That has become my automatic response to the question “How are things?” or any variation of it. I believe this is true of a lot of special needs parents. Since Judy’s passing I also get this question a lot more.
The reason? There are several reasons but the main one is most people don’t really want the truth. You can see it in their eyes when they ask. How would someone respond if you told them the truth? Things are shit. Life has stepped on me and kicked me in the face repeatedly until hope seems distant. No-one really wants to hear that. They ask because that is what is expected of them. They don’t really want you to open up, even though they do actually care. Maybe it is just something most people are not equipped to handle. If I responded by telling you things are great, I am watching my child die slowly a day at a time and there is nothing I can do to stop it; how would you respond? Not to mention the haunting images of watching Judy fade before my eyes that still plague me.
My guess is no-one could respond to that. I doubt I could if I did not have personal experience.
Another good reason is that sometimes it is all we can do to get through the day without focusing on the underlying truth that consumes our lives. We try to busy ourselves with the mundane in the hopes that while we are not looking a medical miracle will appear; A cure will be found, or at least a treatment that will slow the progress of A-T. So we deflect the question with the simple phrase “everything’s fine” so as to avoid looking into the darkness within. That is usually what our nights are for. I have spent many a sleepless night laying awake in terror over what the future holds for Daniel and my family. I have stood and watched Daniel sleeping and been unable to hold back the tears when I think of just how hard his life will become, and how short. No child deserves this. It terrifies me to the center of my being.
Other times the question is truly sincere and the questioner is prepared to listen to it all. If we choose to deflect do not take it personally. Chances are we are having what we would term a good day and do not want lose that rare feeling, or maybe you are just not the person we are prepared to open up to that day. I personally have very few people that I feel comfortable exposing myself to on that deep a level. Such is just the way I am wired. I often find it easier to pour my thoughts into these words than to verbalize them. Here it just flows and I do not have to deal with the discomfort I see on ones’s face when hearing such things.
We also sometimes just don’t want to dump our problems onto others. Everyone has their own issues to deal with, why should they have to listen to mine as well. We don’t want to be the person shouting ‘woe is me’. I know many people say that you don’t have to carry the weight alone but that is bullshit. You always carry it alone. Every family member carries it alone, we just carry it alone, together. Talking to someone does not make it feel better nor lighter. It just gives you an outlet to voice your fears and hopes, it just depends on the day as to whether we need that outlet right then.
People also say that God does not give you more than you can handle. Those people I often want to punch fair in the face. If Daniel’s condition and Judy’s cancer were ‘given’ by God then my thoughts on God would be unprintable. Fortunately I do not subscribe to that train of thought. It is an ignorant comment made by well meaning people; those who are just looking for something comforting to say to make us feel better, to make us feel like we are not alone.
I’m not sure what I intended when I began writing except to make everyone aware that ‘fine’ usually conceals the chaos that lies underneath the surface for a special needs parent. It is a shield we throw up before the world; sometimes it is something we even try to make ourselves believe in an effort to get through the day whilst we reach for hope; hope which may never come.
So always ask the question, you just never know the response you may get. It may be the day we need to talk, and you might be the one we choose to talk to. But regardless of our response, it will always let us know that you care, and more often than not, that is enough.