I am constantly navigating through a crazy maze of trials in my life. Always trying to figure out if what is now is what it’s supposed to be. I constantly examine this concept with my children and myself.
Last Tuesday was an especially difficult day. I struggled through the day, and my kids weren’t even home from school yet. Once my littles arrived home, things went from hard to climbing Mt. Everest hard. Blaise, my sweet boy who has Prader Willi Syndrome and Autism, was in a state of destruction. As dinner approached, I asked my sweet angel where his glasses where. Very nonchalantly, he responded that they were broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses broken, twisted and shattered in little pieces. I found myself cracking into those same little pieces.
I lost my patience and started yelling. I hate that part of me that comes out when I crack.
I screamed at him, “Why, Why, Why?”
He never answered. He didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue; they are at the surface; they are like the skin; they are just the part you see. The real issue was exploding inside.
Why can’t my son understand me? Why can’t my son be “normal?” Why doesn’t my son’s brain work?
There it is: the guts of it all. It’s the insides coming out, the organs and the blood.
Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive. That it’s tough but working.
In reality, it was all still there under the surface, inside a pressure cooker about to explode.
I found myself crying after my kids went to sleep that night. I cried for myself. I cried for the stress that his syndrome can create in me, but mostly, I cried for him. I cried for what I thought was missing. I was quiet after I let it all out; I was quiet all through the days that followed. Something had opened up, and I finally had to face it and deal.
I had to accept what is.
Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failure or lack of in his life. He accepts things and does so with a smile.
I am working on accepting “the what is” now. I added into my a-ha moment that I can accept what is now and trust that things may look different in the future.
I have to let go of what I think it is “supposed” to look like in my life and in my kids’ lives.
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As the parent of a special needs child, I tend to be on a roller coaster of emotions. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgment to what I think the picture of my child’s life should be.
Rachel Pastiloff is an author, yoga teacher, amateur chef, special needs advocate, and mother living in Atlanta, GA with her husband and two sons. In 2009, Rachel’s oldest son was diagnosed with a rare genetic disorder called Prader-Willi Syndrome, with a diagnosis of autism to follow. The diagnosis was traumatic and forever altered the course of her life. Rachel has made it her mission to educate the world about children who have special needs and their parents and caregivers. For more on Rachel visit her blog or follow her on Facebook and Twitter.
Rachel will be assisting her sister Jennifer Pastiloff (fellow Positively Positive contributor) at her Manifestation Writing/Yoga retreat at Kripalu Center in Massachusetts in February 2014.