Will This be Our Forever?

My son, I’m waiting to read you your nightly story, like I do every night, like I have for years.

You still play with Thomas The Train and watch childlike videos.

You still need to be bathed just like a young child.

I wonder if I’ll do this forever or if one day you’ll grow up.

You see, you are actually all grown up physically. You’re a grown up 20-year old man but cognitively…well, that’s a different story.

I know some things will change, but what I don’t know is what things.

Will I always need to prompt you to dry yourself forever or remind you to put your robe on when it’s chilly or that your clothes are on backwards?

Will I read children’s books to you forever?

Will I tell you when you have food on your face forever or that you can’t go to the mailbox without shoes?

Will you talk about videos primarily, forever?

Will we be side by side snuggled under the covers in your bed when we’re both old reading bedtime stories and talking about the same things we always talk about forever?

I don’t have these answers. I have a son whose future is unknown — I mean really unknown.

Unlike his brother…

I know he’ll graduate college, get married and have children all those things but you your future is seemingly unknown.

It’s all the emotions tied up and then the exhaustion that comes with all the overthinking everything. It seems to never end.

Last night I heard you get up again and I listened making sure you were safe. I should have gotten up again but I was tired. I laid there listening and thinking about how long have we done this dance?

How long is this song?

I wish it would end. I’m weary.

I get sad sometimes because I want so much for you but I really don’t know what your future holds or how far you’ll go.

In the end, I just want you to know you’re loved and hope you’re ultimately happy and fulfilled with your life in some way.

Dear God, I truly truly hope that for you.

You would be an amazing parent. I wish I could tell you so or that I knew you knew that. Now, I know that’s quite impossible, but in the few moments where you are so very crystal clear and the way you look at me, I see you.

I see all of you without the debilitating autism.

I see how you would be amazing as a dad then just like that you disappear once again in a sea of fog and sometimes anxiety.

I see your entire soul even if you’re unaware. I’ve always seen you and I feel just how intense your emotions are.

I see how hard you work every single day to make good choices and remain calm. I know it’s hard, I see that. I wish the hard would melt away. I so wish that for you my son.

Our life has changed so much in the last year. I now have morning coffee listening to you do online learning. I marvel at what you know and cry at what I thought you knew but don’t.

We learn together now and I never thought I’d be good at teaching you but we’re figuring it out. Our days are full of learning, modeling and prompting and honestly I’m so proud at how hard you work.

Every one of our days are the same yet different.

Maybe you will never really want to do things totally independent. Maybe you’ll always need to be prompted.

I heard you spell my name today and the school you used to attend…I was amazed. And as I listened, I had so many emotions I almost couldn’t contain myself.

How much more do you know? I do wish you could find the words to tell me everything.

I remember years ago when I thought I couldn’t care for you, it was too hard and I didn’t know what you needed. We drove you to a treatment center all your bags packed.

I was lost and afraid.

I was so afraid of the future and how it would look. I didn’t trust that maybe our future would be different from others and it frightened me. I didn’t understand autism at first but now I do. I really do.

It scares me to think if we had let you go where you would be today.

I’m thankful that didn’t happen and you remain with us to love and care for the way you need us to. We understand your needs, but boy did it take me a while to figure it out.

I don’t care if this is our forever. There’s nowhere else I’d rather be.

You are my life’s work and I am so proud.

“Like a snowflake … you are uniquely different and our forever will be only ours.”

Written by, Leasa Hoogerwerf

My name is Leasa.  I am the mom of Cody who is 17 years old and diagnosed with severe autism.  We were told to institutionalize him early on and decided to do the complete opposite keep him with us, love him and work with him nonstop.  Cody spoke his very first word at 9 years old.  I started Cody Speaks to document our journey and share with others hope and encouragement.

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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.