Yesterday, during Monkey’s therapy session, I found myself trying to choke back tears about his upcoming medical procedures and everything that he’s been through already. He is certainly not the most disabled child – he appears more or less “typical” – but he has been through and continues to go through far more than typical children do. He’s not two yet and I’ve lost count of how many times he’s been under general anesthesia or will be by the end of this summer (7? 8?). Trying to figure out the best way to group together his upcoming surgeries and dental work while watching the therapist try to get him to touch applesauce, I felt suddenly overwhelmed. In fact, I felt grief. As fortunate as I know we are, I wished that our life, his life, could be a little easier.
I’m putting this out there so that parents who read what follows have some context for my thoughts. I’ve also been a professional caregiver for individuals with more severe disabilities. I’ve watched clients’ basic life skills deteriorate. My son has regressed a couple of times and although he has since gained those skills back, it is heartbreaking to watch your child go backwards at a time when they should be soaking things up like a sponge. It’s heartbreaking to watch your child suffer, to see them experience pain they can’t describe to you. There’s no doubt that having a child who’s disabled and/or medically complex comes with a big helping of grief.
But there’s something I hear other parents of kids with special needs say, which I find odd. This is that they want a “normal parenting experience.” It usually comes up in the context of wanting to have another child so they can have this experience. Or they may tell each other it’s OK to grieve the “normal child” they thought they were going to have. That only makes sense if you expect to have a “normal child” in the first place.
I don’t want to judge or police anyone’s feelings, but I am curious where this idea comes from. It seems like a very contemporary idea. In the past, I imagine people whose first child had disabilities would have more children so they’d have someone to work on the farm. Now we do it because we want a certain experience of parenting. Interesting.
It’s similar to women who’ve had c-sections wanting to experience natural childbirth. I had a c-section (after a couple days of labor on a magnesium drip) and am not a candidate for VBAC so this wouldn’t be an option for me anyway. But many women feel that they must have a VBAC, either because they think their c-section was a failure somehow, or they want to have a particular experience of childbirth. They want to experience childbirth without medical interventions, in their home, in a tub, etc. They want immediate skin-to-skin. (Monkey was rushed out of the OR before I got a chance to see him.) They don’t just wish these things had happened, they feel a need to make them happen, to re-do the experience. Again, interesting.
My attitude towards life is much less oriented towards having certain experiences and more oriented towards surviving the ones I do have.
I didn’t have a “normal” childhood, or “normal” college years, so why should I expect a “normal” parenting experience? Nothing in my life has set me up for this expectation. On the contrary, life has prepared me to expect that my mind and body will malfunction in various ways and that human kindness will be balanced by plenty of infuriating human stupidity, meanness, and even abuse. This may sound pessimistic, but to me it’s realistic. I always find it a bit funny when people ask in shock “Why me?” because they had a child with Down Syndrome (or whatever). Why not you? This is life. Life is not a series of perfect experiences. Previous generations understood that. Other societies understand it. How incredibly spoiled we are to ask this question, we who don’t experience daily bombings or famines or continual civil war, who are so well equipped for survival that we expect experience to cater to our desires.
My birth experience was traumatic in the full sense of the word, but Monkey and I both survived it, which is the goal of childbirth. I don’t feel the need for a do-over. If I have another child, I hope that the birth won’t be like that, but that’s because I don’t want to go through it again, not because I want some other particular experience.
Monkey comes with a lot of complications, but I love being his mother. I don’t feel the need for another child simply so that I can experience on-time milestones and 15-minute routine doctor’s visits. Aside from all the ways in which my son is awesome, I’ve learned a lot about hospitals, medical conditions and equipment, and child development that I would never have learned with a typical child. I’m learning English signs and AAC techniques. Doesn’t that have value, too? Why aren’t parents of typical children jealous of my parenting experience?
“Man, I wish I had therapists coming to my house almost every day. I get so lonely sometimes.”
“I wish I had so much medical knowledge just from parenting my child that doctors and NPs asked if I work in the medical field!”
“I wish I knew as much sign as you do!” (One mom we had a playdate with actually complained that her son wasn’t signing as much as mine. I had to bite my tongue to keep from saying, “That’s probably because your son has comprehensible speech and mine doesn’t!”)
“I wish my kid ate the same foods every day, predictably, like yours.” (This is because Monkey only eats about 5 solid foods. He doesn’t have the luxury of changing his mind every day.)
“I wish I got to spend weekends in the hospital regularly. Did they really bring a therapy dog to play with him while he was inpatient?”
“It must be cool to have a group of specialists photograph your child and discuss him at national conferences. I wish my child got that kind of attention!”
This is tongue-in-cheek, but there’s a grain of truth in it. Being difficult or painful does not make an experience not worthwhile. In fact, although too often we ignore and silence them, there are also times when we specifically turn to people with such experiences – experiences of war, discrimination, chronic or terminal illness, abuse – for insight. Experiences like this can lead to great works of art, or to advocacy that achieves real social change. It doesn’t mean we covet such experiences for ourselves, or that we shouldn’t try to eliminate the causes (violence, disease, prejudice); but those who have survived them without asking to should realize that they have something which is valuable to others.
But society continues to tell us that “normal” – in the sense of easy, painless, and uncomplicated – is not only what we should look to and desire, but what we should expect. As if life were all about achieving certain norms.