Gillian Marchenko

Letting go of self-sabotage on the special needs journey

It took Polly, who was born with Down syndrome, a long time to walk. When she was around two and a half years old, her physical therapist loaned us a stander; this wooden contraption that looked like it may have been used for torture at some point in the past, designed to strap kids in while standing upright to build muscle mass, you know, the stuff that is critical for one to stand and walk. Because of the existence of an extra chromosome in Polly’s make up, she experienced extreme hypotonia, i.e. low muscle tone and gross motor challenges proved difficult and frustrating for our girl.

Our assignment was to strap Polly up in the stander for three hours a day, every day. Did I mention she was two-and-a-half?

At first, surprisingly, Polly was indifferent. I would tell her, “Polly, time to stand,” and hold out my left hand, palm down flat, two fingers from my right hand making an upside down V on top of the surface.  Polly would shrug her shoulders and we’d began the various steps required to get in the stander.

Soon after, though, she grew combative about standing. This is where the sabotage emerged. She figured out how to hike her little rear up over the thick leather strap that circled her middle, thus creating a ledge to sit on while she was supposed to be standing. She pulled the Velcro strap apart one handed, attempting to free herself. Eventually, it was all out war. Polly kicked the stander, pulled off the strap, and tried to push over the large wooden base. Thankfully I always got to her in time and she was unharmed. She made it clear she was sick and tired of the stander.

But we plodded on. Polly’s inability to walk frustrated her even more than that blasted stander, and I, being her mother, knew the grueling assignment was for her greater good. So, I made sure she ‘did her time.’

Letting go of self-sabotage on the special needs journey

Friedrich Nietzsche said, “What doesn’t kill us makes us stronger.”

Then why do I sabotage so many things in my life that ultimately will strengthen me? I ignore my Bible for Facebook. I focus on what other children are doing and compare them to the things my children aren’t even close to doing. I pick fights with my husband, and snap at the kids. I kick, I undo, I push.

The special needs journey can be difficult. Our daughter Evangeline, eight years old (Polly’s sister), has autism and Down syndrome. She is no where close to potty training, and her sensory needs, at times, causes her to lash out and bite, and scratch, and pull hair. I find myself at my wits end. I’m exhausted and unsure of how to help her. I’m unsure of how to help myself.

In the New Testament, the Apostle Paul writes about these struggles:

For I do not do the good I want to do, but the evil I do not want to do–this I keep on doing. -Romans 7:19

I can’t speak for you. But I know that if I continue to ignore good, profitable, and God-honoring things in my life, my proverbial ‘standers’ that help to strengthen and encourage me, I will lack muscle desperately needed, the muscle provided by God, to parent my children well.

I will sabotage myself and my family.

And that’s not what God has for me. That’s not what God wants for any of us.

So, let’s all learn from Polly, today. If you are a Christian, abide in Christ. Stay in his word, even when you’d rather peruse the Internet. Talk to others about your struggles. Kiss your spouse. Hug your kids. Tape scripture on your refrigerator… Do whatever it takes to let go of our sinner’s sabotage that Scripture says so easily entangles.

I’m trying… I’m failing a lot. But I am trying some more.

After a while, Polly gave up on sabotaging her stander. She grew stronger, and started climbing stars, pulled herself up on couches, and stepped out again and again, one shaky, muscle building step at a time, to a fuller life of participation and joy.

I want that for me. I want that for you, too.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:7

*This post was first published on specialneedsparenting.net. 

Have you had a chance to read my memoir about Down syndrome Sun Shine Down? If not, you can find an excerpt Noisetrade or pick up a copy of your own on Amazon.