Sometimes I feel that my life is a very odd, very difficult balance between holding on and letting go—between being organized and structured on the one hand, and being free enough to accept whatever comes my way on the other.
How do I hold on?
By following routines for the benefit of the people on the autism spectrum.
By regimenting my time when the kids are at school or therapy, so as to accomplish all the things that need doing.
By micromanaging the meds, in all their abundance.
By organizing the therapy, the respite care, the rides to the orthodontist and merit badge classes, the grocery shopping et al.
Everyone is busy. I do not claim superiority in this realm. And honestly, it’s not a badge of nobility, just being busy. It’s simply a factual state at this point in time for me.
I’m busy because I have lots of special needs children, a husband, and church and work and my own interests. I manage by releasing my inner organizational hound and letting her do her thing, with the expectation that I can eat gingersnaps or whatever when things are completed. Or while I am completing them. Whatever. Cookies.
How do I let go?
By setting my expectations very low. For example, Fall Break is this week and I have made no plans other than to Be Open and Go With the Flow. Also, Let’s Survive.
By not fretting about anything ahead. Cross that bridge when we get there, etc. (Of course, now the break is basically here, and I am feeling less zen about it. It’s here. Like a root canal).
By partaking less of the social media. I still like it and I still use it, but less. I’ve realized that I lose my concentrated focus on my life and my responsibilities when I spend too much energy absorbing other people’s lives. I like people and I care about them. I just can’t read about them all the time. For survival purposes.
By taking naps when I can. These “found naps” make up for the lost time sleeping on weekends when Jack goes down late and snaps up like a hungry bear at the crack of dawn.
These examples make me sound like I have the holding on/letting go thing really buttoned up. My reality, though, isn’t so black and white. There is a lot of inward questioning if I’m letting go when I should be holding on, and vice versa.
I occasionally feel that special needs parenting is gaslighting me. When I can’t find solutions, I question my capacity, my mental acuity, my sanity. Am I just stupid? Am I missing the obvious answers? Am I the problem? Am I really not strong enough to face a five-day school holiday with Jack?
I spent a prayerful morning with God. I started with, “help me find solutions for this break,” which (when all the respite options were unavailable) turned into, “help me feel that Jack and I are not abandoned.”
My other children are going to spend time with cousins and grandparents. Jeff will be working. Jack and I will be hanging out, alone. I know on a rational level that the world isn’t abandoning us, simply because they can go and do regular things while we can’t.
So anyway, I prayed that I wouldn’t feel left behind, but that Jack and I could enjoy being together.
And three things happened:
- Junior is now able to help with Jack for a good chunk of time over the next few days. This one little switch in plans is basically saving my life.
- Jeff was able to take Friday off work, a minor miracle in this crazy work season.
- I read a poem written by my gifted friend, Melody, whose poetry sounds how my spiritual experiences feel.
“Never Yours to Carry”
There was something about weight,
about a heaviness of heart —
that brought me to my knees,
low down in the soil of Life,
deep with gravity of tears.
There was something in
the dark night of the soul
that left me blind to a light,
a light so close I dared not look,
and deaf to a voice in my ear —
what if I am not alone?
What if words of prophets
and songs of grandmothers
are real and He loves me,
and walks with me, carries me?
And what if I look for his face,
feel the weight of my head
on his shoulder and listen to
him whisper: You are mine.
I am your way. And this burden
was never yours to carry.
Melody Newey Johnson, 2016
I read it, and I woke up to the events of today. Before, there was sadness and a sense of isolation. Now, I see that Jack and I were never alone.
Jesus carved us in the palms of his hands. He will never forget us.
I am carrying Jack and Jesus is carrying me.