The Ideal Life: Finding Peace in the Unplanned

It’s been a minute since I wrote a blog - I am always grateful if you take a minute to read and let me know your thoughts 

It is very hard to change the ideal you have in your head of what life should look like. For me this has always been one of the hardest things of raising Dylan- a 23 year old individual with autism, ocd, adhd and a seizure disorder. I had a picture of what life with kids would look like- I had a picture of what Dylan would be like. From the minute I found out I was having a boy these images started. I’ve written before about life not being perfect- it never is. But yet we build that perfect ideal up in our heads. And my Dylan was perfect- such an angel face with blonde hair and blue eyes. I just knew he would be tall ( I mean look at his dad) and strong and most definitely an athlete. I made up a song when he was a baby I sang to him about being captain of the football team and star basketball player- why did I think that would matter? I thought of what a great boy mom I would be- the mom that all his friends loved. As the years went by from when I first learned Dylan had Autism I still struggled with all of this. I always thought it would get better the next year or the next season or with age. I lived in a neighborhood filled with kids Dylan’s age- every day it was a reminder of what I didn’t have. They ran around in groups laughing and playing ball and walking to the bus together- often Dylan watched them out the front window- the window that was permanently locked so he didn’t escape inside my perfect house we were locked in. I think it’s worth saying that I was jealous my son wasn’t typical and i felt sorry for myself. I wanted what others had- and I ached for Dylan. I wanted him to have friends and be invited to parties- I wanted him to have a girlfriend and learn to drive and go to college.  

But you know what? Those were my ideals- those were the things I had in my head about how life was supposed to go. Just like so many people I didn’t understand autism. When that unemotional psychiatrist said that word to me when Dylan was 2 it was the first time it entered my life- I didn’t want to have to know everything about it. This wasn’t supposed to be my life. 

I used to spend my days waiting for things to change with Dylan- hoping it would get better with age or maybe he would outgrow all of this. How could he still be not toilet trained, still kicking holes in the walls, still running away and on and on. I always tried to do the things as a family that I thought we should- and that I wanted. Kevin often said to me do you think Dylan wants to do that or do you want him to want to do that?  

I think the truth is that I don’t know exactly what Dylan wants- he can communicate his basic needs to me- he’s hungry or tired or sad. His communication skills aren’t there for more than that. He can’t explain how he feels to me. My nights when I can’t sleep are filled with worry- is Dylan happy? Who loves him like I do? When I can’t see him for days is he sad? Does anyone hug him? Is he happy?  

Dylan won’t ever have a girlfriend, wife or any significant other- he won’t have a family. There won’t be a wedding to plan or babies to spoil. I won’t get to be a mother in law to his wife or plan a beach vacation with his family. I could go on and on but you get the point- my dreams for Dylan were shattered with this autism part of his life.  

But my Dylan is the light in this often dark world. He is childlike- he loves like no other. I only have to walk into his house and he literally jumps off the couch saying - my mom is here!!! He can’t even sleep when he is at the lake with me because of his excitement- he dozes off and on all night randomly saying I love you mom. He’s the funniest person and can get away with saying all the things like stop talking, are we done and mom you have things to do.  

Dylan is a gift- I have always known it but yet I didn’t always know it. Things like self pity, bitterness and jealousy aren’t traits to brag about but putting myself out there it is important to admit they were a big part of my life. I think we all have the tendency to look around and want what we don’t have.  

Will there always be some jealousy that Dylan walks a harder road than so many? Of course. Will I continue to mourn the loss of what I dreamed for? Of course. This autism life is one that involves grieving and unfortunately I’m all too familiar.  

But with the grief and mourning comes celebrating. Celebrating and embracing the small joys and wins in life. It comes with acceptance that what you thought your ideal was isn’t and that’s ok.  

It isn’t a perfect life but it is a beautiful life filled with trips to arbys and long walks and lots of back patting. It is being loved by someone like you never knew was possible. It is pulling into the driveway of the blue house Dylan lives in and feeling contentment and gratitude.  

And all of this my friends is ideal.