants.”
Loving children and having worked in the Neonatal Intensive Care unit as a R.N., this scenario is not new to me, but I find myself overwhelmed with emotion when she walks back home. I think of how few people, even in our own neighborhood, realize what is going on behind closed doors…
Grief permeates situations like this:
* One has to grieve the loss of the child they assumed would be born perfectly healthy, without any disabilities.
* Grief comes if you have to make the difficult decision to leave a career because of the demands of your child’s care. Income lost because of that decision, along with the accumulated medical bills is overwhelming.
* With each unique diagnosis, grief comes from recognizing the long-term physical, cognitive or social losses that occur.
* Having a child with special needs requires 24/7 care, leaving little time for social outings or time with friends, another loss.
* Grief is felt when you see others living the life you had hoped to. Watching others playing with their healthy children outside, or grandparents hearing the stories of their friends who are doing things or going places with their grandchildren, only add to the sense of loss. Social isolation and depression are common among parents of special needs children.
* All of us who have known traumatic loss and unexpected grief know that you lose people who are close to you as well. Family and friends, often grieving themselves, don’t know how to offer help so they stay away. Instead of expressing their feelings or learning what they can do to help, they offer little support.
Stay tuned for next week’s article Intergenerational Grief – Billy, Part II to find resources and practical ways to help.