​Ups & Downs of Being a Caregiver

Posted by Amber Collie in Life After Paralysis on February 18, 2022 # Caregiving

Selfie of Amber and Zack with palm trees behind themBecoming a mom makes you a natural caregiver, but having one of your children suddenly paralyzed is a different level of caregiving that was not even in my imagination. Zack, my oldest child, broke his neck in a beach accident when he was 15. Instantly the life we knew was gone, and a new life path was forced on our family. I ran a photography business and raised my children at the time of injury. I had no idea that all that would change in an instant. It’s hard to express the constantly changing emotions you feel going through this.

This was my boy, the most active of my 4 children, and now he’s lying abnormally still in a hospital bed. Hearing news that your child will never walk again or have use of his hands, they must be talking about someone else because you can’t even absorb it. Trying to wrap your head around what the Dr’s are telling you. The hospital becomes your new home for months at a time. They're showing you and teaching you things that you don’t want to learn.

Even over a decade later, I find it difficult to talk about those early months, even the first couple of years. I remember I had a tremendous amount of adrenaline. I was a super mom rising to every need of my son. I didn’t sleep through the night for over 3 years. I was determined to help my boy and was willing to do whatever I needed, which involved me becoming his full-time, 7 days a week caregiver. This left little time for my other 3 children, which was hard for them and me.

I can honestly say I gave and did my very best, but something had to give— that ended up being me. My needs were pushed to the side when that happens; it’s not going to end well. There were several times I hit a wall. The first was around that 3-year mark. I hadn’t cried or broken down. My son was a quadriplegic, and I was like a robot. I was holding it together. Most of the time, I did a good, even great job with moving Zack forward in his life, navigating the rest of high school now in a wheelchair, losing friends, college, and the stress of how this will work.

There was also lots of physical, occupational and talk therapy for Zack. I should have gone too. I can remember slowly getting angry, then angrier, tired, overwhelmed and burnt-out. I was so fiercely focused on Zack moving forward in life I completely forgot about myself. I managed to get through that season, expressing myself with very bad language. I was angry with everyone. Thank goodness that did pass. Zack and I learned how to communicate better and give each other space. Most moms and 18-year-old sons do not spend that much time together. Zack was just at the age he should be out experiencing life as a young adult.

Zack and Amber posing. Zack is wearing a purple shirt and using a wheelchair. Amber is standing behind him.The stages of grief are real, and everyone feels them at one time or another. Not in any order. They don’t have a time limit. They are just there waiting for you to process. The whole family should have gone through talk therapy, group therapy, or support group in hindsight. It’s interesting how emotional things can affect you so many years later if you ignore them. I didn’t think I was. I have a great group of supporting moms; all of us have quadriplegic sons. These women have helped me more than anyone. They get it— the heartbreak, pain and suffering and all the ups and the downs of caregiving. You love this person you’re caring for, and you’ll do anything for them. But you must learn to express your needs in a reasonable, kind way. Do not neglect your needs. I used to think that it was selfish if I did things for my son couldn’t do them, but that is not a healthy way of thinking. I now know that if you care for yourself, you’re giving the gift of being at your best as a caregiver to the one you love. Process those emotions and get them out. Fill yourself up, and you will have more to give.

My life has had many parts, I could write a book just on that section but let's fast forward to when I married Adron Collie. Two weeks after turning 20 (yes, very young!) I had Zackery at age 22, Levi at 24, six years later Kaden, and 18 months after that daughter Laila, making me a busy mother of four. At that time, I also ran a photography business. The year Zack was injured I had a child in Preschool, Elementary, Jr. High and High School. Four kids in four schools! I thought I was so busy, just getting their drop off and pick up times correct was a challenge. I have to laugh now thinking back on that because little did I know my life was just about to turn upside down.

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.