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Loneliness and pieces of Joy

on May 23, 2011

Yesterday, I cried. In fact, I sobbed. Partly, the breakdown was due to being tired from an event the night before. It was also partly due to the fact that I had just gotten home from singing at church (which my son and husband could not attend, because we didn’t have someone to be with Alex that day), and then my husband immediately took off to work a side job to bring in some extra cash, but not before expressing the fact that he was irritated with the fact that it took me so long to get home.

There are times when the world feels very lonely for mommies with Autistic children. And so I cried. And my son, bless his little heart, came up and made a perfect sad face and said “Mommy sad, Mommy sad…I so sorry.” Then he began to cry & hit himself in the head, but wouldn’t come to me for comfort. He began to ask for Daddy over and over. I believe he felt the sadness and tension between his Daddy and me and wanted us home together, and possibly understood, on some level, that my sadness was the result of our unique situation (which may translate in his brain to “my fault”). Truth be told, we had not been home together all weekend, each taking time for our respectable side jobs. I had to calm down, for his sake. But I felt so incredibly alone, and the tears wouldn’t stop.

I called my own mother, because she is really good at diffusing situations and balancing me out. The phone rang and rang, but she finally picked up. I breathed a sigh of relief and said in a small, teary-eyed voice, “I need you to help me calm down.” To make a long story short, she did. But wow. I never considered the possibility that I’d have to curb my own personal emotions in order to help my son.

Don’t get me wrong, I’m a firm believer in the healthy expression of emotion, but apparently I have a lesson to learn when it comes to excessive emotion (to which I am prone) in front of my autistic child, who may be, inside that smart brain of his, thinking my sadness is his fault. I don’t ever want him to feel that way.

So I calmed down, for his sake, but my mood remained somewhat somber. When my husband came home, he apologized for his earlier actions that had seemed so cold to me. I accepted the apology of course, and thanked him for being humble enough to do that.

Later, I went to Alex’s room and sat in the glider chair we bought before he was born, and just rocked. I remembered holding him, and comforting him as a baby. I remember singing to him, and feeding him, and putting him in his crib when he fell asleep. Nowadays he doesn’t always like for me to sing. In fact, if I burst out into song (which is just in my nature), he will somtimes say “No!” until I stop. (And let me tell you, as a semi-professional singer, *OUCH* that hurts.)

Back in his room, I looked around at all the toys and gadgets and fun things we and others have bought him over the years that never get played with, along with the little areas of his room I have created for play time, and it made me sad all over again. My husband came into the room, finally, wondering where I had disappeared to. When he saw the tears streaming down my face, he leaned in to hold me.

At the end of it all, my husband said to me, “You’re amazing.” I answered, “I don’t feel amazing,” to which he replied “The great ones never do.”

I then looked at him and said, “It comes with a price.” He kissed my forehead and replied “I know.”

And then he left me to my thoughts.

It’s funny, I have wisdom, and strength, and a huge heart, and I plan on fighting for my son’s success and happiness every step of the way, but it’s still a lonely walk sometimes. I have 381 friends on Facebook, 400 church family members, 98 followers on Twitter, 14ish girlfriends from my side business, 4 or 5 besties from my past, 10 extended family members, 2 children, 1 husband and a loving God, who all surround me with support. But there are still times that I feel very alone in the world. You know what though? I bet Alex (my son) feels the same way sometimes.

Ah, but even as I write this the next day I am being rewarded with a precious little moment…I can hear Alex in his room, actually playing in the area I created for him underneath his loft bed. He is playing on the little old-school xylophone toy and has found matchbox cars I hid in a bin. He is also singing to himself while he plays. These are the little moments that count. These are the little achievements I cling to when things get hard. These little pieces of joy should be captured and and stored somewhere deep in our hearts to bring out when we need them the most.

Even though this path on the spectrum gets lonely, and we aren’t always happy, we can still have joy in our hearts. And that’s a lesson I hope to teach my son. Happiness is fleeting, but Joy stays with you, even through the hard times.


3 responses to “Loneliness and pieces of Joy

  1. Jacque says:

    “See the world as if for the first time; see it through the eyes of a child, and you will suddenly find that you are free.” Deepak Chopra

    Your baby sees things in ways that make us stop and learn new ways to see as well. And for this am I so grateful he is a part of my day! He has a beautiful soul, and is going to do great things mama! Thank you for sharing your story!

  2. Amazing sincerity! I would appreciate your permission to use in this composition, a part of Creative Fighting of Autism:
    Thank you. I would appreciate your reply:

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