I have been reading a bit since the start of the year and have finished book #3 of 4 that I picked up from the bookstore. The last book was called “The Two-Family House”, a debut novel by Lynda Cohen Loigman. I won’t do a review here but wanted to talk about a passage that I found in the book on page 183. In this scene, an older aunt is talking to a eight year old girl. (from a poem by Emily Dickinson)
“… I found a special poem that helped me feel better. … I don’t remember all of it, but the first part goes like this.” Aunt Faye cleared her throat and closed her eyes. “I measure every Grief I meet, with analytic eyes — I wonder if it weighs like Mine — or has an easier size.”
“I don’t understand.” (eight year old)
“It is difficult to understand, isn’t it? Of course everyone has their own ideas, but I think it means that everyone has some sadness in life. Maybe someone they love is sick or died, or maybe someone they love did not love them back. Maybe they don’t have enough money for something they really need. For me it was that I couldn’t have a baby. But for another person the grief could be something different. Something they wish they did or something they wish they didn’t do.
We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. I have had some bad things happen, but then a lot of wonderful things happened to me too. An awful thing happened to you yesterday. But you mustn’t let it ruin the happiness that lies ahead for you, dear.”
This passage stuck with me as a reminder that as individuals, it can be hard to share what is in our head/heart. Grief is not just related to death, but also to loss. Death is hard for a lot of people to focus on because it is the final loss. Once someone is dead, there is no coming back, no replay, no next time. What we have done or said is how it is and we can’t change our relationship with that person. The impact that they made in our life is still there, but it is missing from our world now and we can’t get it back.
Grief also comes from considering the losses of life; the loss of hope, a dream, a change of plan. When one is ill, we consider all the things that we cannot do or how life has changed “from before”. Physically we are not able to do things, must change our eating habits (diabetes, heart conditions, etc), and our lifestyle must change. The same can be said of parenting. When my babies were born, it was the greatest joy. When I was told that my newborn daughter had a lifethreatening heart condition and she needed risky surgery, I was terrified. When they told me that not one, but BOTH of my twins had autism, I mourned. My grief focused on the loss of a dream. Now some parts of the parenting dream had to change. The stigma of them being “different” meant that there were/are likely some things that they will not achieve. Can they join a team and play sports? Can they become a star athlete? a president? a successful worker? I had to let some dreams die. I had to let the dream that I could go to parent groups and relax, and be an average soccer mom.
The main point of this passage was We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. As a person, we can be self-focused, or inner focused and lose perspective. The fact that something happened a certain way has affected me this way, or the fact that something didn’t happen can affect me a different way.
When death occurs, people often don’t know what to say. When I was working in healthcare, my speciality was grief related to chronic loss. (Geriatrics, dementia, and renal diseases) I was often asked to give talks about grief. I remember being asked about what to say or do. I responded with “I’ll tell you what not to say, don’t say (platitudes. I hate the platitudes) “it was his/her time”, “they are better off now”, “they are at peace, no longer suffering from their illness”…. and especially, don’t say “I know how you feel.” Yes, your dad died and my dad died, so I know what it is like to lose a father, or yes, our children both have a heart condition, or both have autism, so we can share our experience, but I will NEVER know what is like for you, and you will never know what is it like for me. The relationship that I had with my father is likely quite different than the one that you had with yours. The impact of their life and now death will be felt differently.
The fact that we may share the experience of raising special needs children means that we understand some things that others do not, but I can still never know what it is like to be you, raising that child, and vice versa. I think that as long as we are open to sharing and hearing what the other person is telling us about their experience, that is where we can be together in the experience. That is how we support and tend to each other. When we become so wrapped up in our experience that we let it dictate our view; narrow our focus and thus shut people out, that can be a problem. The support that we reached out for will not necessarily be there because we are not able to hear the other people, to accept what they have to offer. Granted, there are times when we will not be able to “hear” what someone else has to offer, (like when the crisis first hits) but over time, this is something that we should strive for. Supprting each other in our lives but never assuming that we fully understand what it is really like for that person.
Okay. Enough preaching. I’m off to go do parenting.
That ASD Mom 