“To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength.”
― Criss Jami
It’s the worst when you feel embarrassed about your child. Maybe that’s not the right word; I guess it’s more that I feel incredibly exposed when the messiness of my life gets so public. It’s the same way I felt in 7th grade when my period leaked all over my white jeans, or when I once accidentally farted on a first date; so utterly human and so completely horrified by it. Joaquin’s challenges sometimes take me right back to that uncomfortable place where I am forced to face my awkwardness. Bless his little Buddha soul that he doesn’t give one damn about it, so I don’t have to deal with the emotional challenge of him feeling shame or embarrassment about himself.
In the early days of being a mom to my son, the lyrics of Paul Simon’s Graceland would haunt me. I felt my pain was, as he described, “like a window in your heart, everybody sees your blown apart, everybody hears the wind blow”. I felt like people could only imagine my sorrow at Joaquin’s condition. I wanted for people to understand that the dept of my misery only mirrored the depths of my love, but I was exhausted, emotional and uneloquent.
I thought that I knew what others were thinking, because only recently I myself had felt so completely horrified at the thought of parenting a severely disabled child. It took me a lot of parent’s groups and therapy to realize that believing I could take on what other people thought of my life was not only a futile task but it was draining me of joy. Listening to the Buddhist teachings of Pema Chodon has taught me that I can learn to let uncomfortable feelings arise (offended, sadness, anger, embarrassment etc…) and not attach to them. In other words, I’m learning how not to give those thoughts power. Because the truth is that my family’s life is just messier than most people’s and sometimes that mess is impossible to hide, and who wants to feel like they have to hide a part of their life anyway?
So, I’m trying get a better sense of humor about our family’s folies. Take for instance on a recent flight in Argentina, when I could smell that Joaquin was packing something in his diaper. Normally I would just try to take care of it right away, but navigating the small bathrooms is getting more and more difficult as he gets older, and he was sleeping so soundly, and there was only an hour more on the flight. I thought, just this once I will tuck the blankets around him tight and wait until we deplane to deal with it. But soon I could tell this wasn’t going to be a simple diaper change, the smell was, well, abnormally unpleasant. I assigned Nathan the task on landing, clearly we weren’t going to make it off the plane without changing it, but at least we could wait until the plane was empty. I was reassured that I (now) know to travel with several extra changes of clothing. Still my husband and son seemed to be in the bathroom an inordinate amount of time. The airline crew were practically tapping their watches to tell us to get off the plane. Finally the two of them emerged from the bathroom and Nathan quickly ushered us off. “I left a mess”, he explained sheepishly. “There was so much poop on everything, and it smelled so terrible in the bathroom, and I couldn’t figure out where the garbage was, so I just left the pile of clothes and diaper in the sink”. Well, that’s one way to deal with it I guess. We practically ran off the plane thinking we had gotten away from the ordeal when we saw that, on the tarmac about eighty people were impatiently waiting for us to board the tram so we could be shuttled to the baggage area. Ooops. Next time I will just deal with dirty diapers at the time they arrive.
There is a vast difference between enduring and resilience and I like to think that our family falls in the later category. I read this quote in the New Yorker recently and felt a moment of pride, we’re surmounting!
I am beginning to see how even our worst days and most horrified moments, can eventually bring us laughter. Last year as a family we went to a birthday party for our daughter’s friend, most of the people there were strangers to us. It’s always a little hard to navigate what to do with Joaquin at other people’s homes- bring a stroller in the house (the wheelchair is too hard to navigate if it’s not ramped)? Try and prop him up with pillows over and over on someone’s sofa? We decided on a stroller- however it had been left out in the rain so we had to put a towel down in it, and that meant the straps to buckle him in wouldn’t fit over him. A series of unfortunate events occurred about 5 minutes after we walked into the party. My husband tripped over a small half step while pushing the stroller, Joaquin toppled out, hit his tooth on a stair and started screaming and bleeding everywhere. Then, in my husband’s frantic effort to pick him up he spilled a beer all over Joaquin’s head. You could practically hear the record stop; not our finest moment. Joaquin ended up being fine but we became so uncomfortable that we couldn’t leave the party fast enough. At the time I was traumatized, worried about how we must have appeared to everyone, i felt so raw and exposed. But now I think of that memory and laugh, I can’t believe how ridiculously we acted, how at that moment we succumbed to our anxieties.
Joaquin has forced our lives to become an adventure, an adventure not only in the world outside but also in the often more mysterious world of our own emotions. In Far from the Tree Andrew Solomon quotes a Buddhist scholar; “Nirvana occurs when you not only look forward to rapture, but also gaze back into the times of anguish and find in them the seeds of your joy“. While I’m not sure that I’m headed for Nirvana, Joaquin is certainly teaching me how to flourish, not in spite of, but because of our imperfections as a family.
https://www.youtube.com/watch?v=rDXzLeFUkpc
please don't cue the sad music 