“What I am doing you do not understand now, but afterward you will understand.”
TJ had a sister named Chandler. They were three years apart and were the two youngest of our five children. They had the typical sister-brother relationship growing up. They loved each other, they hated each other; they fought, they made up; they were embarrassed of each other, they defended each other; they told on each other, and they covered up for each other.
TJ was the compliant younger child, and Chandler was the bossy older sister. Chandler pretended she was the mother, and being the easy-going child that TJ was, he did whatever she told him to. They were the perfect match. She dressed him, carried him around, painted his fingernails, and styled his hair with barrettes. Other days she lined TJ and her stuffed animals up in her room and made them sit at attention while she played teacher and gave them homework, and once in a while she drove TJ around in her little pink motorcar.
They shared a close bond and were the best of friends. It’s hard to find a picture of them when they were youngsters without their arms around each other. They raised hamsters together, planned practical jokes to play on their father, and spun cars in circles on Ashworth Road when they were teenagers, which I didn’t find out about until TJ’s funeral. They were definitely partners in crime.
Chandler was married in January of 2015. TJ was two years into his brain injury and had just moved back home two months prior. Chandler wanted a simple wedding at home with just a few close family members. Her wedding venue was our family room. It was a beautiful, intimate wedding. After the ceremony, during pictures, TJ broke down and sobbed, and the entire room began wiping their eyes as they watched this young man struggle. I never asked him why he was so upset, but I believed it was because the days of them being kids together was over. Life had now changed drastically for both of them and they could never go back to the way things used to be.
After they were married, Chandler and her husband Julian moved to Cedar Rapids, which is a city two hours away from Des Moines, but they were still close enough to come home quite often to visit and spend time with family. Many times while Chandler was living there, she expressed that she was homesick and wanted to move back to Des Moines but was unfortunately unable due to jobs and financial reasons. Finally, after a few years of living away, in the fall of 2017, they were unexpectedly in a good place where it was the perfect time to move back home.
At the time of their move, Julian was blessed with a work-from-home job, and only Chandler had the task of finding a new job. In the summer of 2017, we began self-paying for caregivers, and since Chandler was moving back, we struck up a deal with her to be his caregiver for a while until she found a permanent job. It was a win-win for all of us.
But just a couple of days after she moved home, TJ was admitted into the hospital for what was to be his last time, although we didn’t know that at the time. Whenever TJ was in the hospital, we generally never left him alone because communication with the nursing staff was very difficult, so Chandler took the evening caregiver shift. She was wonderful at it. She took ownership of it and having her there gave me a tremendous break. She was fiercely protective of him and was his biggest advocate……but she also made him do things that he didn’t want to do, and now that he was older, he wasn’t so compliant anymore.
One day Chandler gave TJ a shower, and he was irritated with her. When she tried to clean him on the right side, he moved to the left. And when she tried to clean him on the left side, he moved to the right. After struggling with him for 45 minutes, she told him it was time to get out. But TJ didn’t want to get out, so he wrapped his arm around the shower bar and held on for dear life as she pulled and tugged. And when she finally got his arm free, he then pushed his leg against the shower wall to brace himself so that she was unable to move him.
And then my phone rang.
“Hello,” I answered.
“Mom, TJ isn’t listening to me,” Chandler said. “He has been in the shower for 45 minutes, and he won’t get out. Therapy is coming in soon, and he needs to get ready.”
“Ok, put him on speaker,” I said. “TJ, knock it off. Get out of the shower. You need to listen to your sister. This is already hard enough, and you don’t need to make it any harder.”
That was all it took, and then he got out.
Many times during this hospitalization, Chandler expressed frustration about TJ being in the hospital. When she moved home and became his caregiver, she was looking forward to hanging out with her brother again and doing fun things together, like going to movies, bowling, and shopping. But since coming home, all they had done together was sit in a hospital. She couldn’t wait for him to get healthy again and be discharged.
But as the hospitalization drug on and TJ’s health declined, for the first time, Chandler began to understand how stressful and exhausting it was taking care of him. Many times while on her way to the hospital, she called crying and said she was so anxious about taking care of him. Because he was unable to talk and was too weak to sign, it was impossible to figure out what he needed. When we couldn’t figure it out, he became agitated and upset. It was miserable for both TJ and the caregiver. We felt incredibly sorry for him for the pain and suffering he was going through, and we constantly felt like we were failing him. It was a lot for a young woman in her 20s to go through.
By the end of TJ’s three-month stay in the hospital, his lungs had been destroyed by either cavitary pneumonia or blood clots. Doctors told us that even if he did live past this illness, the cavities in his lungs would fill up with fluid and he would get infection after infection and the infections would eventually kill him. That was brutal news for a sibling to hear. Chandler was grief stricken to lose her brother and went home every night researching other hospitals we could transfer him to and different procedures we could try like lung transplants in hopes of prolonging his life. However, her father and I instinctively knew that this was the end. We had done all we could do for him and taken him everywhere we could think of, and it was time to let him go. Death is incredibly painful, and it was hard watching both of our children struggle.
Months after the funeral and shock wore off, although Chandler was still incredibly sad, we began to see a beautiful spirit emerge from inside of her. In the beginning of TJ’s hospitalization, she was frustrated and didn’t understand why God would bring her here to be TJ’s caregiver just to sit in a hospital day after day with him, but after TJ’s death, she was able to look back and see God’s loving hand orchestrating her move back home at just the right time so she could spend every single day of the last three months of TJ’s life with him. What a blessing she had been given from the Lord.
There are many times when we do not understand what God is doing in our lives. And quite frankly, sometimes it looks like He is doing everything wrong and we could do it better if given the opportunity. When everything around us starts to crumble, we must resist the human urge to grumble against Him and trust that He is always at work, that He always has a plan, and He always has our best interest at heart.
God loves us, and even though we may go through incredibly painful events in our life, if we choose to focus on Him and not on our circumstances, we will see His loving hand guiding, directing, and providing for us.
“Faith is trusting in advance what will only make sense in reverse.”