Today, I am having a bad day. I feel obligated to be happy all the time or at least write about being happy. Maybe I don’t want to upset my newly found readers. I really feel bad that I feel bad. I feel like I might be letting people down.
As I stood in line at Toys R Us today to buy Chanukkah presents – after just getting off the phone with hun who who mentioned in a very kind way, that I have been sucking big time at managing our finances – and, yes, I see the irony here, I continued to wait in line with nothing but my own mind to keep me company.
I finally allowed myself to admit that this has been a very long and very crappy year. I reflected on the events of this year and the mixture of good and bad is so interwoven that I almost cannot figure out where the boundaries should be drawn. It seems to me that fairness would dictate that good should be good – and bad should just be bad. But, I had a trouble finding the good without the bad and despite my foul mood, I keep finding some good among the bad. Furthermore, as I often do, I tried to temper my own self-pity by remembering that bad things happen to everyone. The problem I had with that theory today is that when a misfortune happens to others, it seems isolated. Excepting of course, the truly tragic, most things for most people seem to get better. A broken bone that heals, an illness that ends, a personal dilemma that resolves itself. During the pity party of today, I feel like our problems never ever ever go away.
I began, of course, with Max. The store seemed to shout at me a bunch of toys he can’t play with. This happens every year – as he has never really been able to use most of what is available in the world around him.
He is now a big boy, a big boy with big boy CP. He goes to school now, but needs constant help. Preparation for him to attend school requires me to dress, him, carry him, wash him, force him to eat, put on his braces, put on his glasses, get his walker, assist him in getting on the “small bus,” ensure that his aide is ready and able to help him once he gets there, daily calls from school from the nurse and frequent conversations with the teacher and therapists. All of that usually happens between 7:00 and 8:00 a.m.
He walks, but only wants to run. He has friends, but can’t really play with them. He might be learning to read, but he can’t see very well. He tries to write, but it exhausts him. He is getting stronger, but is having accidents every day.
He sleeps better but underwent surgery this year to make that possible. He is much healthier than he was, but is more unhappy. We are still managing with the casts for a another week or two and while the purpose of them seems to have been achieved, it was no magic bullet. Only further proof that there is only so much that can be done and progress will only ever be seen in tiny slices. Progress is good, but the struggles are painful and exhausting.
The year, of which much was chronicled here, included all the things that transpired for Max – from the good beginnings in Kindergarten, to the frequent bumps along the way, the doctors, hospitals, and all procedures and adjustments that had to be made. On the whole, I can’t seem to figure out whether we ended up positively or not. Does ending the year with more equipment, more help, more intervention, and more professionals add up to good or bad? Does is all come out equal? Is there never any excess good? We got one new car, but had an accident with the other. We made new friends but seem to have lost a few old ones. We worked and worked but have nothing left. I cleaned the house, but now its dirty again.
This past year also included constant care for my mother. During the course of this year, when it wasn’t Max it was her. She suffered through pneumonia, 2 hospitalizations, a surgery, a broken leg, multiple visits to rehab, therapy, doctors and follow-ups. The time spent keeping her alive was constant. At least half of my weekly spending was for her. All of this was done by me and me alone. Of course, Hun helped with the kids, and many babysitters will be purchasing new cars for themselves with Rubin funds. The problem here is that there has been virtually no good to temper the bad. The good might be that she is still alive and able to sit and have coffee and chat with me daily and I for that I am grateful. But her physical deterioration has been so significant that I question the purpose of living long enough to resort to wearing diapers and living with caregivers. Where is the fairness there?
Sophie, on the other hand, might be the shining light of the year. She has blossomed into a happier, calmer and more content person. She seems to have wrestled with some of her demons – and yes, a 9-year-old can unequivocably have demons – and won. She has emerged from this past year, either by her purposefully design to balance out her environment or by of divine intervention, into the child she was meant to be. It maybe took us all these years – 7 to be exact – to erase from her the damage of the first 2 years and to learn to parent better. I have often thought that in this year, a miracle has occurred.
Through this all, there have been moments that make me realize I am living a not-so-ordinary life. Just yesterday a woman I spoke with casually about her son with a disability, stopped me at Target ( yes, I do spend a lot of time shopping)to tell me that our conversation enabled her to make things better and now he is in school and thriving and she couldn’t be happier. She says I saved her…how is that possible, I can’t even save myself?
Another person stopped me in Walmart ( ok… I know, I know) and told me she saw our film , “Saying Yes” and she was so moved by it that she feels like a better person knowing us. The making of this film to me, was the other shining light. It has touched people all over the country and will continue to do so when portions of it air on ABC this month. We made that happen.
If we can make these things happen for others, if there is karma of some kind, when, when, when can we get a break too?