94: Softness in the Vast Blue Sky

94: Softness in the Vast Blue Sky

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Softness in the Vast Blue Sky

Underneath the hardness there is fear

Underneath the fear there is sadness

In the sadness there is softness

In the softness is the vast blue sky

~Author Unknown

When my son James was a baby, he was so beautiful. Everything seemed possible. Over time, it was clear to everyone but me that something was different about him, something to be concerned about. But I saw only magical uniqueness. Even when he was diagnosed with autism, I failed to acknowledge or to accept the loss of my dreams. I failed to see him for, yes, the truly magically unique child he was.

After his diagnosis, I was suddenly in a new world, a world I did not want to be in. A world I didn’t know how to navigate. A world I only wanted to escape from. I denied the impact on my heart and on my life, and set out to force happy normalcy on us all. The alternative was simply more than I could bear.

There were lots of people to meet that I never would have crossed paths with. Experts. Parents. Doctors. Teachers. Specialists. Support groups. I was flooded with way too much information. I couldn’t begin to sort it out. I was numb. No time for feelings. I had to function. I was alone with a son I loved who had a problem. I had to fix the problem. That is what I knew how to do and I did it very well. Fix problems. Find a solution. Make everything all right.

Someone said I should talk to Sherry, a mom/expert. Sort of the mother superior for all the novitiate moms. I took James to her house. She was so friendly. I thought she was happy because she knew how to make this all go away. She was going to share the secret cure with me. She had this great big smile on her face as she exclaimed, “I love autism!” Wow, I thought, will I ever love autism? I was pretty sure I wouldn’t.

Many families look forward to the summer. Family vacations. Trips to the beach. Sports. Picnics. Cooking out in the back yard. Enjoying time with the kids. I don’t remember it that way. Summers were a stressful time. Without the structure of school, James’s autistic behavior deteriorated. He had frequent tantrums. He did not like to do what other kids enjoyed, so he did not have friends. He did not like to do what families like to do together, so family vacations were not something I looked forward to. I saw summers as opportunities to focus on the autism therapy du jour — auditory training, sensory integration, behavior modification, diet changes, homeopathic treatments, and on and on. With each summer, he grew older and my hope for a cure grew more desperate.

One spring I was talking to the child psychologist who worked with James. I was going over several options for the summer. One option I dismissed quickly by saying, “This one would just be fun.” The doctor leaned forward until he was sure I was paying attention and said slowly and deliberately, “Fun . . . is . . . good.”

I guess all those years of training paid off for him, because that was one of the smartest things I ever heard. I think that is when the healing began. When I realized that life in all its uncontrollable messiness held the promise of joy along with pain. That my child was like any other child — he wanted to be safe and happy, to learn and grow and have fun. That I was like any other mother — loving my child with my whole being, wanting to shield him from harm, wanting to prepare him for a life beyond me.

James himself helped me. One day, as he was looking at himself in the mirror, I heard him shout, “It’s great to be James!” What more could a mother ask? I learned to delight in him the way he delighted in himself.

Is there any mother whose heart has not been broken by her children? By loving them so much, by worrying about them, by losing them, by finding them again?

One mom I know has a child with leukemia. Another has a child on drugs. Another’s child died in a fire. A friend’s daughter has morphed into bridezilla. Another has a teenager who is, well, a teenager. I have a son with autism.

What were we thinking when we had these kids? I have never regretted for a moment having children, but I have marveled sometimes that I don’t. Surely I would regret anything else in my life that had caused me such heartache. Would any of us, if we really knew what we were getting ourselves into, have knowingly walked into this soul pain?

Amazingly, the answer, I think, is yes. There will always be a raw tenderness in my heart for James, a place sensitive to touch. A place of quiet grieving. And that’s okay. I breathe into the softness of it, trusting in the basic goodness of the universe, the perfection of it all, the sunny brightness of the vast blue sky.

~Galen Pearl

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