I Wear the Mask Well

I am NOT a writer by nature. Well, never anything I have wanted others to read. My writing skills have never reached beyond the rambling of journals that are tucked far away from other’s eyes.

I have struggled lately with overwhelming emotions and adjustments to not only how Autism changed our lives but to the schedule and workload that follows it.

Most of my “breakdowns” happen in the quiet of night when I am alone, safe from judgement.

I know I shouldn’t care but the demand to defend my feelings, especially the unpopular negative feelings, has just worn on me.

I am supposed to celebrate my son’s Autism.

I am supposed to help others understand it and I am definitely not supposed to be heartbroken or angry EVER because “at least he is healthy” or “he isn’t sick or dying” .

I wear the mask well and I advocate for him EVERYWHERE and educate myself and others.

I research and share and explain and hold it together by day but at night I struggle.

Though it isn’t just always at night, sometimes the isolation and lonely feeling hits me like a truck just leveling me.

I wrote this on one of those days, in the middle of those feelings. It felt good to get it out!

I tucked it away, like one of those journals but I realized there has to be someone out there that needs to hear it. I decided to bravely share it with you.

There are days where the grief just washes over me like a giant wave, taking me under and leaving me gasping for air.

In those moments I find my mind racing, going to places I don’t want to visit. The places so deep and dark I’m afraid I’ll never crawl out.

I can feel myself spiraling down farther and farther into the dark and I have to catch myself. I can’t do that! It can’t consume me.

The worries and doubts flood in and I almost feel paralyzed by the fear.

Those are the moments it is hard to find joy, it is hard to see the progress and find hope or any positivity. The grief and the anger of the unknown just take over. I HATE those moments!

I feel helpless and broken.

I feel horrible for hating Autism, for hating a part of my sweet child. I feel guilt for being angry and jealous and sad.

I can’t share those thought or feelings though because they won’t understand. I see the looks, of even the well meaning friends and family. Their faces can’t lie.

Are they uncomfortable? Are they judging me? Do they pity me?

Do they leave me and sigh with relief it isn’t them? Am I ungrateful?

Am I horrible for feeling this way?

Do I talk about Autism too much? Am I too negative?

Why do I care about all of this? It is exhausting!

I hold those feelings close because I have to. I cry in the car alone after school drop off or in parking lot of the grocery store or the bank behind my sunglasses.

I cry at night after the house is dark and quite. That seems to be the time it hits me hardest.

Oh, those nights I spend pacing the house with my chest so heavy I can’t breath. It hurts so much, it feels like the pressure will kill me.

Those nights I sob so hard it takes my breath away and I don’t think I will have tears left to cry. I pray and plead for us to be ok. I ask for strength and guidance.

I let it all out so I can hold it together. No one can see the worry because “it will be ok”.

Well intentioned friends and family, even my husband will try to show support with positivity and hope.

They will say helpful things, wonderful things, supportive things, and sometimes stupid things. My GOD will they say stupid things!

There are days though I can’t see it, I can’t hear it or believe it. I don’t even have the energy to be angry or offended by those stupid things.

I know they are trying to help but sometimes you need to let that dark creep in. I am tired, not just physically.

I am mentally and emotionally, just so tired. It is a tired no amount of sleep will solve. Though I will get up everyday and I will smile and laugh and love my child so much it hurts.

I will fight for him and later beside him. I will take my moments and open those flood gates so I don’t burst.

I will celebrate each triumph and milestone and live in awe of him and his strength and resilience. A strength I envy.

“The Darkness” is a place I visit when I have to but I can’t live there.

My son is the most amazing person I have ever met. He has wisdom beyond his 6 years.

He greets the world with happiness I didn’t know could exist. His smile, his gorgeous smile lights up the world around him. A smile that seems to take over his whole body.

He teaches me everyday. Autism didn’t just happen to me or us, it happened to him.

He doesn’t know the sadness or fear. He doesn’t worry about the unknown or the future.

He takes everyday as it comes and inspires me to do that too. It is those smiles, laughs and hugs that remind me we will make it even through “The Darkness”.

He is my world!

Written by, Kayla DeSnyder

7 years ago after getting married my husband and I prayed for a child and our prayers were answered. We were blessed with our beautiful son and he is our one and only. We call our family “The Triangle” because it is the strongest shape. My dream growing up was to be a mother and a wife. When I am not taking care of my boys, I am baking. I am a pastry and culinary school graduate and recently have taken a break from my in home baking business to concentrate on advocacy for our son.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.