Start from this truth: I love my children with the heat and light of the sun. They are the most fascinating and wonderful people I know. I do not love them all the same, but I love none of them less, whether they have developed typically or are disabled. They are both my home and my grandest adventure.
Even in the presence of this enormous love, there has also been pain so deep it became desperation, despondency, and terror. In the special needs community, there is a loud message that says parents (or other caregivers) of people with disabilities may not express these feelings. We are told that our pain is self-pity, our grief is unwarranted and unkind, and hate of our children’s disabilities is akin to hate for our children.
To be really clear, this is codswallop. Piffle. Crapola. Balderdash. Rubbish. Hogwash. Bollocks. Nonsense. Muddle-headed gibberish. Feelings are morally neutral, neither bad nor good, holy or evil. Feelings are part of being human and my feelings belong to me. No person may declare my feelings wrong.
In this alternate reality, a caregiver’s pain doesn’t much matter, and may be totally invalidated, because the pain of a child with a disability is infinitely worse. Being the parent of a child with mental illness, or cerebral palsy, or autism, or Down’s syndrome, or any other disability may be painful, but since the struggles of the person with the diagnosis are greater, the caregiver’s (usually a parent) pain is null, or worse, it could be called out as self-pity.
Again: codswallop. Piffle. Crapola. Balderdash. Rubbish. Hogwash. Bollocks. Nonsense. Muddle-headed gibberish.
In what my family will forever refer to as The Bad Years (the first eight or so years of my youngest son’s life), I was a tumble of hectic anguish. My pain cascaded out of my face and into the lap of every adult with whom I talked because I was far, far too wrecked to be able to put on a social face and pretend to be OK.
I was greeted mostly with platitudes and scolding. Platitudes hurt because they minimize or invalidate reality. When someone said God never gives us more than we can handle, I heard people telling me I was fine, that if I was in pain it was because I was being a wimp. When I was scolded with statements like you really just have to learn to accept this or you should be grateful he’s alive, I felt deeply ashamed (and what is it about pain that causes people to assume that there is not also gratitude?), which only compounded my agony.
And I want to tell you this: sometimes, during the years 2009-2011, I was in serious trouble. Very, very serious trouble, close to doing terrible things that would have put my family’s name all over the internet and most newspapers in the US and even internationally. I felt hopeless, desperate, and completely alone.
All the scolding had done its job. It silenced me. Even when I feared I would do the worst possible thing, I could not speak it. The feeling, I believed, made me evil, and I wanted to hide that evil. I hoped I could pretend it was not as it was. My family was very nearly destroyed by that silence.
Return, if you will, to the fact that I love all of my children, and Carter, my youngest and my child with disabilities, not one iota less than the others. I was in agony largely because he was suffering and he is my child and I could not ease his pain. He was a whirling dervish of misery and rage. He was sleepless, aggressive, and terrified and in spite of every effort, his torment continued, day and night, for years.
I was also entirely irrational by that time. I wanted to be a good mother. I could sometimes playact at being a good mother, but I was not OK. Years of extreme sleep deprivation take their toll. Years of fear take their toll. Imagine your worst experience with any of your children. For me, before Carter, it was when my daughter Abbie was a toddler and was sick with pneumonia. She was so miserable and fretful for four days that she only slept a few minutes at a time, and only when she lay on top of me. Her fever would spike to 105 and when I gave her antibiotics and acetaminophen, she would vomit it all over me, which in turn caused her nose to gush blood. It was a very hard 4 days.
Now imagine parenting with that level of intensity and fear (except infinitely more fear, because we had no real idea what was wrong with our child) for nine years. It changed me. It destroyed me. I am OK now, but I am not the person I was before my son’s disabilities tore me off my foundation. I am not stronger.
Eventually, I fell into the arms of some parenting support groups (online and in real life) and there, I spilled my tale of woe. It’s awful, so hard, how will we survive? He’s so sick and we never sleep and the medical and educational systems meant to help him don’t, and I can’t go on. I’m in agony. Returned to me, finally, was affirmation. Understanding. Yes, this is awful. So hard. We hear you. We understand you. You are not bad or evil. You are not alone.
I even spilled the darkest of truths, that at that time I wished I’d not had Carter. No one gasped. No one paled. No one misunderstood me and thought I wished this because Carter had disrupted my life. They understood that my beloved son suffered and it felt so damn unfair, so cruel. I felt selfish for choosing to have another child. How could I have created this person if his existence was nothing but torment?
There were no platitudes. No “he is here to test your strength” (he is himself, not my test), or “he is here to make you a better person” (he is himself, not my personal self-improvement exercise), or “God never gives you more than you can handle” (he is himself, not God’s telegram by which God’s confidence in me is communicated).
No one chastised me for my pain and anger. Never were the words self-pity used; never was I admonished to accept my son just as he is. There was simply hearing. There was kindness and understanding.
It may seem paradoxical (although it’s not), but it was finally being heard that enabled me to move away from depression, helplessness, and yes, self-pity, into a place of acceptance. That acceptance is not acquiescence and it doesn’t mean I’m happy my son’s brain was damaged before his birth, but it does mean that I no longer flail against it.
It was kindness, not condemnation that saved me. It was kindness that brought me back to peace and hope. It was kindness that helped me to be (however imperfectly) the mother to my son that I want to be.
My hope is that the special needs community of caregivers, loved ones, and people with disabilities will begin to make space for respectful expression of all feelings, including the darkest and scariest ones. A parent in pain does not have to be a parent ashamed.
Photo by Scott Boruchov