learning to live and love from a new perspective

Listening to the Joy

You came to me for advice. Your child has just received a diagnosis. And now your child and mine, they are travelling the same path. You smile up at me through your tears, and my heart is breaking. Breaking for the pain I know you are feeling. Breaking for the strength you are trying valiantly to muster, as you attempt to wipe away the tears before your child looks up from her game. You don’t want to answer the question, “Why are you crying, Mommy?” and neither do I.

Then you ask me the question that makes me feel both proud and guilty at the same time. “How do you do it?” you ask. “I’ve always admired the joy that you bring to your parenting. I feel like when I’m with my daughter, the tape is always playing in my head. The worry. The fears. The what-ifs. But when I look at you, you always seem to be in the moment.”

Wow. I didn’t see that coming. I remember so clearly being in your shoes… those first scary days and weeks… that I don’t remember that they aren’t my shoes anymore. How do I answer your question? How do I bolster your confidence without downplaying your very real worries? How do I empathize without making you feel more hopeless than you already do?

I wish I could remember what I actually said. Probably nothing too impressive. Here’s what I wish I had said. It’s taken years… months and days and hours… of struggle to get the tape playing in my brain under control. There is constant worry. Guilt about the past, anxiety about the present, and apprehension about the future. All of these things play in a loop in my head. However, at a certain point, it was pointed out to me that, while those feelings are still present, there are other feelings there as well. Joy, pride, adoration, love. I can choose to turn down the volume of the negative feelings, and turn up the volume of the others.

The anxiety, apprehension and worry serve a function. I push myself to get the next therapy my son needs. Find a different doctor, one who “gets it”. Persist in a conversation with my son’s teacher if there is something he needs that he is not getting. The worry is the motivator behind each of these actions.

After a year of physical therapy, my son took his first wobbly steps two months before his second birthday. The anxious voices clamored. “Why so late?” the voices demanded. “Will he ever run? Jump? Climb downstairs? Does he need longer therapy sessions? More intense?”

And then, I forced myself to take a breath. Turn down the volume on the worry. Turn up the volume on the other emotions. “Look at that, my boy is walking! Come here! You can do it! Walk to mommy! I’m so PROUD of you!!!!!!” The steps were small. They came so late. But, he was doing it… and I was proud, and joyful, and adoring, and so in love with my boy.

And for you my friend… I know you will get there. Your child has autism. Her life is going to be different from what you expected. She is going to need every once of fierce mommy protection that you can muster. But soon, you will have sat with these new emotions, these mountains of scary worries and seemingly insurmountable fears. Soon, you will be able to tell them, “Okay. I’ve heard you. I know you are here.” Then, you’ll be able to turn down the volume on the worry, and turn up the volume on the love, pride and joy again. I know you. You’ll do it, and you will be amazing.


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