Special Needs Parenting :: Love, Loss, and Regret
Our lives are enriched by the love of others: parents, children, friends and the others who impact our lives. As we grow older, we learn that to love deeply is to feel that eventual loss when we lose someone important to us. We learn this and we also learn how to grieve. It’s been said that “time heals all wounds.” Those of us who have loved and lost would argue that the pain may dull in time but we may never fully heal. We eventually learn to live with loss. While we may never understand why those we love die, we can work through it in our minds and come to some sort of eventual acceptance.
For our children with Special Needs, the wounds may stay open; the grief may stay fresh. When our daughter lost her paternal grandmother somewhat unexpectedly, the loss was a shock to her - one she hasn’t fully resolved many years later. The two of them weren’t particularly close which made it difficult to understand her insurmountable and long-lasting grief. Living in different states, they didn’t have the opportunity to see each other more than a few times a year. They didn’t converse by phone or by mail. So why did this hit our daughter so hard? The answer came later and was not what we were expecting.
My husband’s parents were the kindest, most genteel people I ever knew. They had hearts of gold and were very generous to our family. Still, our daughter’s challenges created a chasm of misunderstanding that proved insurmountable. They just didn’t understand Special Needs and didn’t seem open to learning about them or the nuances of communicating with her. That’s not to say they didn’t love her - they absolutely did. They just didn’t really understand her.
Our daughter went with her father to visit my mother-in-law over Thanksgiving 2015. I remained home to spend the holiday with my mother. During that visit, she continually texted me and I continually told her to spend time with her grandmother rather than texting me. She told me that she didn’t know what to talk about. At the end of the visit, she apparently told her grandmother that she would spend more time with her next time. Shortly after that visit, my mother-in-law fell, hitting her head. She ended up in a coma and passed away a few months later. “Next time” never came.
It dawned upon me a while later that our daughter’s grief was laced with guilt. She knew she should have spent more time talking with her grandmother and, in her mind, she was going to fix that problem “next time”. Unfortunately, she never got the chance and that has lived in her heart all this time.
We took her to the therapist she sees on occasion because she was having trouble coming to terms with this loss. What the therapist said was that our daughter held a burden for which she was not responsible. It should have been up to her grandmother, the adult, to find a bridge that would help them communicate better. It wasn’t our daughter’s responsibility, yet she felt solely responsible. Yes, she should have spent more time with her but should she really carry this guilt? We tell her that her grandmother loved her and that she’s watching over her but until she can work through it in her mind, this wound will continue to reopen periodically.
Helping our children deal with loss is perhaps more complicated than with their neurotypical peers. By figuring out the real cause of her grief, we could lessen the intensity of her guilt and remove some of that burden from her. Our children often think differently and often feel things more deeply so we have to help them work through it in alternate ways - ways that make sense to them. Once we can help put things in perspective, we can help them heal.