Becoming a caregiver | Guest Blogger Amber Collie

Posted by Reeve Staff in Life After Paralysis on March 29, 2019 # Health, Caregiving

It was May 31, 2010, and my 15-year-old son is lying oddly still on a gurney with a neck brace on. He had broken his neck just hours before in a beach accident that had left him a C4 quadriplegic. I knew absolutely nothing about the paralyzed world. I thought all wheelchairs were the same. Zack is my oldest of four children. He loved to be outdoors, he rode dirt bikes, liked to snowboard, surf, skate, and had just passed his permit driving test. I was standing in an ER room at Hoag Hospital in Newport Beach, California. I can remember there being sand on the floor. I heard what the doctor told me, but all I could think about was that my son was alive. We were moved from Hoag Hospital to Choc Children’s in Orange County. During the ride, I noticed the EMT’s were probably only about five to six years older than Zack. They were talking about their week, it's a job for them, meanwhile, I was still trying to wrap my head around everything. The quick version is Zack was in intensive care for 10 days, had six-hour surgery to replace his crushed fourth vertebrae, recovery, then onto rehab hospital 30 minutes from home. Making his hospital stay about three months. I stayed with Zack the entire time. My family would come visit bringing my other three kids to see us. At that time, they were 13, 6 and 5 -years- old. I have many stories from this period of time, hope to share later.

Back at home, my house was under construction, pouring walkways, making ramps, widening doorways and putting in a roll in shower. Our days were a combination of around the clock doctors and nurses, physical and occupational therapy, Hoyer lifts, bowel program training, group therapy, and terrible hospital food. There were many visitors and well-wishers. Friends that went silent and friends that stepped it up. Most days was like walking in a dream. I gathered as much info as I could handle or couldn't handle. This went on for nine weeks. Zack was released from the hospital the week of his 16th birthday. I kept hearing the phrase “New Normal” I didn't want a new normal! I wanted things back to the way they were. I wanted to hear Zack storm through the front door after walking home from school, coming in hungry and picking on his younger siblings. I wanted to tell him to keep his hands to himself. Now, he couldn’t move them. I was trying to remember everything taught to me, and definitely missing the nurse help button.

I knew Zack could not sit home. I drive a truck, and someone had gifted us a Bruno chair, a seat that with a remote comes out of the truck, lowers and we then lift Zack onto the chair and raise him back up into the passenger side. I used this system for the first three years. My husband got up early and went to work. My daily schedule became getting the four kids up, dressed, fed, lunches packed, by 8 AM.

We would lift Zack into the truck, I’d drop off my two youngest, as they were now Kindergarten and second grade, then drop off my 8th grader at his Jr. high. We would hit the freeway, drive one hour and 20 minutes to a recommended physical therapy place. Zack worked out three hours while I talked and processed with other family members of paralyzed loved ones. I then drove back the hour and 20 minutes just in time to pick up the three kids from school, go home lift Zack out of the truck, in the house, onto bed, onto commode chair for bowel program, shower, re-dressed, dinner homework, and bedtime routine for Zack.

For years, Zack would need something during the night mostly to reposition him after a spasm made his legs curl up to his chest. We finally figured out we could tie his legs down, we use motorcycle tie downs. He needed water to drink, we figured out a camelback (hiking water pack) works well at night time. After three years I was able to sleep through the night. Our first large goal was achieved. We found having small and large goals really help to keep moving forward in a positive direction.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.