My Hidden Grief

So, yesterday was a low point in the life of a mom. For those of you with typical kids, take pause, and stop for a minute to read this.

I promise you, by the end of this, you will be more thankful for having healthy children.

Let me first preface this by saying, I don’t journal. I don’t have a diary, and I don’t write about my journey everyday.

I don’t blog, though, I have thought about it.

This is my only outlet to let go and process when my soul gets weary, and my mind is fogged with the reality of raising a child with Autism.

We have also been blessed with the wonderful added bonus of OCD, anxiety disorder, and emotional dysregulation.

So, that being said, if you want to only read about puffy clouds and roses, and look at memes of puppies and kittens, you need to scroll right past this post.

If you are my friend, and you would like a peek under the tent, so to speak, sit down and walk with me a little in this journey.

I have always said that you don’t grieve the diagnosis of your child’s disability in one sitting. You grieve it over time, in fits and starts.

Months, maybe even a year can go by without getting to feel the deep despair and sinking feeling of sadness for your child.

God bless that time in between. Because it can steal you for what is to come.

In November, Russ and I finalized the process of gaining guardianship and conservatorship for Ben, for when he turns 18.

In a nutshell, that basically means that we have the right to make all decisions for him. We have access to make decisions for his IEP and the ability to make medical decisions for him, etc., etc.

This is critical as a parent for a child with a disability.

For those of you with typical kids, once they turn 18, you no longer have access to make decisions for them. Your young adult has to grant you access, or they can deny you access to their grades, medical information, it goes on and on.

So we both knew the importance of this. We knew we will have Ben with us in some capacity, for the rest of our lives, and we have to have the ability to make decisions for him.

It is an involved process, which basically ends with you attending court, and a judge signs off on your guardianship for your young adult. I was prepared for this.

I was prepared for the chunk of money it took to make this happen. The forms that Ben’s doctors needed to fill out, the guardian ad litem that was assigned to Ben to tell him his rights.

What I was not prepared for, was what it stripped away from my son.

Yesterday I opened a letter. From the DMV. Addressed to Ben.

It basically stated that Ben’s access to a driver’s license has been suspended, due to the court decision and our guardianship of him.

I knew this was coming. Ben cannot drive a vehicle.

His anxiety makes it almost impossible for us to predict how he would handle any situation in a car, behind the wheel. We knew that this needed to be done.

But…. seeing it on paper. It broke me.

Here’s the thing. Ben can’t drive. But deep down inside, there is still a hope, a belief, that he may be able to someday. And this paper, this document… it makes it so final.

He won’t be able to drive to a job (if he acquires one). He won’t be able to hop in his car, and drive to Chick Fil A. He won’t be able to take a girl on a date, or go with his friends to the movies. The hardest part of all of this…. he wants to do all those things. This.

This is what breaks my heart.

So, yesterday, I pushed through. I dealt with all the day to day end of day stuff; dinner, dishes, taking out the trash.

When the house finally got quiet, I took that letter to my room. And I cried. And cried.

The grief washed over me like a long lost friend coming back into my life after being on a short vacation away. But this is no friend that I want or need in my life.

He is back, though, with his black wall of sadness, taking my hand and pushing me back into the darkness. And I go with him.

We walk together through the dark and he holds my hand with his black, icy grip, while I meekly follow along.

He stands over me, wrapping his shadow around me while I sit on my bed and tears pour from my eyes.

And then… he is gone. I push myself back up off the bed and go find Russ.

Russ holds me and tells me that this is not final, that the document states he could gain access to a license someday (which would involve another court order and medical clearance from a doctor).

I know all this. It doesn’t take away the pain.

It doesn’t make the reality any less sharp.

It is rational and reasonable thinking. But at that moment, I just don’t want to be reasonable. I want to crawl into my closet and not come out.

I will not, however, crawl into my closet. I will wipe my tears, and file that letter in the binder I keep for all Ben’s important documents.

I will shove that damn binder back in it’s hole in my shelf and I will go watch Housewives of Orange County on Bravo.

I will engage in some mindless activity so that I can just not feel for at least thirty minutes out of the day.

The point of all this is to say. If you never have to make these decisions for your child, count yourself lucky.

Go find your child, give them a hug, text them you love them, write them a letter or just bask in the happiness that your children will grow up, move on, and build lives of complete independence…all on their own.

And by God, bask in that! Be happy! Stop wallowing in self pity that your kids are out of the house.

They can drive, they can vote, they can go out and fail and pick themselves up, and succeed or fail again. They have the opportunity to live a full complete life that my son will not have.

Yes, he will have a great life, but not the life that Russ or I had once envisioned for him. I will never know what an empty nest feels like.

I am still struggling with how that makes me feel.

Sometimes I am sad, and other times I happy, because Ben is truly a joy to be with most days. I will never be lonely. But I worry what will happen after I am no longer on this earth.

I am sad to say there have been moments, dark moments, where I pray that he passes before me. Then I can leave this life worrying for him no more.

I guess the take away from this rather lengthy post is no parent should ever have to make those kind of decisions for their child. But, the reality is there are those of us out there that unfortunately, have to do this.

We have to watch our child suffer from illness, disease, mental incapacity, physical disability… and we have to make decisions that may or may not alter the course of their life. And that sucks.

And when I says sucks, I am using the Disney terminology, not the word I really want to say. But we do it. Because we have to. Because we have no choice. We warrior on.

If you are reading this, and your child is well and healthy and mentally stable, count your blessings.

Written by, Beth Stockton

My name is Beth Stockton, I am the mother of Ben, who recently turned 18 and has Autism.  We have been on this journey for 15 years, and I can tell you it comes with high highs and very low lows.

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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.