In the waiting room for one of Monkey’s appointments yesterday, I saw a mother with a baby on oxygen. I recognized the equipment immediately – same DME that supplied ours until a couple of months ago. After a minute or two of hesitation, I smiled at the mother and said, with a nod towards Monkey who was climbing on the furniture, “He was on oxygen for 18 months.”
The exchange that followed was awkward. Suffice it to say that the other mother was pretty cold towards me and made it clear she had no real interest in hearing about Monkey’s situation or in talking about her daughter’s. OK, that’s fair. I will admit, though, that I left feeling not only disappointed but confused.
When Monkey was around 6 months old, a mom came up to me in a doctor’s office and told me that her son had been on oxygen for 2+ years. It was like Christmas. I wanted to know everything – what hospital did they go to? Which pulmonologist did they see? What tests did he get? Did they ever figure out what was wrong? What did they do when he started crawling? Did she hate Apria as much as I did? Did he continue to have ongoing breathing issues?
Having a medically complex child is frightening, isolating, and lonely. It can be difficult to relate to parents who aren’t dealing with similar situations, or for that matter, even to meet other parents because you spend so much time at the hospital or in quarantine. There are also a lot of unknowns and the medical system is difficult to navigate, so when you meet another parent who’s been going through the system longer, who knows the local setup, it’s worth picking their brains. I’ve had other conversations with mothers who seemed as eager as I was to talk about their child’s NICU stay, to compare experiences with a given specialist, to discuss formulas and therapy clinics, sometimes even to exchange phone numbers or email.
But I’ve also had several encounters like the one yesterday, with mothers whose children obviously had some sort of condition or disability, who made it clear that they did not want to talk about it. And I do wonder about these mothers.
I wonder what went through the mind of that mother yesterday. Was she too traumatized to discuss her daughter’s medical situation?
In Monkey’s early days, I dealt with the trauma by telling anyone – everyone – who would listen all the details of Monkey’s difficult birth and medical complications. I didn’t necessarily want to tell them this; it just spilled out of me and I couldn’t stop. But everyone deals with trauma differently, some by talking too much and some by not talking at all. I understand that.
There is another possible explanation for these mothers’ reaction, though. There’s a wonderful film called De eso no se habla, or “I don’t want to talk about it.” It’s about a woman in a village in Argentina whose daughter is a dwarf. This mother not only refuses to mention the fact that her daughter is a dwarf, but makes sure that no one else in the village mentions it either. (She burns a number of children’s books, such as Thumbelina and Snow White and the Seven Dwarfs.) At the end of the movie, the daughter, who is now a married woman and a gifted performer, runs away with the circus. Although her life is basically good, she can’t live in a situation where everyone pretends not to notice that she is a dwarf, denying this aspect of her individuality.
The mindset of the mother in De eso no se habla is foreign to me, but I know that many people feel similarly about their children’s disabilities, even if they don’t go to such dramatic lengths as in the movie. I wonder if the mother in the waiting room thought I was impossibly rude for noticing that her daughter had oxygen equipment.
About a year ago, I went way out of my comfort zone and tried to set up a local support group for parents of medically complicated children. I asked a friend who is much more socially connected than I am to spread the word to some other parents she knew – and she balked. These were parents who had children with cerebral palsy, Down Syndrome, etc. She was afraid that they would be offended by the mere suggestion that they might be interested in a support group. She thought it would be rude to draw attention to the fact that their children had disabilities.
Maybe I’m in the minority, but I don’t think there’s anything shameful about wanting or needing support. I don’t think there’s anything shameful about a baby on oxygen or an autistic child. As long as parents act like these things are shameful and not to be discussed, they are prolonging and intensifying the isolation experienced by other parents and, worse, by their children, who will grow up in a world where their experience is suppressed and unacknowledged.
Again, I don’t know what this particular mother was thinking or feeling. This is just a general plea to other parents.