I'm Starting to Forget...
There is no magic pill or statement I can give or say that will change this.
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I’m starting to forget.
The other day, over coffee, I chatted with a mom whose daughter was just diagnosed with autism and a few other things. Epilepsy. Language disorder. The list far too long for a little girl who wears a pink tutu and pigtails.
This mom was looking to me to help her. To give her the answers and the secrets. To fill her up with hope and take away the sting.
I mostly just listened. Because that is what I needed 8 years ago when my own son was diagnosed.
There is no magic pill or statement I can give or say that will change this. It just…is.
As she spoke about her fight, internally and externally, I was transported back to those early days. Before we really, really knew. The denial. Then making the appointment. The ‘am I doing enough?’ The strain it had on my marriage. My career. My relationships. The way I parented my other son.
The waiting.
Then getting the folder at his diagnostic appointment. How it was slid across the table as if it held the secrets to our future.
Autism. Level 3. Severe. Nonspeaking.
The good luck. The drive home and feeling so different than just hours before. Feeling utterly alone. Like we had the only child with this diagnosis.
And finally, the fight of my life. The one I had to shield up for every single day. It was invisible to everyone else. But I was at war.
As this new, tenderhearted mama spoke about trying to find resources and supports, about trying to convince herself of all the realities that she could see but not accept…not yet….
I realized I am starting to forget. Because I’ve taken my armor off. I’ve hung it up.
The ache. The longing. The hoping and wondering. I can suppress it now. Because it is replaced with the only thing stronger.
Joy. My son is happy. And he is exactly who he is supposed to be.
He is Cooper. We have found his place in this world. Carved out within our family and community.
I searched for 11 years for something. Help. Hope. Easy. Typical even. That magic pill and statement that this mom needed from me.
What I should have been searching for was joy. His joy. And now, over time, it’s turned to gratitude.
How lucky am I to have this child in my life who shows me the way?
I listened as she spoke for hours. And then I told her how wonderful it will be when she gets through this hard part. The hard part that will drag on for years and turn her inside out. But she will make it through and eventually she will become the person and mother she was meant to be all along.
The person after the diagnosis.
She wasn’t ready to hear all the yet. I get it. I wasn’t for years either. And there is no rushing. It’s a journey. One that she needs to walk alone. One that deserves grace.
As I pulled into my driveway after our chat, I saw a dozen kids playing football in the yard across the street. All ages. Boys and girls. Like a scene out of a 1950’s neighborhood.
Then the little girl yelling, ‘can Sawyer play?’
As I stood there watching, I saw the fifth grader who looks exactly like Cooper. They could be twins. He was running and shouting and playing.
And for a second, I remembered. The sting of what if. Like a paper cut. The tears flooded my eyes fast. What if.
What if he played with other kids? What if he could be outside alone? What if he could speak?
Death by a thousand papercuts. That’s what it felt like for an instant.
I am starting to forget. But I can still go back sometimes. To the other world. The place I thought we’d be.
I shut the garage door and went inside.
Cooper was waiting for me. Like he always is when I leave the house. Waiting for me to come home.
I engulfed him in the biggest bear hug and smiled at his backwards shirt. Hand in hand he brought me to the computer to show me the book he wants for his birthday. An old train guide. The one we already have a dozen copies of. He wants one more.
And he giggled when I reminded him, he has weeks to wait until his birthday. I know he will ask me a hundred more times today. And that’s ok. I’m happy to answer.
I let that smile of his sooth the sting. I am covered in those paper cuts I think. Maybe all parents are. I don’t know. They are invisible to the eye. Scarred over even. They won’t let me fully forget though. My new armor.
Let the joy of a happy, beautiful life carry you through. And the gratitude that we get to be a part of something so special dull the sting.
The folder was blue. I still have it, in a drawer, by my bedside. It looked so much more intimidating 10 years ago. Gosh, the power I thought it had.
Love, Kate
Thank you all so much for being here. I hope my words give you hope, help you feel seen, and educate you.
There are still two days left to grab a t-shirt, hoodie, or water bottle from our merchandise store. There are oodles of sizes, colors, and styles and all will be delivered before Christmas.
Thank you for your brave. It helps so many people. Cooper’s legacy is to light the path for others, to give hope through his mother’s wisdom and vulnerability and willingness to embrace a different reality. And the joy! There is no denying that beautiful joy.
Yes, I have grown to forget too. I used to think that it was just my body protecting me from the past feelings of pain and hurt and heartache for what I perceived as damaging but I know as you said that I just focus on the joy the love the smazingness of what my kiddo does and realized that all the things she can do is far greater than what she can’t do! And my favorite quote “being normal is vastly overrated”