I’ve learned a lot lately about crying. When you cry over the loss of a child, the breath comes straight from the diaphragm. The noise isn’t a weeping sound as much as a moan.  Like a creaking door. Your chest feels hollow, and you’re scooped out like a pumpkin. Your whole body is haunted. The grief is carried in your chest. It feels like an empty birdcage as if something is gone that was in that space. Or that’s how it is for me. It still feels that way most days.

The night I watched the funeral home take away my 29-year-old daughter, Kathleen away in a windowless white van, I just kept saying no over and over again, like a scene from a Lifetime Network movie.

My impulse was to go in the back of the van with her, like I had when an ambulance took her away after a particularly bad seizure. Kathleen didn’t communicate well and never went anywhere alone. So, watching them drive away with her was particularly unnerving. Surely, she would wake up and need something that those strangers wouldn’t understand. Surely, she wasn’t dead. But I had seen her body with her visible blue hue that I now know is a natural stage of death. I learned about the 4 stages of death which comes in handy when I watch Forensics Files.

As I rapidly approach the one-year mark since her death, I’ve worked to manage my time without her. It is a different life. I am a different person. Could it be that I’m a better person? We will see. In the 1990’s parents of kids with disabilities were sometimes called Exceptional Parents. Not because we were better than other parents, but that we have contingencies and issues that make our experiences different. Now that I’ve lost a child, I can also call myself a Vilomah which means “against a natural order” in Sanskrit. Maybe I’m an Exceptional Vilomah.

I’ve met many other Vilomahs in the grief groups I now frequent online.  I did attend a few grief support groups in person but the talk of afterlives and angels and signs from the other side were not helping. I spent most of my Kathleen’s life closely listening and watching her to figure out what she wanted or needed to communicate. Ghost communication seems pretty up-to-interpretation. I like to get my messages correct. Because of her autism, it was very important for Kathleen that things were right. I had enough trouble communicating with her in this dimension.  

In death, according to the religion I was raised in, we have perfect bodies. If this perfection includes a regular ole brain, then I would not know my daughter at all in death.  I’ll stick to my memories. You can live with a superior being who decides to right people after death. That just seems cruel to me.

Thankfully the internet is not yet run by Christian Nationalists so I found a secular grief group for parents. There may even be a secular parent grief group for parents of disabled kids, but I don’t need to go that far into the grief forest right now. It’s been helpful to hear the unmitigated trauma of others in these groups who had their children die after lengthy illnesses, right after birth, adult children who were missing and found dead, children who died in accidents, by suicide, and so many fentanyl deaths. There is a certain comfort in knowing I’m not that parent, whomever it may be on any particular day.

I’m still learning how to answer the question when strangers ask about my family. I usually say I have three kids even though only two are around. If I’m honest with myself, I never did know know to truly explain my disabled daughter to people anyway. People in the US kind of freak out about anything outside of the norm as it is. I have been met with more pats on the shoulder about her throughout her life than I’m comfortable with. Explaining her death is so much easier than explaining her life and the pat on the shoulder feels more comforting than it used to.

I miss my challenging, complicated, hysterically funny daughter every second of the day. I feel her loss and the miss the joy of trying to decipher her occasional social media posts. Seeing the endless google image searches on her phone, and her staff calls to ask me one of millions of possible questions that have come up over the years.  Recently her staff told me that she would sometimes eat an entire box of cereal then quickly wrap her garbage and take it to her trash dumpster to conceal the evidence. It made me laugh and laugh.  If she were still alive, I would be mad that Kathleen was eating so poorly…but now it’s simply a funny story.  

She left me with many fun memories and hours of videos that she took of herself. Sometimes in the back of a car, sometimes laying in her bed. Sometimes she hums in these videos, most times it’s just her looking back at herself like all people seem to do these days. For months I couldn’t watch them because it gutted me, but I can watch a bit now. I can look at the pictures of us over the years. So many memories. So many hotel swimming pools which was her favorite place to be.

As the holiday approaches, I don’t have to decorate her apartment which is something I may miss in the future but right now feels like a welcomed reprieve. I hear other Vilomahs express guilt anytime that they are feeling good. I don’t understand that feeling but I’m glad that I don’t have it. For now, I’m going to let all of my feelings, good and bad, happen to me and I’ll wait to see what the future brings for me without Kathleen.