Life is very hard at the moment. I say “at the moment” when what I mean is for almost a year. May’s hip surgery. The inevitable awful recovery. Leukaemia… what a party that was.
Throughout this, I’ve had people remark on my strength when I feel weak. How inspirational I am when I am without purpose. What a great mother I am when I spent months away from my kids.
Here is a post I wrote for The New York Times called ‘A hero or just a parent?’ when May was only 1 1/2 years old. It is a good reminder for myself, if not anyone else – that I’m only a person. Not a hero or an inspiration or even great. Just me doing the best I can.
First, apologies. Apologies to all the well-meaning people who don’t know me. You who lend me your support commenting on my blog and at the pharmacy and friend’s parties and all the other places I encounter people with my severely brain-damaged baby. I am apologizing so I don’t offend you. But, I fear, I will end up offending you regardless.
I’m speaking specifically to those who admire me because I’m the parent of a disabled baby.
People are under the mistaken belief that as the parent of a disabled child I deserve admiration. Some, amazingly, even tell me that I’m a “better person” than they are. So, am I more devoted, more loving, more ambitious than other parents? The reality is, I am no different than you, dear reader.
I am no different, and that must be very frightening. I did not do anything to deserve a disabled baby. I did not do anything to be rewarded with her. I had a normal pregnancy. I took excellent care of myself. It happened to me. The truth is, it can happen to you.
This week alone, two doubtlessly kind people commented on my blog. They claimed I was “their hero.” I didn’t do anything to achieve this, certainly nothing heroic, unless, unknown to me, attending May’s physiotherapy appointment has now been elevated in heroic importance.
Not only do I not want to be anyone’s hero, the fact is I’m not any kind of hero. I’m plainly not.
For one, I’m not perfect. I swear. Too much. Often in the company of my daughter.
And I’m lazy. I do a lot with May and for May. But I also like really bad television. Sometimes, I lay May down on her play mat, not to give her time to relax on her own, but because I want to watch “The Gilmore Girls,” which I own on DVD. I’m ashamed to admit I own it and love it and have watched all seven seasons twice. But, I’m not ashamed that I take time to do what I want.
Also, everyone likes a hero, and not everyone is a fan of me. I am determined and persistent. Which is good. Unless you are on the other side of it, and then I am just unappreciative and rude.
When I found out May was brain damaged, my first thoughts were not noble, honorable ones. In those initial weeks, as I began the long and painful process of accepting the situation I found myself in, my desires were selfish ones, including a wild wish to run away. Today, when I cuddle my adorable daughter, I am relieved I did not act on those desires, but that doesn’t mean they didn’t exist.
It was very lonely sitting by May’s incubator. My eyes would be drawn to the cityscape outside her window, a whole world of people going about their business, oblivious to how suddenly life swerves away from normal. My mind would wander through the various nightmare scenarios of my future. Every one was a variation on the two of us, forever trapped in my 2-bed apartment, ensnared by all the wires and tubes and machinery necessary for May’s survival.
We left that nightmare behind at the hospital six weeks after May was born. My visions, of me imprisoned with May, my husband nowhere to be seen, seems absurd compared to our reality. Where is the baby that the doctors thought would be tube-fed for the rest of her life? Smeared from head to toe in peanut butter and jam, jamming her hand in her mouth for more. Where is the baby the doctors thought might never be able to express her emotions? Laughing so hard she can hardly breathe, my husband the comedian causing all the hilarity.
None of this makes me a hero. I didn’t achieve anything in those first weeks or months – she did. I didn’t do anything, certainly nothing heroic.
Even now, I worry about myself and my future. I worry about her too — of course I do – but I refuse to believe that my future is entirely dependent on her condition.
I’m not ashamed; my life is as valuable as hers. I’m not prepared to relinquish mine for hers.
Heroes sacrifice their lives for someone else. I do not. I care for and work with May. I love and adore her. That is not the same as devoting every waking minute of my day to her progress and pleasure, at the sacrifice of all else.
I am not the parent of a disabled child out of choice. The phrase “I could never do what you do” surfaces frequently. I didn’t have a choice. When the impulse to run away was strong — and it certainly was — society, my upbringing, Jewish guilt, the pressure I placed on myself, insured I chose May.
The fact that some people in my situation abandon their children does not make me a hero, it makes them assholes.
I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.
To this, I add a final thought.
It will come as a shock to some.
I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.
There are many people in the world who are alone and unhappy. Pity them.
What do you think? Are parents like me heroes or just parents?