Fear.

Recently, I wrote a piece for the blog, titled, “is my kid disabled”?

Four pages of introducing disabled Max to the world…

                ‘This is my son Max, and here is his list of challenges’

I would write for a while and then walk away with a block. Return, write, stop, stumped. Over and over. Something was just not right. The piece would not come together. I printed it and read it out loud, nothing. I could not put my finger on it; why was this piece haunting me before sharing it?

I wanted the piece to be ready for autism awareness month. Max hovers over this unique intersection where autism, attention deficit, and sensory processing meet. It’s as if his brain took a few attributes from each, swirled them together and produced the way he interprets the world. The same holds true for the various disorders and syndromes of his physical body. As I edited for the fiftieth time, I realized what I wrote was heartfelt and informative, but it read more like a persuasive essay. I was explaining to the world why my son’s story is worth telling. I was screaming for acknowledgement of my challenges as a mom.

Through some self-reflection I was able to recognize what it was that was preventing me from finishing and posting the piece.

It was fear and it was screaming at me through my own writing.

Fear of the known and fear of the unknown. Fear of vulnerability and fear of rejection. Fear of unworthiness and not enough love. Fear of asking for support and fear of not having enough. Fear of not being accepted, believed, understood.

I looked at the piece I wrote once more and after a long inhale and exhale, I deleted it. It was not what I wanted to say; it wasn’t what I wanted to feel. The truth is, I was afraid that this blog wouldn’t be enough with just my writing on its own; like I needed to explain myself and have more to prove the worthiness of what I write.

No one ever sat us down and told us what our challenges would be when Max was born. In almost nine years, no one really looked at his file and put together the totality of his health situation. On the one hand we have wonderful and caring providers that have done their very best not to scare us. On the other hand, we are two terrified parents who hoped to ride out the “gray area” for another hundred years and assumed “no news was good news”. I guess in my head, I imagined we would be sat down by a doctor, and they would diagnose Max “disabled” and then we would know. She would slide a pamphlet over my way that says, “everything you need to consider when you have a disabled child”.

Fear.

I knew fear had taken over when the question of whether or not Max was disabled was keeping me awake at night. As Max defies the odds and perseveres in astonishing ways, we want the world to see that he is thriving despite his challenges, rather than the challenges overshadowing his determination.

We are an ordinary family with an extraordinary kiddo. The ups and downs of our lives, how we operate and thrive are all intricate parts of our story. We are doing the best we can with what we have, right? At the end of the day, every day, I know that I was the best Mom for my kids that day because I showed up.  

My hope is that you choose to follow along and be in our community as we piece this all together. Together, we create love and eliminate fear.