5 Things I Wish I Had Known After My Daughter's Spinal Cord Injury

A friend asked me to share what I wish I had been told at the beginning when my daughter Beth was injured. She has a spinal cord injury at C6-7. My first list began with three thoughts:

Breathe deeply. Hug. Rest. Repeat.

Find a good listener. Share your feelings with someone who cares.

Let other people help. Get comfortable asking for help until you are back to being the one who can give instead of receive.

Then I had to stop writing the list. I realized that I had been told these things, in one way or another. Thankfully, family and friends had rallied to support us. Even so, I didn’t sleep during the first days and was unable to talk about my feelings. I also could not ask for help. I had to rethink my list. I started over with things I had not heard soon after the accident.

1. Find the best medical options. Begin with a top hospital. Take time to research rehab centers. For example, consider the Chicago Shriners Hospital for children up to 21 years of age for rehab (or outpatient treatment). Be where you need to be.

After intensive care, Beth transferred to a Toledo rehab center. It didn’t feel right, so we soon moved to another. The second center in Green Springs was perfect for physical therapy, but the doctors on staff had no experience with spinal cord injury. We had to wait until Beth came home to connect with great doctors.

2. Seek support right away. Find local disability groups. For spinal cord injuries, contact the Reeve Foundation’s Peer & Family Support program. Personal mentors and a paralysis resource guide are available at the Christopher & Dana Reeve Foundation. Also, check out AbleThrive.

I didn’t reach out to the wonderful spinal cord injury group in Toledo until months after Beth’s injury. Sooner would have been better.

3. Trust the experts. Believe what the top doctors and physical therapists tell you. Through the first weeks after the accident when Beth could not move, I thought that the experts were giving her false hope about things like sitting up unassisted. I wanted to believe them, but I didn’t understand that progress after a C6-7 spinal cord injury takes sustained effort over an incredibly long time.

4. Don’t lose yourself in fear. The first year after the accident, I worried endlessly about the health risks of quadriplegia, ready to drive to the emergency room at any moment. As Beth did everything she could to be healthy, she showed me that I didn’t need to be afraid. Professional counseling helped me, too.

5. Look for hope, even when it is out of sight. In the beginning, too much time passed before I truly believed that Beth would be OK. She believed it from the start, and hope is a powerful thing. I could not imagine her becoming independent or traveling the world or loving her life. I’m happy that I was wrong.

Cindy and her daughter - a young woman in a wheelchair with her mom
Cindy and her daughter, Beth.

Follow this journey on Struggling With Serendipity.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Spinal Cord Injury

The 2-Letter Word That Was the Key to My Recovery After a Spinal Cord Injury

The day after Christmas 1979, at the age of 17, I broke my neck playing football. I found the courage and strength to recover, graduated from high school, and earned my college degree and my law degree as a quadriplegic. I found my purpose: to achieve more than expected, and to aspire to be the best [...]

A Letter to the Late Dana Reeve, From Eric LeGrand's Mother

Dear Dana, I get it. I truly get it. I never had the pleasure of meeting you before your passing 10 years ago this month, but if you came back for one day, I would tell you that I understand what you went through. We both figured out how to move forward when our lives [...]

When You’re Striving to Make Your Story Come Full Circle After a Life-Altering Accident

On a perfect spring morning two and a half years ago, I was in Chicago for a business trip. As I was about to walk out the office door to head over to the event I was in town for, I received a call from back in New Jersey where I lived. It was the [...]

Disabled Woman Describes Negative Tinder Experience as ‘Kind of Amazing’

Kristen Parisi, 30, chatted with Cosmopolitan about her experience on Tinder, and while she’s no longer on the dating app, she tells the magazine she’s grateful for some of the negative experiences she had while using it. Parisi is a public relations executive, freelance writer and speaker who currently resides in New York City. When she [...]