Hand to Hold's Official Blog: Written by Parents for Parents

Finding Comfort in the Edges

My son, finding a new edge.

As parents, our tendency is to protect our children and solve their problems – sometimes to a fault. Mothers, especially, have a keen sense of being able to predict what their children need, before the children know themselves, and race to provide whatever that need may be. For parents of special needs children this instinct is heightened.

When my son, Kai, was an infant I spent countless hours scouring the internet in search of whatever alternative treatments and therapies were out there to possibly make his life better. I felt like I had a small window of time to incorporate all of these therapies since infancy and toddlerhood are when the brain develops most quickly and easily. Many people have tremendous breakthroughs with various treatments, and their children take off and defy all of the various doctor prognoses. While we had some definite shifts and small breakthroughs in Kai’s development, the “leaps” have been few. My mid-western roots could not comprehend this phenomenon – doesn’t effort equal outcome? Apparently, not always.

It has taken a few years, but I have finally gotten to a place where I have embraced what IS, and can still look ahead to what could BE – without the anxiety, guilt and negative self-talk about what else I could possibly do. I did not realize that I had come to this place until I recently attended a Bikram Yoga class (aka hot yoga). I had done quite a bit of yoga in the past, so doing it in the heat shouldn’t be that different, right? Actually, it was quite different and rather intense. It was clear that Hot Yoga was not going to be checked off of my compulsive “to do” list. As I drove home, my clothes literally drenched with sweat, I made the connection and realized I had found a new edge for myself, and felt comfortable being there. It didn’t matter that the guy next to me (who was probably 30 years my senior) could do an amazing half-moon pose – it only mattered where I was at the moment.

I began reflecting on a myriad of experiences in my life, and how I met goals and overcame obstacles. My inclination as a first-born, type-A personality is to see an obstacle and head straight for it- pushing harder to conquer the goal. You learn quickly in yoga that this is not necessarily an advantageous attribute, and it can often work against you. And so it is with our children.

Through my journey with Kai, I have learned, as in hot yoga, that we are constantly finding new limitations within ourselves. These limitations are often overcome slowly, deliberately and with attention- just like with our children. Often the shifts are not quick, and when the shift happens you are not finished, the goal is not conquered, because there is always the next edge. And again you start, slowly and deliberately.

I realized, in this post-yoga moment, that I had embraced where we are on our path, and every step I took along the way brought me to the next step- nothing was for naught, no time wasted. Overcoming the next edge, is a very mental game we play with ourselves, but once we know that it does not have to be fast, we can embrace where we are- mind over matter.

Stephanie Goley About Stephanie Goley

Stephanie Goley (MA) is the mother of three, full-time stay-at-home mom, part-time educator and military spouse. Her oldest child, Kai (6) was born full-term, but experienced birth trauma causing significant brain damage. He spent 17 days in the NICU and is diagnosed with cerebral palsy, dystonia, cortical visual impairment and seizure disorder. He is non-verbal and non-ambulatory, relying on others for all his basic needs. Stephanie is interested in fitness and having fun adventures with her family. She is passionate about creating the best life possible for her son and seeking out alternative therapies to help develop his potential. You can find her on Facebook and her personal blog about Kai, written from his perspective.

Comments

  1. I’m new to this blog and this post opened my eyes(tear-filled eyes) to so much. I’m also a fellow yogi & I feel it helps me clear my head, but I will be visiting your blog for advice & maybe even sharing our story. Thank you, I really needed this today

    • Stephanie GoleyStephanie says:

      I’m so glad you were able to connect with this! I’d love to hear your story when you are ready. I often find there are many common threads in what we’ve all been through as special needs parents.

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