I recently read a beautiful blog post that I wish to share with you today.
It’s called The Porcelain Light of Promise by author Jason Hague, and you can read it in its entirety on his blog here:
I wanted to share because Jason, author and Autism Dad, masterfully put into words a day inside my own head. A day filled with a million “What-ifs”.
Recently, Jason shared a big breakthrough his son had. His son is learning how to text, and it has opened up a whole new world of communication between him and his boy. It has given him a better picture of his son’s world. It is a whole new connection.
But, as the likes and comments came pouring in (now over 34 Thousand and counting), Jason found himself getting anxious. Anxiety is the ever-present companion of the Special Needs Parent.
What if, after all of this attention, his son regresses?
What if this mini-miracle really has no impact on how his son’s life will play out?
What if?
I wonder the same every day.
I wonder if I should share little stories about his progress, knowing that regression is just a breath away.
I wonder all the time what my son’s life will be. I wonder if he will have friends or a family of his own. I wonder if he will be self-sufficient enough to live in a group home, or if living with us/family is all I should hope for. I wonder if he will find something that brings him passion and joy to do, or if he will spend his life essentially being baby-sat. I wonder if the world will ever see the amazing person that I see under a disability that many people like to ignore because it messes with their own comfort.
What if?
In his post, Jason brings up an even scarier what-if:
What if things go well?
Ashley, isn’t that good and exciting, not scary?
Well, it is, but it isn’t.
As Hague puts so perfectly: “Good news is a fragile thing. Promise is porcelain, best if packed in bubble wrap and tissue paper…”
Good news and hope are rare and delicate in our world. What is built up over years can be shattered in an instant. So sometimes it is easier not to hope in the first place.
It is easier to bubble-wrap my porcelain heart.
I’m not afraid of a long, dark road. No, it’s the brightness that haunts me; the porcelain light of promise. Because I have seen how easily hope shatters.
Jason Hague
Thank God, I was hard-wired an eternal optimist. Despite the over-generous doses of realism my life provides, despite the ever-present cloud of mental illness I’ve inherited, I remain a dreamer.
What if?
What if living with us or his brother is far too small of a future? What if a group home is too small? What if he could live in assisted living, or beyond?
What if all of his manufactured friendships through school and family acquaintances don’t disappear overnight once he is out of sight and out of mind? What if some people stick around? What if he makes a best friend? Or finds love?
What if these obsessions he has now turn into expertise? What if he turns them into a job and a career that he loves?
What if he isn’t ignored? What if he is appreciated? Valued? Sought after for his detailed knowledge or unique and creative way of looking at the world?
It’s a good day when I can live in these what-ifs.
There is a very quotable bit of poetry that finds itself on social media over and over again: “What if I fall?” Oh, but my darling, “What if you fly?”
“There is freedom waiting for you, on the breezes of the sky. And you ask, “What if I fall?” Oh, but my darling, “What if you fly?”
Erin Hanson
I live my life here; between falling into a trembling ball wracked by despair, and soaring with the potential and hope of what is yet to come.
Both are equally painful.
Can I say that again for emphasis? Both are equally painful.
When you tell a Special Needs Parent to “look on the bright side,” or “have faith,” you are asking something of them that is very difficult and very painful. Please be patient. Please be kind.
Despair and hope. My poor mother’s heart can barely contain either.
Yet, when I am able to make a choice, I chose hope. I choose potential. I choose beauty.
Choosing hope sets me up for disappointment. I know that. But choosing despair would be nothing more than living in the disappointment constantly and prematurely.
So I chose hope.
Whatever you are going through today, my prayer is that you can chose hope too.
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Ashley Lilley 
Thank you for sharing your perspective of being a parent with a child who has autism. You have helped open my heart to understanding what you have/and are going through.
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