By Rachel Pastiloff
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.
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.
I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.
Rachel Pastiloff is a native of Philadelphia/South Jersey. After years of living on the West Coast, she transplanted to Atlanta, Georgia from Berkeley, Ca in 2006. Rachel is a mother with 2 young boys, ages 5 and 7 years old.. In 2009 Rachel’s oldest was diagnosed with a rare genetic disorder called Prader Willi Syndrome. The following year her son was diagnosed again with Autism. Both of these events would help shift the direction of Rachel’s life. She began her path with health and wellness to create a better life for her family. It then became her passion. Rachel became a certified yoga teacher in 2012 and is a graduate of The Institute for Integrative Nutrition as a Health and Wellness Coach. A life long lover of food and cooking, Rachel helps her clients get back in the kitchen and enjoy it. She is helping people have a new relationship with not only food, but also their personal health and wellness. Her work can be seen here on the site and on Positively Positive. Reach her at firstname.lastname@example.org to work with her or visit her site.
Sisters, Rachel thank you so deeply for writing this and Jennifer thank you so dearly for sharing it.
As a very single parent, I relate all too well to my own version of intense parenting emotions. I often think about you Rachel and wonder how you get through the motherhood struggles. I have been trying to bridge the gap of “acceptance” in my own life and reading this has been a great blessing indeed. Thank you, thank you for posting. Love to both of you.
Wow, Rachel, so beautiful, honest and raw. I love that you don’t sugar coat your life or your feelings. You are courageous and inspirational. Thank you for sharing!
Thank you for sharing this Jen.
Rachel, thank you for your honesty… I am a special needs parent too. My daughter is inable to walk because she has cerebral palsy. I find it an everyday challenge to provide, care and raise her. I asked questions about why she can’t be ‘normal’ too. That she deserves that, like every other kid her age. And my life, I struggle that I have to provide for her after my husband passed. But I believe that there’s a reason why we live this kind of life. Whatever it is, we live our lives open and embrace what we now have and just make the most of this
Am so moved ,so proud of parents who are managing these blocks , there is areason He knows , its a process of learning, easy to say kudos to you all . May God give you n bless with courage ,, in Inďìa we call it Karma an account you have to settle , prayer is a energiser, please pray Om Shanti, give me peace lord, you have the answers i dont, .go on reciting with faith n devotion.