Self-Care, Self-Realization, Self-Worth

I just read an article about self-care in raising a child with Down syndrome. Eat healthy, load up on those fruits and veggies. Drink lots of water. Get more sleep. Oh, and don’t forget to carve out personal time for you. The author qualified that this can be challenging when you have a child with Down syndrome. Just do your best.

Well doing my best wasn’t good enough. And eating more fruits and veggies wasn’t going to cut it.

I called my therapist and started seeing her again. I found myself repeating the same old crap with her since we met when Wil was 2 years old. I called my trusted friends. Again, I found myself repeating the same old stories. With all I had been through in raising Wil, hadn’t I grown more than this? Hadn’t I become more resilient?

The truth is I had grown. The truth is my resilience had increased. But the truth is I also had my feet planted firmly against a wall that would not budge. I was determined to break through the wall. I pounded every which way I could. I pleaded. I cried. I waited. I screamed. I walked away only to walk back. Again and again.

Then one of my friends said something to me that I was finally ready to hear. The wall had made its stance clear. It didn’t want to move.

I was the victim of my own doing. I finally realized that. The hurts were real, the pain was real, but it was my choice to stand right where I was on repeat. As someone who values growth and resilience, how had I allowed myself this victim’s stance? I was the only one in control of changing that. But I didn’t. I pointed. I blamed. I yelled. I cried. But I never broke the pattern. Why?

Every morning I read spiritual text and journal. It’s how I keep my head up and moving forward. It’s a joyful and meaningful process for me. I look forward to this time. When the emotional angst built up, I journaled more. I read more. I became clear on the fact I needed clarity. So that’s what I prayed for. Over and over again. I wrote CLARITY in my journal and just stared at it. I laid in bed and emptied my mind and thought, “Clarity, clarity, clarity.”

In raising Wil it’s always been about Wil. Raising a child with a disability doesn’t magically turn you into an inspiring person as society would tell you. I certainly didn’t feel an angel bestowing me with special powers, telling me God only gives me what I can handle. I had to figure this sh*t out.

I’ve been in the trenches. I’ve made mistakes. I’ve lived. I’ve learned. I’ve lived and learned again. And again. Through the years my horizons have continuously expanded and I’ve experienced new views of sunrises and sunsets. Except that one damn wall. It remains firmly rooted in place.

Then one random day, just recently, I stood in the hallway of my home and it hit me. Pummeled me, actually. I don’t remember why I was standing there; likely I had just came up the stairs from doing another round of laundry. But it chose that spot, the clarity I’d been journaling for, seeing a therapist for, talking to friends for, and praying for. Right smack in front of the coat closet between the front door and the living room.

It came to me like a movie scene when an actor’s life flashes before their eyes. Except for me it was was my life with Wil. I felt the scenes more than saw them. Pixels created from emotion. The early therapists that came to our home. The conversations I had with them. The hope I gained from them, the learning I did with them. Even as I saw myself manipulating Wil’s tiny limbs – what that meant to me was stronger than seeing it. My awkwardness turning into naturalness, one hour, one day, one year at a time. Over and again. Grappling for unseen answers, then once in view, stabbing my pick ax in the rock firmly, digging my dangling boots in the cliff edge, and climbing my way up. And the view from each of those climbs – staggering.

I had never internalized my worth in all of these experiences. It seems silly to say that out loud, but it’s true. It’s one thing to know something intellectually, and another all together to internalize the full meaning of it. I knew now why I had never allowed myself to internalize my own worth – why the fight was always for Wil and not for me.

If I acknowledged my own sacrifices in raising Wil – even to myself — then that admits loss; the end of an ideal.

I had long accepted the end of one ideal and embraced a new one. But when a wall is built around a certain ideal, how could sharing one’s sacrifices ever chance to break through that wall. In my mind, sharing the wider horizons, sharing all that is and can be is the way through. But I only found myself further distanced with every growing year.

When I finally allowed the weight of the sacrifices I have made wash through me I felt cleansed. Lighter. Stronger. More resilient. Grateful.

I realize now that self-care article was so deflating to me as I was searching for the wrong thing (but I will work on those fruits and veggies!). I was seeking self-realization.

Since my epiphany in the hallway, I’ve turned the page on an old story. That chapter is finally over.

It’s not that I no longer care about those walls — they are painful as I care about them deeply. But they are not mine to tear down. I’ve vacated the victim’s shoes I’ve chosen to wear and packed my self-worth with me because I own it.

My best work is going where I’ve always been headed. Expanding horizons. Making sacrifices. Creating new ideals. One hour, one day, one year at a time — energy in motion.