Letting go

Posted by Reeve Staff in Life After Paralysis on October 11, 2019 # Caregiving, Relationships

by Amber Collie

This may be easier for me to say because this ends well. My quadriplegic son Zack, now 25, lives independently with his fiancé’ and has an awesome caregiver who helps out three days a week. However, I want to talk about how we got there. When he was injured at the beach, at 15-years-old, our lives turned upside down. I immediately went into full mama bear mode; doing whatever I had to do so my son could move forward. I was determined to help make a good life for Zack. I learned about the injury, we went to multiple therapies, we fundraised, and he even went back to high school. I was getting up with Zack multiple times a night, and additionally caring for three younger siblings; in other words, those first couple years are a blur. Two and a half years later, I crashed. I was exhausted, overwhelmed, my marriage was suffering, and I hit the angry stage in the grief process. One day at a time was all I could do. I honestly believe Zack’s unwavering positive spirit is what kept me moving forward. If he could do it, I could do it. I continued making small and large goals and talked to other moms with injured children. Making any time for myself felt impossible, but I highly recommend carving out the time even if just a 10-minute recharge.

People kept asking me if I had help. At that time, I felt like I couldn't even slow down to find help; the thought of someone else doing my son’s care seemed strange. Our first caregiver outside family came after Zack’s first year of college, I wanted Zack to experience on-campus living. We were able to get a scholarship for the tuition (through a program called Swim With Mike; injured athletes go to college) I wanted Zack to feel what it was like to be independent. I didn't know how this could happen unless I hired outside help, he couldn't live on campus with his mom! I called agencies but they were so expensive! I didn't want to but ended up putting an ad on Craigslist for a private caregiver. My vision: young, lives on campus with Zack, has the experience, be his best friend and available 24/7, hmmmmm, I may have been asking too much! Also giving up that caregiver position was harder than I realized; Zack was used to me doing everything and he had his way of doing things. Well, we did not get what I set out looking for.

We ended up with a 40 something, Philippine, dad of two. Since school was about to start, I desperately hired Melvin. Being around my age it felt safe and he was experienced. Zack was only 18 and didn't appreciate him; he complained Melvin didn't do things the way I did. They lived on campus a semester navigating things along the way. He had the 24-hour help I thought he needed. I don't think it was until Melvin moved on that Zack fully realized what he had (they still keep in touch).

Moving back home and looking for part-time help was difficult. I placed another ad, screened calls, and set up interviews. Zack and I would go to Starbucks, I’d schedule a few interviews in a row about a half-hour apart. Boy did we have some characters. Then the training: on the first day, they would follow me around watching as I explained Zack’s routine. On the second day, I had them take over and I stayed around if they had questions. By the third day, they were getting the hang of it. We went through a few caregivers, each time letting go a little and realizing there is no perfect caregiver. I grew to value the trust and kindness of a caregiver overdoing every little thing perfectly as Zack wanted. This was definitely a learning curve. Zack went back to campus living another semester, this time with only a part-time caregiver Eli who slept there, got him up dressed and ready for school each morning. Once he was in his wheelchair, the caregiver left and Zack went off to class on his own. Utilizing the school's disabilities program, such as getting a notetaker, help with tests, etc. He would navigate each day which was really good for him to learn. Then Eli would come back around dinnertime or later and do the bedtime routine. We learned something after each caregiver experience. I know now not to be so picky and to really appreciate the help. Having multiple caregivers in Zack’s life with different personalities and styles has allowed him to mature and has forced him to do more than he thought he could do. It's hard to not worry about your kids, especially one that is living with paralysis. Believe me, I have done my fair share of thinking worst-case scenario. We've had a caregiver pass away (not on our watch), had one not show up, and one that was in jail for a seatbelt ticket that went to a warrant. These cases are not mentioned to scare you, but to point out caregivers are people with lives of their own.

Don't get stuck in a routine that is not flexible; I noticed this the more that I let Zack grow and figure things out for himself. By making his own decisions, he can accomplish things on his own and feel the satisfaction that brings. He has become good friends with his recent caregiver Israel now going on two-plus years and has a healthy balance between what he needs and staying open to suggestions. He has learned to communicate what is important to him. Now in Grad school, he has lived independently with his fiancé for 10 months with the help of Israel. The three of them even just went on a cruise to Mexico! Great having someone who looks tough, with a kind heart and happened to speak the language, great for bargaining.

To all moms: lighten your grip even with good intentions and see what happens when you let go!

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.