You’ve been away for 144 days. Yes, we have little reunions for appointments and such, but your bedroom is empty. The bed is just how you left it, unless I’m sitting on it, teary and reminiscing. I miss the madness, some days. Seeing your feet hit the floor at 100mph every morning. Watching you bravely navigate the overstimulating days.
I admire the artwork you proudly mounted inside your custom-made wooden frame, the drawings you created to process your feelings of fear and uncertainty when hospitalized and all the too-small suits hanging in the closet.
I dream about what could have been and what is still to be, not unlike other parents, I guess.
I know you are in the best place for you, but the “hard stop”, after being “on” every minute of every day is emotional. Everyone asks, “How are YOU doing mama?” That answer also changes minute to minute. It doesn’t matter that I know you are in the best place for this season of life, I still have so many feelings. Well-intended folks whom I love dearly, remind me of this as a way to stave off my tears. Choose practicality over pouting.
Feelings that range from:
Pride in all the hard work you have done and are doing during this time apart.
Fear that you are scared and might hurt yourself.
Joy that you are doing this thing called life, without me.
Sadness that you are doing this thing called life, without me.
Regret that you had such a hard time at home, trying to manage expectations with your capabilities.
Empowerment that I now have time to dedicate to my career.
Regret about all the mixed messages you still struggle to make sense of.
Reminding myself that we did all those speeches because you are driven to help others. Praying it wasn’t my pride or ego driving you.
Relief that we are all still alive.
Hope that you will find yourself and learn to live free of so much fear.
Wondering how God chose you to be mine, knowing I would not be enough.
Prayerful that we all find peace.
Indecision is my new state of mind. Unless it’s work, music or church related, my answer is “I don’t know.”
What do I like to eat when I’m alone?
What should I do now?
Should I call someone?
Is this what loneliness feels like or is this depression?
What do other people do with all the hours of a day?
Do I like to read?
Can I sit still?
What type of clothes do I like?
Will I ever push a luggage cart (Jakey’s job) without crying?
What type of movies do I like?
Should I go grocery shopping? What should I buy?
Am I cool or a nerd?
During the last 17 years, none of these questions mattered. Literally, everything I did was to plan for, react to, strategize or ignore “everything Jake”. The answers to all these questions were rooted in avoiding crisis, behavior management and staying alive. There wasn’t a lot of gray area and no room for my feelings.
So I’m starting over and trying to figure my “free-time” self, out. It’s hard to do at 50! I almost feel like I have to reinvent myself. So far, I’ve decided to focus on my music, faith/spirituality/gratitude and being “fully present” in every minute. For too many years my attention was divided; Jake 80% and 20% for the rest. Poor Chris landed in the rest too. I’m so lucky, SO DAMN LUCKY, he stayed to fight through this with me.
This all feels very weird, as I sit quietly at the beach, one of my (and Jake’s) favorite hideaways. Amazingly, I discovered one of my favorite parenting rules, actually helps me cope during the dark times.
Autism parents and teachers often ask, “How do you stay in control when you are so scared or angry.” My answer is always, “I’m the best parent when I imagine that Jesus is sitting right next to me, seeing me. I have to think, would He approve of how I’m speaking, reacting to or behaving with my child. Am I parenting from love or fear?”
I take this idea with me everywhere now. It helps me stay focused and give love.
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