Parents of children with SCI ask themselves not only when to let their children go, but how, and even whether to let go at all.

By E.M. Treston

Statistics show the average age at which a person sustains a spinal cord injury (SCI) is between 17 and 25, a time in life when the young adult is launching out on his or her own, graduating from school, starting a career, becoming engaged and starting to do all the things that are expected to happen to an adult within a lifetime.

An SCI changes that path, at least initially. Independence, so recently acquired, is suddenly gone. We revert back to infancy again, relying on our families to assist us in the simplest everyday activities.

I am not a psychologist; I have no studies to point to show the effects of such a trauma on the dynamics of the family. But I do have an SCI that I sustained in my teens. And I have a family. I know whereof I speak.

Safety vs. Liberty

I also spoke with a number of parents, some with children who have been injured less than three years and some whose children have been injured over 20 years, and they have all had to face that question of when to let go and let their young ones get back to the business of their lives.

I asked each parent what was the initial fear after their child’s injury. They all agreed that their initial fear was for their child’s life.

Vicki, mother of Brianna who has T-12 paraplegia, stated, “I remember an overwhelming feeling of gratitude; I was so grateful that she was alive, that she didn’t have a head injury that her level of injury was at her waist and not higher. She could use her arms and hands, she could breathe on her own, and she was here. I kept saying, ‘This is do-able!’ And it was!”

The question remains when do our families let us grow up again. I asked my mother, who was my primary caregiver when I returned home from rehabilitation, “When did you know that I would be okay?” My mother answered.

“I’m trying to think of all the times that you went out the door with your friends and I could not be there with you to help you with the things that you needed—to keep you safe. I would hear you and your friends come home giggling and trying to be quiet. I knew you would be okay because you were the same person you were before the accident.—strong-willed, dynamic, with loyal friends.”

A number of parents know that they will never totally let go because that is their role. “But I have learned to let go and let him live his life,” Diane, the mom of Frank, an older teenager with quadriplegia, said to me. “I had to tell myself Frank would not be sitting at home with us on a Friday night prior to his SCI/D, so why should I expect him to do that now? It reminds me of when he was a younger teenager and I wanted to hold him back from things to protect him and at the same time, knowing that I needed to let him try his wings.”

Sandy, the mother of a high quadriplegic son, Bryan, learned about letting go when she would go to see him. She used to kiss him on the top of the head when their visit was over. He told her that he didn’t like that: “You’re treating me like a baby!”

“That hurt,” Sandy said, “but I stopped, and that is part of letting go.”

It Takes Two

Joseph is a paraplegic in California. His mother tells other parents, “Be patient with yourself and your child. Realize that it is an incredible adjustment. It is devastating for the child. Try to give them hope. Focus on what they can do, or can learn to do, for without hope, there is nothing. Try to always be positive and learn everything about SCI/D. I have not let go, I have simply allowed Joe to grow. Joe is still my son, my first born, my child, but he is also his own person, and he began making his own decisions in a safe environment as a teenager and is now making them as a man on his own.”

When asked about giving advice to new families, those who have been there emphasize not to forget the rest of the family. The medical community may not always know what is best, so it is imperative that you educate yourself and your family about SCI/D. The future is always uncertain. Having a family member who now uses a wheelchair for mobility changes many things. The role of parent is always in a constant fl ux— caregiver, advocate, motivational coach, and occasional laundry washer. Those are all just little parts of the job description.

It’s not only our parents who let us go, grow up and move on. We let them go, too. SCI/D may change the path a family is on, but, regardless, we are still mothers and fathers, sons and daughters.

Brianna’s mom put it best, I think: “I guess I got to the point where I realized that my daughter was paralyzed, but I didn’t want her to be crippled. There’s a big difference, and some of that was up to me.”

E.M. Treston is a regular contributor to Action.