This month marks the year-end journey of my Happiness Project. I started these posts one year ago in June and have come full circle. I had actually thought that I would stop the posts and move on once I reviewed all the aspects of my life and added my own particular touch to the monthly topics. But as with all plans, everything changes. I found that writing on these topics was quite cathartic and that it brought some focus and meaning into some issues that I faced.
You see as I write how when it comes to your child’s autism, it is NOT about you or your spouse, but about your child, the Happiness Project posts were about YOU, or me or anyone you wished them to be. These posts are meant to be an examination of your world and how everything, including YOU, fit into your everyday life. What events mean and how you will approach them. That is why I have decided to continue with the posts. I will be using the same topics as laid out in the original plan, because even one particular word such as the word for June, which is “order,” can take on different meanings, at different times of our lives.
In fact the word “order” has had a profound meaning for me this week. Life is supposed to have an order about it; a reason that things happen and a wherefore and whyfore that they happen as well. There are the seasons and a time for everything under heaven, or so we are told.
But order is not something that we in the special needs community hold on to with all our might. Now do not confuse order with structure. Structure is that anomalous creature that allows our children to function and help them grow and develop. Order is the way of the world. How things are supposed to happen and how the world is supposed to turn. But it doesn’t always follow the path it is suppose to.
As everyone who reads this blog knows, I posted a farewell to a young woman who the world lost at an incredibly young age. I did not really know Jennifer at all, except for the few times she was on The Coffee Klatch, but somewhere deep inside was a visceral feeling of loss. The interesting thing about my feelings was that at first I had read the obituary wrong and thought that Jennifer had lost her new baby shortly after birth. The irony of all of that is that it didn’t affect me so much. I felt bad but it did not alter my day at all. Later when I reread a post by someone else and realized that she was the one that died; it overwhelmed me for a while. It became very very personal. I mentioned this to brilliant-computer-sis how upset I had been and she put it like this…. we live in a world, we parents of special needs children, where it is not uncommon to hear that a child has died. It does not make us inured to the loss by any means, but it is something expected, especially when you know that an older child has had medical issues, but the passing of a “mother” or a “father” at such a young age is totally unexpected. It was something I could identify with being a parent.
After thinking about what she said, I partly agree with her and I partly don’t. I agree that we live in a world where a child’s mortality for many of us is just part of the package that we deal with. Medical issues that surround our children are overwhelming so it is not unfathomable that something terrible can happen. In fact, we have had many guests on The Coffee Klatch who have buried a child; Marianne herself lost her son in a car accident when he was sixteen. So yes we hear about it a lot. It is the unspoken reality of modern parenting that no one, not a sole, not even the doctors will admit to. The admiration I feel for these parents who can keep going and actually turn their tragedy into something that actually helps others is immeasurable. So what was it exactly that I felt this past week. I think it was many things: the tragic loss of a young mother leaving a 4 year old and a truly newborn. I felt it in my life. I felt it through my soul. I think so much of it is my own fear. Dying before the boys are truly ready to stand on their own two feet. Hubby had even said that to me the other day when neither of the boys could function through a simple household chore properly. “We can’t die anytime soon,” he said. “The boys are just not ready.”
Honestly, I also had lost a good friend of mine when she was Jennifer’s age. That was over 15 years ago. I lost touch with her husband. Truth be told, we never really liked each other, but we made our relationship work for my friend (we both loved her you see), and after her passing, even though I had tried there was no way to keep a relationship just for my late-friend’s sake. He had family support of his own and her family to support him as as well. I have to admit I do google her daughter's names once in awhile to see if graduation announcements are anywhere to be found.
Also, on top of my friend being a truly good friend, her oldest daughter was collegeman’s first love. They were three years old and head over heels for each other. I think the memories came back this week too. It reminded me of my own personal loss and how I wished my friend was still here to have seen her girls grow up and to send them off to college. I feel cheated in some way because I know we could have been here for each other and to help celebrate our children’ triumphs and complain about our menopause together. I still miss her and whenever I hear a particular song playing that I associate with her passing I still start to cry. Even after all these years. I don’t cry for anyone else, not my in-laws who both died relatively young and not for any of my grandparents. But I still cry for my friend. Here is the song:
But eventually when all the psychology books are put away and the inferences and the revelations are gone, the reality is that a young woman passed away for no reason this week. No reason what so ever. Honestly I do not know if God even knows why he lets things like this happen. Of course I could always talk to collegeman about the Holocaust and get a discussion of God’s callousness, fickleness or even God’s hubris in the face of allowing evil to persist, but collegeman has his own issues with an omnipotent deity and we shall just leave it at that. (Job is not thought of well in our house, can you tell? We consider him a bit of a putz.)
Now another event concerning order happened this week. One that had me well quite a bit on edge. My mother actually almost died. She had a bleeding ulcer that she did not know of, that hemorrhaged and my father found her lying in a pool of blood. Luckily they were able to get her to a hospital in time and she is home after a week in intensive care. The doctors said she had lost half the blood in her body. But with the help and the care she received in the hospital she has a terrific prognosis. And yes, I got yelled at for even the thought of flying down to help or do what ever I could, and so did my sister. At least my mother let me send her flowers and I called every few hours every day to make sure that I really wasn’t needed. And yes they live in Florida in a gated retirement community with everyone else's retired parents from New York, and New Jersey. You say why did I listen to her and my dad and not fly down anyway? Quite frankly because if I would cause her more stress, which would cause her to bleed again, then my thoughts of going to help would actually have the opposite effect. So I stay put for the time being. I tell you some old folks are very stubborn. Luckily for my mother it’s her stubbornness that will help her survive.
So again I thought about order and how life has its purpose and its reason. My mother was very very lucky. We all were very very lucky not to loose her. The order of our lives means that I am not going to be an orphan yet, which is good since at 50 I still think I am too young for that. I know my poor husband became at orphan in his early 40s. You know they say that no matter how old you are when both of your parents pass, you are suddenly an orphan. It is a profound thought and one that has more of an effect on you than you think. You are no longer someone’s child, and even if you are an adult and have been and adult for a very long time, your relationship to the universe changes. I can honestly say that that is not a relationship change I am looking forward to and if there is a God out there in the cosmos, then may he grant my parents both lives to their 120th year at least. (That is a Jewish blessing. Moses the lawgiver, the one who led the Jews out of bondage in Egypt is said to have lived to be 120 years old. So we Jews wish those we love to live as long as Moses. Now for those we do not care for, well, there are any number of curses, which by the way, do sound better in Yiddish than English or Hebrew for that matter. HeHeHe.) While not a curse, the boys after watching this VIDEO have decided that whenever I ask them to do something they tell me "kish meir yiddishe tuchas." After which they break out in peels of laughter or even just a huge Cheshire cat grin. Remember if you choose to watch the video it is tongue-in-cheek, whichever cheek you choose.
Anyway in thinking about order this month I am reminded of mortality, love and loss and how order does not necessarily work the way you want it to. Whether it is how our children develop and how we need to rethink what exactly is a milestone in our world, or the thought that the seasons, which seem to be really screwed up this year, may have a mind of their own. I was reminded how sometimes you can bless God for the order of things, and thank him for really really good emergency room doctors and EMTs but that sometimes the reality is that God is also a real shmuck.
Until next time,