Once you get a diagnosis, how do you get to the point where you’ve accepted what’s happening to you, your child, your family, your life?
You may have heard of the Kubler-Ross model of grief. At first it was applied to death and dying, but it has been spread out to many different kinds of grief. You probably read about it in your psychology college textbook, because it’s not new. I ran across it when Wendy was in the hospital and I realized that I was mourning our old life, the life before Wendy got sick, so I did some searching and rediscovered the Kubler-Ross model. I am by no means a psychologist, but this helped me to get some perspective on our situation with a new diagnosis and a child that was never going to be the same again. It’s a scary time, and your feelings and emotions run the whole gamut. Sometimes I still check in to see where I am on the continuum.
But now, I like to think of it more as a pattern of acceptance than stages of grief.
Denial: The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality. I remember thinking not that the doctors were wrong in everything they were telling me in the “Room of Doom” in the PICU, but I remember thinking that they must be exaggerating. They weren’t. I hoped that once we got home Wendy would improve. She didn’t. I remember the night I realized that she wasn’t going to get better. She just wasn’t.
Anger: This is often accompanied by guilt. “Why me? Why her? What did we do to deserve this?” I remember walking up and down the streets of Beacon Hill being jealous of families that were enjoying the summer. There was a woman who was yelling at her child by the “Make Way for Ducklings” statues because he had gotten his hands dirty from his ice cream cone and it was all I could do to tell her to get over it, enjoy this moment, because your kid could be in the hospital right now. Thankfully I kept my mouth shut.
Bargaining: This is a hard one. It involves the hope that we can somehow avoid this outcome. I could understand why people go to the ends of the earth to find a miracle cure for their child. People facing less serious trauma can bargain or seek compromise. Sometimes it works. My father said if Wendy survived that he would quit smoking. You get the idea. It’s trying to find what you can do to change the situation.
Depression: This stage can last a long, long time, and some people argue that in part of this stage, Anger comes back. Everything feels hopeless and you feel rudderless. All of your expectations and plans have to either be put on hold or moderated. You wonder how it can all be so hard, and why it’s so unfair, especially for your child. You might want to find a counselor to talk through your feelings. It’s really hard for a long time, and then at some point you realize it’s not quite as hard, and you slowly move toward the next stage.
Acceptance: “We’ve got this”. This is the idea of doing the best you can with what you’ve got. Gratitude sets in and you might find yourself being happy and being surprised at the happiness. You realize that life is moving on and you’re moving on with it.
I think, though, that for parents of chronically ill kids, that there can often be another stage:
Empowerment: This is the stage where both you and your child take the hand you’ve been dealt and play it. When you join advocacy groups, when you allow you child to re-join sports or after school activities or when you begin to travel again. When you do the things you love even with the obstacle, even when it’s not exactly the same. You may be a mentor to other parents of chronically ill kids, or you may write or speak to groups. Or you might not. Just doing the best you can is enough, and it’s inspiring to others.
Other members of your family will find acceptance at different rates. For us, one family member stayed longer in anger, one stayed longer in bargaining. It’s totally an individual journey, and it’s important to realize that we don’t all come to the same understanding at the same time. It takes a really long time to be ok with your life not being what you expected, and a new normal grows and takes hold, along with real, genuine happiness and gratitude.
The other thing that I want to say is that in this continuum, you might be knocked backward into other stages or have to start all over again with a new diagnosis. We’ve been dealing with some new symptoms for Wendy and I’ve lately been keenly aware that we might be starting this cycle all over again, but that’s OK, we’ve done it before and we will do it again. But that won’t mean it’s not difficult, or heart breaking, or painful or nerve-wracking, it just is.
Finally….when Kubler-Ross was interviewed years later, she said that she regretted putting the stages of grief into concrete categories, because while these are common stages, they aren’t definitive. Where is room for confusion? For frustration? For complications? For disillusionment? These things that you feel, they are normal to feel. Being aware about them, being in touch with your feelings and being able to both experience them and express them, will hopefully help you to heal. Be gentle with others who are on this path with you.
Empathy goes a long way in the healing process.
Picture: A winding road in Tuscany, leading to Montalcino.