Letting him learn
Guest Blogger: Stacey Gagnon
It’s painful isn’t it? I feel your gaze and from the corner of my eye I see that your facial expression matches what I feel inside every single time. I see the fear as you watch and I cannot reassure you that he won’t fall and that there won’t be tears. I see you look at me and I bet I look indifferent. I’m sitting holding my phone seemingly engrossed in the latest Facebook drama and unaware to what is playing out before us. I’m not. I am absolutely gripped by fear because I know he very well may fall. I know that this is so hard for him. I know every single thought you are thinking, but I must pretend I’m not even noticing. I must become hardened to the falls and the failed attempts. Yes, my child must fall before he can soar. It has become my job to sit back and watch my five-year-old sweat great drops as he hauls his non-working legs up a flight of stairs. I must look away as he tests his limits. I have to pretend and say “yes, you can climb up into that chair by yourself” while inside I can’t figure out how he would possibly have the physical strength. And when you stand up to catch him or to help him, I will suddenly be available. Not available to help him through this task, but to stop you. Yes, it is not easy to see my son work so hard, or fall so far, but if you help him he will become reliant on that help. He will learn to be handicapped by his mind, not his body. I must do this because if I don’t, I have disabled my son. Fear and helplessness will paralyze him more than being in a wheelchair.
Last week I made the mistake of limiting my son in an effort to protect him from failure. We were at the doctor’s office and he wanted to climb from his wheelchair up onto the exam table. I told him no, and lifted him up onto the table myself. After the doctor left, and I had transferred him back to his chair, he pointed to the table and said “Israel, do it”. I started to tell him no, because in my mind it was impossible and he would just fall. But I stopped at the look of sheer determination on his face and let him try. With pure grit and strength, he grabbed the plastic top of the exam table and began to pull himself off his wheelchair up the side of the table. Halfway up, he was dangling and in my mind we had reached the point I was going to catch him mid-fall and place him back in his chair. My hand poised under his backside, but I didn’t touch him. I quietly said. “you can do it”. I waited several endless seconds and with a burst of strength he dead lifted his body the rest of the way up and into a sitting position. I was completely stunned. My child had just transferred from a child’s wheelchair onto an adult exam table, without handholds or assistance. He just looked at me, grinned and in his emergent English said, “Israel, do it!”
Israel was born with thoracic level spina bifida, which means he has no feeling from the upper waist down. Placed at birth in an orphanage, he was deprived of everything but the basics to live. He had all kinds of medical issues listed, many I had never even heard of. He was listed as a child that would never run, never dance, never walk. A child that would not be able to use the restroom on his own. A boy that was never what I imagined in a son. We picked a child with a diagnosis that would devastate parents. But the reality is this, we did not pick out a child with a true impairment. We did not pick up a child from an orphanage in Eastern Europe that was handicapped in any way that truly mattered. We have chosen a child whose heart beats with love and kindness. We have picked a child whose internal qualities outshine any physical impairment he has. A boy that fights for independence and freedom. We have found a child that was bound by his disability in an orphanage, but when given a family and equipment, has absolutely soared. Israel’s determination is like nothing I have ever experienced. Tasks and activities that seem impossible, he conquers. He has not backed down from the hard things and in the five months he has been home, can climb stairs, pop wheelies in his wheelchair and transfer from the floor into his wheelchair unassisted. Every mountain that seems insurmountable is attempted with a face of determination and strength. And as his mother, I’m the one learning to let him try things that seem too hard. In the orphanage he had to fight for every scrap of worth and independence. The very things that seem so devastating about his life, have actually shaped him into an incredible child. I’m the one that has had to learn to get out of his way. And it seems ironic that I once feared how he might hold our family back in going places and doing things. Seems like the opposite has occurred, and Israel has taught us not to let things hold us back. He has completely changed our parenting.
So, I ask that when you see my son struggle and I appear cold and indifferent, do not look at me and cringe with judgement. Please look my way and smile. Silently share my fear, and encourage me. Because I am raising a man. A man who needs to fall before he can soar. A man whose character and strength will run deep in his veins and will be obtained through scars, falls and trials. I am raising a man that will get back up, again and again because his mama said he could. And if you ask me why I am not helping him, I will simply answer, “I am”.
**Editor Note – We asked Stacy if she could describe the challenges of public accommodation barriers, here is her response….
“The biggest challenge we have is the lack of parks, restaurants and stores that are ADA compliant. When we walk in a store with narrow aisles or displays in the middle of the aisle, it is very difficult, if not impossible to navigate. We are learning which places we can frequent, and what would be impossible. Right now, Israel is carried in places like this, and he doesn’t like it. It takes away the freedom that his wheelchair provides. When we can’t allow him to utilize his wheelchair, we are essentially taking away his legs. This holds true for parks and restaurants. We find that we are very limited living in a rural area, and our son needs ADA compliance in order to be mobile.”