Mother Describes How She is Stepping Away to Help Son Regain Independence Following Stroke Rehabilitation
By Ann Nicolopulos
Mother of Former Shepherd Center Stroke Patient
“I am not your maid. Hang up your own clothes,” I tell my son. He replies, “One hand. Can’t. Hard.”
“Oh yes you can!” I say as my frustration rises along with his. ”Hang them up. You have your own place with a washer and dryer! There are people who have bigger deficits than you who take care of their own clothes.”
While raising his left arm, he shouts to me, ”One hand!”
It's a Mexican standoff – a duel of epic proportions. And the winner is....
I grab coat hangers, hurling them onto the sofa, along with his T-shirts. Securing my right arm tightly behind my back, I dramatically raise my left arm spitting the words to him: “Watch and learn.”
Loaded with determination, frustration and a lot of attitude, I angrily make my point. I slide the perfectly smooth plastic hanger through the collar of the shirt, while using my left hand. First attempt and success. Boom!
And then I look at him, proclaiming, “One and done, Jake. Now, you do the rest.”
I immediately leave the house, but with nowhere to go. I leave the house because I don't want to be tempted to rescue him – again – if he struggles. Upon returning, the T-shirts are hung.
A Mexican standoff compared to the Cuban Missile Crisis? No – just the ongoing battle between two people who are growing up and growing into our new roles, into our new normal.
Today, I stand and look in retrospect over the past four years. How many times have I rescued my child – sometimes by request, yet often unsolicited? Moreover, when you "do" something long enough, it often becomes assumed and expected.
Am I an enabler and an encourager of dependence?
One of the “advantages” of being a family member of an injured loved one is that I am able to justify my actions with almost anyone who may hint at challenging me. Most people are not going to argue, or perhaps call me out on being an enabler! After all, I am propped up by my mantra in life: “My son had a brain injury, almost died, so if I need to arrange and rearrange the world for him, I will do it!”
Again, most people are not going to “call me out” – that is, until now. I’m being called out on my enabling? Can you imagine the insensitivity of some people?
And my response? Thank you for rescuing me. Thank you for calling me out. I have been waiting for someone to tell me it is OK to step away – even if he falls.
Stepping away – and possibly seeing him fall – is one of the hardest things I have “TRIED” to do in this entire journey. This struggle rivals some aspects of watching his physical pain and suffering experienced in the acute stage following his stroke.
Letting go is a difficult challenge for any parent or loved one who has walked the hallways of a rehabilitation hospital. Our exclusive fraternity, titled “Families Who Have Lived and Walked the Journey of Acute Rehab,” can often become crippled and handicapped ourselves by the thought of loosening the reigns of protection.
As progress unveils itself in our loved ones, so do the reasoning or excuses for being the guardian angel of our loved ones.
How do you justify your actions?
Mine are really good. Four years ago, my husband and I were at the cusp of letting Jake go to the next stage of progression in his life, as well as our own. However, one day something unexpected and bad happened. And our son almost died. Like a thief in the night, the lives that we had known, planned and dreamed of suddenly became a memory – a distant one. We found ourselves right back where we started with him 18 years earlier at birth.
Caregiver, provider and protector.
As the story continued, our son got better. But the roller coaster ride took him from an 18-year-old back to birth and from birth fast forward to a 22-year-old – all in a four-year period.
Today, I am scared to let go. I don't want something bad to happen. I’ve already experienced bad, and I don't want to revisit that pain. It's my own version of “Breaking Bad.” My distorted thinking has led me to try and walk before my son, preparing the road, while removing any obstacles, barriers, hardships that may cause him to stumble.
Yet, if I don’t let go, I realize that I am only further handicapping him. Jake wants to be in control of his life, but on his terms (typical for his age).
Parents, do you recall the difficulty in letting go of your child when first learning to walk? The cushions around the edges of the fireplace, protecting them from the corners of the coffee table? Yes, we wanted our children to learn to walk, yet we did not want them to suffer the consequences of the fall.
How does a child learn to walk if you never let them fall?
I have spent countless hours and energy thinking, talking, preparing and planning how to protect my son from any future falls. What is wrong with that? I’m just being a good mom. Right?
There is nothing wrong with thinking and planning. But often, they become a disguise for obsession, manipulation, control, worry and instability. So, I turn to my source of strength and wisdom, which is my faith. When I read the following passage – I had previously highlighted it in hot pink with asterisks encircling the verse – I realized I had been down this road before.
"Lean on, trust in and be confident in the Lord with all your heart and mind, and do not rely on your own insight or understanding. In all your ways, know, recognize and acknowledge Him, and He will direct and make straight and plain your paths." – Proverbs 3:5-6
Earlier I mentioned my efforts in walking before him, preparing the path of life for Jake. Hmmm. I think it’s a bit audacious and prideful of me to think I could take over that duty from God. Maybe, just maybe, I am getting in His way of doing His work in Jake's life. You think?
Then, I envision the footprints on the beach – the poem – describing how one can feel such an emotional black out, brokenhearted with a lonely, broken spirit. And as the poem continues, you realize that God is the one who carries us despite the weight.God is my leader who takes my hand, walks with me and carries me through it.
The unpredictable journey of rehabilitation – the acceptance of our new normal – the struggle to loosen the grips of control....
I am not where I need to be today. But thankfully, I'm not where I was, even two weeks ago. Yes, I do have the innate desire to rescue, control and protect, but God is working on me.
Ann Nicolopulos of Anderson, S.C., is the mother of former Shepherd Center patient Jake Nicolopulos, who experienced a stroke when he was 18. Jake is now a student at Clemson University. Ann writes a blog, which can be found by clicking here.
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 935 inpatients, 541 day program patients and more than 7,300 outpatients each year.