Holding On To Your Joie De Vivre When Living The Special Needs Life

I admit it. I lost it. I had great joy and enthusiasm for life. I liked to try new things. I enjoyed experiencing different cultures and languages (for which I have no natural ability but have a secret fantasy that I can speak fifty of, fluently). I liked to laugh. I played music but didn’t call myself a musician and I made art but didn’t call myself an artist. Not having the labels was very freeing. I created and didn’t worry about the end product because, hey, I was no artist/musician, so what did you expect? I made crafts. I sang songs in my fabulous, off-key voice. And, I played.

Then, a couple of things happened that made it feel like the huge hand of God reached down from the sky and smacked me so hard across the face that I fell down (and, no, I don’t think that’s what happened and, no, I’m not mad at God. I’m just saying, it felt that huge). My mother was diagnosed with Alzheimer’s disease and my son was diagnosed with special needs. At almost the same time. If you want to read about that, here’s a link to that post:

But that’s not what I want to talk about here. What I want to talk about is coming back from it. I have read and heard many times that it can take a whole year or two to recover from traumatic events.

Ya’ll, it took me five. Five years. And I would still say that I am in the process of recovering. But it’s finally getting significantly better.

Here’s what I know about myself. I have anxiety disorder. I am also very sensitive. I experience both pleasure and pain VERY strongly. I am highly empathetic and sympathetic. And, in a lot of ways, I didn’t WANT to recover. Because it meant letting go of my mother when she passed away. And I was holding on SO TIGHT. She was my best friend. And somehow, becoming OK with losing her seemed wrong to me.

It was similar with my son being diagnosed with special needs. I was holding on TIGHTLY to all kinds of preconceived notions about what having a child should mean and being a mother should mean. And if I let go, and let it be, what did it say about me? I wasn’t even worried about what other people thought about me at this point. I was worried about what I thought of myself. What did it say about me if I let go of what I thought my son should have been and should still become? Less so, but still significant, I didn’t want to let go of the fact that my son would not progress at the same rate as his peers. I then somehow became OK with the diagnoses, but I was hellbent on making his progress swift.

Can you say J O Y K I L L E R???????

I stopped laughing. I stopped smiling. I was quick to criticize. I had next to no patience with people who were not onboard my with caregiving agenda. I had less patience than I should have had with people who WERE on board with my caregiving agenda. I stopped taking care of myself. I worked and I cared for my mother and I cared for my son and I cared for the rest of my family, to varying degrees of success and non-success. And I caught a little sleep. And this went on repeat. For a very, very long time.

And here’s the thing. When my mother ended up dying and my son ended up in Early Childhood Intervention and after we were homeless for a few months (that’s a whole other post) and after my husband got a very severe illness that required endless months of struggle and vomiting and hospitalization and occupying the couch and after we moved YET AGAIN, after all of that was over, guess what?

My joy did not return.

Joie De Vivre. The exuberant enjoyment of life. Nowhere to be found.

I couldn’t recover. I realized that I wasn’t coming back. Not the old me. And a new, different joyful me was not emerging. I was stuck.

I WAS STUCK.

Being stuck sucks.

I started to realize that it wasn’t getting any better. I was tired of not feeling happy. And I kept thinking, if happiness would just come my way, I could feel it again. I would hold onto it tightly, wrap my hand around it, close my fist and just… hang… on.

And it took a really, really long time of it not working before I figured out why. A few reasons why.

The first is that I have discovered that the harder you close your fist around happiness, the faster it dissolves. If you can imagine a wish flower (ragweed, but I always called it a wish flower because you wish and then blow), it sits there, on its stem, beautifully rounded. It is something that you happen upon. And you can enjoy its presence, pluck it and hold it in your hand. But if you decide to keep it and you wrap your hand around it and close it in a tight fist, what happens? It changes. It becomes crushed. It is no longer what you were trying so hard to hold onto. Like the wish flower, happiness IS something that you can stumble upon, no question. And enjoy for a bit. And then you have to let it go.

You can also go searching for other wish flowers. And you may or may not be able to find them. Sometimes you will and sometimes you won’t.

I liken this to things that make me happy, that life presents, that are beyond my control.

My problem was that I was waiting for life to present daily happiness. And I couldn’t find it. I couldn’t find the wish flowers.

Happiness and things that bring me pleasure cannot always be in the control of other people and outside events. Which brings me to the next reason why I couldn’t find happiness anymore. I stopped creating it. I was so exhausted and stressed out that I lost sight of the simplest type of any self care. When was the last time you scheduled not only self care into your day but something that brings you joy? When this thought finally entered my brain, I couldn’t actually remember. I had no idea when the last time was when I made time to play music or paint or go for a walk or eat something healthy. For myself. By myself. I was too busy trying to manage the life apocalypse I was experiencing and afterwards, I simply forgot how.

If I wanted to continue using the example of the wish flower, I would say that in addition to finding them, you can also plant them. This way you don’t just get one when you stumble upon them. You also get one where you planted it.

Think about this – if a friend calls you up and offers to meet up at your favorite coffeehouse for coffee and a pastry, the joyful event was presented to you. If you decide that today you are going to spend time at the coffeehouse you love, have a hot drink and a treat and read a book that you are excited about reading, you have created some happiness and infused it into your day. It seems like a very small distinction but it’s not. It’s huge. Because in the first example, you have no control over the offer or the plan, it just comes to you (or not). In the second example, it’s all you. You CREATE an opportunity for a happy moment in your day.

You need both. You need to look for unplanned things that you can take joy in and you need to plan for your joy as well.

And, finally, the last thing that I figured out is that you have to not only allow happiness to flow in, you also have to allow it to flow away from you. It has to come and go. You can’t hold onto it. Remember the wish flower? You can’t hold onto the one in your hand forever, so you have to let it go. That’s OK, though, because there will always be a new one in your future.

So, to recap, you are not powerless if you are not able to feel joy right now like you once were. Getting a special needs diagnosis for your child is a huge life event. It’s hard and it can be painful. Even more intensely, when this is combined with other harsh life events, it can feel like you will never experience happiness and joy again.

It’s not true. You will.

When you are ready to feel joie de vivre, exuberant enjoyment of life, again, you will. But if you get stuck, remember that being stuck is not forever. Remember to create joyful moments for yourself. Be open to unexpected happy moments that present themselves to you. And don’t tighten your fist so hard around a happy moment that it disintegrates.

More happiness is on its way.

How do you create more joy in your life? Please share in the comments below.