In 1969 Psychiatrist Elisabeth Kübler-Ross wrote a book called “On Death and Dying.” This book outlines a five stage model of grieving that Kübler-Ross believed most individuals experience when faced with their own terminal illness and impending death. This model has been applied to grief and loss situations, including going through the loss of someone significant in one’s life. Interestingly, at the end of her own life Kübler-Ross was plagued with a series of health concerns and told others she was in the acceptance stage of her own death two years before she actually died.
This model of grieving can also be applied to having a child with special needs. As Emily Perl Kingsley stated in Welcome to Holland, the anticipation of a child is met with having so many dreams and expectations. When you find out that the experience will not go as planned, there is a loss there – a loss of a dream. I have a beautiful daughter, Quinn, and I love her with all my heart. But I am also experiencing a loss of what I envisioned life would be with a daughter in my life. I guess you could say that everyone experiences that to some extent because one’s children rarely live 100% up to one’s expectations, but there is a loss there when you learn that your child will face more challenges in her life than you expected and of course wanted. Nobody wants their child to have such challenges to overcome.
Kübler-Ross’ model is as follows:
Denial – “This can’t be happening to me!” Oh I remember that one. When I was awakened from a nap at 18 weeks of pregnancy and heard those words “Trisomy 21” I was in shock. I thought there was no way this was happening to me. I proceeded to go on the internet and look up how inaccurate amniocentesis tests are. I can smile at this now, but what I basically found was how ACCURATE they are – but that didn’t daunt me from still searching and searching away on the internet. I think it is safe to say that I am no longer at this stage. There really is no denying it anymore.
Anger – “How can this happen to me?!” Anger became directed at some of the reactions I received from people. It is generally not nice to say to someone “So are you going to terminate?” when they proceed to tell you the news that their unborn child has Down syndrome. I also was ANGRY at a doctor filling in for my regular physician. He obviously did not read my file. When I reminded him that the baby had Down syndrome, he slumped down in a chair and said “You know they are r-word, right?” and he looked depressed and bothered. I thought, “Gee I am sorry I brought you down with this news!” In my experience, my anger tended to be directed at the insensitivity of some individuals. Some parents may direct it at professionals in the system if they feel their child’s needs are not being met. It can also relate to transference of feelings from one insensitive person that you had to interact with to someone who reminds you of that person given their position or personality.
Bargaining – “Maybe if I …” I think I am still here to some extent. Well to tell the truth, I think a parent can go back and forth between all of these over time depending on the situation and what you are facing at the time, but a higher percentage of time can be spent on the higher levels as you work through some things for yourself. Getting back to bargaining, this is where I am in my obsession and quest to get Quinn all the services I possibly can. If I do that, maybe she will be higher functioning. Sometimes I feel so desperate for this. This could also come in the way of experimental treatments that may be out there. They may have some benefit, but parents may reach to them because of this hope things may be improved in their child’s life because of them.
Depression – “I’m so sad, why bother?” This also comes and goes for me. I don’t allow it to last long (quite frankly I am busy and distraction on other things I have to do helps me in this way). But the depression comes when I think about the future. I just get sad not knowing what things will be like. Sure I don’t know what things will be like for the boys either, but it is just more complicated with Quinn. Will she have someone looking out for her if we die before her? Will she find love? Will she be assaulted and victimized if we aren’t around – that is a huge fear for me – I just want her to be safe. Now that I am thinking about all of this, I guess I am still in denial on some things. To help guard against the depression, I have this thought that Quinn WILL marry either George or Cameron (two awesome little guys with Down syndrome). Now I know she probably won’t, but I can hope, right?
Acceptance – “Things will be ok.” I go back and forth into and out of this. Some days I feel that I am totally fine and other days are rough. I think this is common for parents with children with special needs. Like I said maybe in the future I will spend more time here and less time in the other areas. I can only hope. Acceptance also comes in finding the right balance between therapy and life. Getting your child services, but not letting services run your life.
If I had the power and choice, I can be honest with myself and know that I would have never have requested to go through this in my life. It is not something that I wished for. But now that I am experiencing this, I realize that I am learning so much throughout this process. Maybe this is a good kind of grief for me. Maybe it is something that will make me stronger, better, and more empathetic to others. Once again, Quinn is my wise one, and she knew just what her mommy needed in her life.
-Karyn
