The first time I became aware of breaking points as a special needs parent was when I was sitting in the dentist chair one month after my three-year-old’s brain surgery. I had left a house full of medications, post-surgery vomit, and emotional turmoil behind to have my teeth scraped free of plaque and made clean for another six months. Or so I thought. Instead, my dentist found two small cavities that needed to be filled. And that was it. My breaking point. Something as small and mundane as a cavity brought on a flood of tears that froze my smiling, brisk dentist and cheery dental hygienist in their tracks. But it wasn’t the cavities themselves that had my eyes filling with tears. It was simply the thought of another medical appointment, another demand on my time, another thing to deal with.
I already felt alone, disconnected, and trapped in a web of thoughts, feelings, tasks, and worries that no one else could truly understand. But I had sat quietly and patiently in the chair, trying to chat with the hygienist, keeping the tide of darkness building inside me at bay. In situations like these, no one knows we are special needs parents unless we disclose it. And I don’t always want to do this. It’s not always pertinent or appropriate to share, and sometimes I just want to pretend I’m carefree for the span of a single social interaction. So of course, the women weren’t aware of the storm that had been brewing inside me or of what I would be going home to. They couldn’t read my mind. To them, my tears came out of nowhere.
If you are a special needs parent, you know my tears simply signaled another breaking point. They were yet another instance of the day throwing too many curveballs at me, of life asking me to bear one more thing beyond the point at which we feel things can be borne.
But there are two very different kinds of breaking points I have noticed in my life. First, there is the “cavity phenomenon.” These are the times when life tells me, “You thought you had just enough emotional energy to get through the day? Well, guess what? Surprise! Here is one more unforeseen thing to squeeze onto your agenda.”
My brain is already at capacity, but that doesn’t matter. I don’t have the luxury of reaching capacity and simply stopping there. I must move beyond it—into the space where hearts break and words can’t explain what is happening and sanity goes to die. I reach this kind of breaking point every few weeks. It’s usually a slow build. Sometimes I can even feel it coming. It's almost a relief when that last thing cracks me in two, releasing the pressure that has built up with every new appointment, text, email, phone call, pharmacy run, sleepless night, or demand on my time.
I’ve found that if I’m in private when this happens, then it’s relatively okay. I let the pressure release and the tears run their course. After that, I’m a blank slate again, ready for the next wave of pressure to build. But if I’m in public when life throws that final curveball, it’s infinitely more embarrassing. Suddenly, I’m in Panera crying in front of my fellow book club members or at the gym stumbling from the treadmill to the locker room, head down and fingers wiping at the corners of my eyes. Just let me get through this, I think. Let me make it to a place where I can fall apart without terrifying anyone. Because I don’t want to be known as that lady. The one who cried. The one who made everyone uncomfortable.
But as bad as this type of public humiliation is, there are other breaking points that are infinitely worse. These are the times when I am hit by the little everyday things my child will never experience. I’m suddenly overwhelmed by a tidal wave of pain that seems to come out of nowhere. It’s usually brought on by something small and poignant—those tiny huge things in life. A word my daughter will never say. A dance step she will never execute. A pair of princess underwear she might never put on.
The first time grief broke me like this I was in our bathroom. As I washed my hands, I stared down and noticed a food stain on my favorite pair of sweatpants. I had just fed JJ her daily dose of pureed prunes with crushed vitamins. They’re messy and stain easily and she doesn’t love them, so it’s never a fun task. The prunes aren’t the only thing that stains my clothes, though. There is also drool, vomit, thickened liquids, and a host of other kinds of food. I should buy stock in Oxiclean, considering how much of it I use on a weekly basis.
But it wasn’t about the pants or the prunes or the laundry. Not really. It was the fact that my daughter suffers from a syndrome that has robbed her of the use of her hands. She will always need me to feed her. There will always be stains. Barring a miracle drug or gene therapy, there will be so many things—big and little—that JJ won’t ever do with her hands. She will never know the joy of holding a fresh baked cookie up to her mouth, of picking out a familiar tune on the piano, or of tracing a favorite word on a lined piece of paper at school. Instead, I will feed her prunes, hold straws up to her lips, and pull her arms and legs through articles of clothing for the rest of her life. To me, the stain held all that sadness, all those stolen moments, and all the struggles large and small of a human lifetime.
And so, I sat down on the lid of the toilet and cried. For all the things my child would never do. For all the things I would have to do for her. For all the things we would become so used to that we would eventually become numb to their sadness.
Every parent’s threshold for grief is reached in different ways and triggered by objects and moments that have special meanings only for them. But it’s often the mundanity of those objects and moments, the everydayness of them, that slice our hearts open. Because nothing cuts more sharply than reality, and nothing is less escapable than normal life. The best we can do when these moments of grief hit is to let ourselves feel them to their fullest. It might not be feasible right then and there, but we need to make space for ourselves to process those feelings whenever and however we can.
I don’t know when or if I will find true peace with my situation. But I do know that once I fall apart and come back together again, it allows me to find a peaceful way back to my normal life for a time.
Until the next cavity needs to be filled, that is.
What have been your breaking points? How have you dealt with them? Are there other kinds of breaking points I haven’t talked about?
Let me know in the comments below.