(31 Days) A Difficult Mind: Day 28, Two Faced Confession

I’ve joined the 31 Day Blogging Challenge…31 Days of exploring what it means to live with a neurodiverse child. #write31days

Hands

Confession: I lead a double life.

There are two distinct sides of my story. On one side is the hours my son and I spend together and on the other side is the time he and I aren’t together.

I love my son. This has to be understood. When I talk about my double life it can feel like I don’t love my son or I wished he was different. Neither of those things are true. While I would never want him to struggle with a Difficult mind, I don’t love him less or think of him as less of a person because he does. I love him deeply.

One of the struggles I face is feeling that I have two lives. It takes a special skill set to parent my son well. When he is around I have those tools front and center, ready to engage. Then he goes to school or church or I may go with a friend or attend a community activity and then, I don’t need those tools, so I put them away for awhile.

Think about hiking. You could hike in a local park and exert minimal effort OR you could hike Mount Everest and be risking your life. Both are hiking, one just takes more effort than the other. This is how I feel about my role as a parent, I am always parenting but one part of my parenting journey takes a lot more effort than the other.

When my son is at school or elsewhere we have a regular, good paced flow. We can come and go as needed, easily have people in and out and just be.

When my son is with me all that changes. We have to have a rigid routine, our flow is more like marching than gentle walking and every single change and outcome needs to be planned and discussed.

Rigidity is exhausting, it requires a lot of effort.

Mental Effort: Constant planning ahead is required. If A then B is an equation I constantly have to weigh out. I am always asking the question “Will it be worth the effort?” Since there are no guarantees and few predictable patterns, by the time the end of the day comes, my brain is exhausted.

Emotional Effort: Emotions are something my son does not process well. If I over react or under react it could change the whole day. The amount of self control it takes to exert almost no emotion is beyond tiring. Being the emotional constant helps our son process his own unstable emotions. Beyond tiring it can also be hurtful to my own heart if I don’t have time and space to process my feelings.

Physically Exhausting: Part of my sons Difficult Mind means he also has a difficult body. He is constantly on the go. Since he doesn’t self regulate very well this means he needs either to be engaged with someone or engaged with something. I’m thankful that he can read because this gives me a break, but when he isn’t reading, he wants to be “with” someone, doing “something”. While I love doing things with my kids, this takes engaging our kids to a whole new level, sitting can become a luxury!

So what’s the point? Life is tiring and????

The point is this, we don’t always get to be the person we want to be. One of the sacrifices I make for my son is being who he NEEDS me to be. This means I give up a little part of who I am every single day.

Living this double life means that I have grown compassionate to the plight of others. Instead of saying “if you don’t like it, change it” I now ask “is there anything you can change and if not, what can I do to make this hard thing better”.

We don’t always have the option of another path but we can always choose to find joy in the one we have.

 

“Hope and sorrow in it all there’s rescue and there’s not.”

There’s Rescue: I have learned about parts of my heart and soul that I would have never explored had it not been for the way my son needs to be parented.

There’s Not: To parent my son takes so much effort, it is exhausting and it is not the way I want to function all the time.

Today I find joy in personality. I love that we are able to make choices about who we are and how we engage with one another. It is a life saving and life giving part of our humanity.

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