May Institute

Parent to Parent: Making Sense of a Catastrophic Brain Injury

03/21/12

 
 
 
 

More than three years after surviving a traumatic brain injury during a high school football game, 20-year-old Zack McLeod, a student at the May Center for Education and Neurorehabilitation in Brockton, Mass., had the opportunity to meet his hero – NFL phenom Tim Tebow.

The pre-game visit took place before the match-up between the Denver Broncos and the New England Patriots. The meeting was made possible through the Tim Tebow Foundation which focuses on helping those going through difficult times – a calling shared by Zack and his parents, Harvard University chaplains Pat and Tammy McLeod.

The couple, married for 29 years, recently shared thoughts about how Zack came to be part of the May Institute family, making sense of catastrophic loss, and the strategies that have helped to keep their marriage and family strong.

The following are excerpts from our conversation with Pat and Tammy about this very personal journey.


Q: How did you find May Institute?

Tammy:
When Zack was ready to leave Spaulding Rehabilitation Hospital following his brain injury, we were given a list of places to contact. We went with a local school official and visited each one. Distance from home was an issue, but May Institute came so highly recommended we knew we had to consider it as an option.

Pat: I wanted not to like the May Center – it was too far away – and wanted to rule it out. But after the first visit, our decision was made.

Up until the time of our visit at May, my only connection to children with serious disabilities was during a trip we made to South Africa. I was preparing myself for something similar to that experience, which was overwhelming. When I walked into the residence we visited, what I saw and felt was only peace and warmth. I could easily envision staff members as being people Zack would have hung out with before his injury. The students living there were so sweet and seemed genuinely happy. The school absolutely defied any depressing stereotypes that exist out there.


Q: What kind of progress has Zack made in the last three years since he arrived in 2009?

Tammy:
Academically, he has retrieved his former math skills, and he is much more alert and more socially engaged. His physical recovery is coming back much more quickly than his short-term memory, field of vision and speech, though he understands everything. And Zack is running! In fact, he made the Special Olympics soccer and basketball teams.


Q: Is Zack aware of how far he has come since his injury?

Tammy:
Even though Zack has all his long-term memory, his short-term memory is so limited that he truly lives in the moment, which psychologically is a pretty good place to live right now. He isn’t able to think about what he’s lost or be upset about what he can’t do. Nor is he weighed down with fears about the future, worries or regrets.


Q: What do weekends look like for Zack?

Pat:
Coming home is always a highlight for Zack He is a total blessing to be around and very life-affirming, but it still requires a lot of attention to keep him safe.

Zack’s weekends are typically very active with speech and water therapy. He still enjoys watching sporting events at his old high school to keep his ties to the community. Most importantly, he stays involved in our campus ministry meetings and participates in Sunday worship.


Q: What has stayed the same, and what has changed for your family?

Tammy:
Zack doesn’t live with us anymore. He will probably never go to college. We don’t know yet if he can work. He will most likely never be able to live alone. He can’t speak. But, what he can’t express in words, he communicates through smiles, hugs, and high-fives that clearly convey his deep love. So while everything has changed on the surface, the core of our family, and our relationship with God, have really not changed.


Q: How have you been able to make sense of Zack’s injury?

Pat:
I believe Zack’s injury is part of a larger story that is still unfolding. Even though it is painful, there have been moments along this journey that have given me great confidence that God is in control and he is going to bring some good out of this.

Tammy: I agree with Pat. God mediates his care for us through Scripture and prayer, as well as through the people around us, including the people at the May. We have been really touched by their kindness and the care that they have showed to Zack and our family, as well as their professionalism. They are excellent at what they do.


Q: What has been the hardest challenge you have faced?

Tammy:
The most surprising challenge I’ve had to face is dealing with the amount of pressure that something like this can put on a marriage and family. We greatly benefitted from counseling where we learned that the grieving process divides people because no two people grieve in the same way or on the same timetable. We also learned to be gentle with each other.


Q: In addition to your faith, what coping strategy has been the most helpful to you?

Tammy:
Self-care. I knew that, in order to be there for Zack in the way he needed me, I needed to take care of myself. I realize it’s very hard for a lot of people, especially women who often put themselves last, to get to that mental place. But I knew I needed to physically work out every day, and sleep and eat well. I needed to take care of my spiritual life, as well as my emotional life. I needed to connect with other people to stay whole for Zack, my marriage and my other children.


Q: What have been some of the most memorable moments you’ve experienced during Zack’s recovery?

Pat:
There have been so many poignant moments for us. When we were in South Africa prior to Zack’s injury, we met a young orphan with severe disabilities who was very withdrawn and afraid of people.

One day they held a talent show where children and staff sang and performed. We were on stage. One of Zack’s passions has always been his love of music, and he was playing the guitar and leading us in song.

This young boy struggled to walk down the aisle, and eventually made his way onto the stage – he wanted to help Zack strum his guitar. The energy level in the room at that moment was nothing short of miraculous.

Fast-forward eight months later at the May Center’s own talent show. It was like a déjà vu experience. The curtain opened up and all the elements were the same: Zack was in the center of the stage, guitar on his lap, and he was playing the chords to a worship song. Someone else came across the stage and started strumming his guitar for him, and the energy in the room was absolutely electric. The only difference was that the role players had been changed. Zack was now the person with the disability and it was the other person, a staff member at the May, who was strumming for Zack who could no longer strum himself. In both contexts we watched our son bridging a gap between “ability” and “disability” in a manner that was astounding. It was a sign to me that Zack had found a place between the two worlds.

Tammy: After four weeks in the ICU with Zack making no sounds, one night when I was singing his favorite worship song, he began to sing along. We knew his soul was well.


Q: What have you learned from this journey?

Tammy:
Intellectually you know you’re not the first person to ever experience catastrophic loss, but sometimes emotionally you can feel very alone, like you are the only one going through something like this. Your perspective changes pretty quickly when you come to realize just how many people are suffering from so many similar situations. I also realize more now that some people do not like to face pain; they would rather have you sugar-coat your situation so they do not have to feel uncomfortable. The hard stuff is too difficult to handle.


Q: What is important for those on the “outside” to understand about your needs during the recovery process?

Pat:
I remember about a year after Zack was hurt, I found Tammy crying in the parking lot after speaking to a professor she knew. She had only talked with him for about two minutes, but what he did was pretty profound. He acknowledged her pain, and not just Zack’s accident and suffering.

It means a lot to just know that other people truly do feel our sorrow. It makes it easier to connect with others when they don’t try to make light of it, or fill in the silence. It almost means more when a person doesn’t try, and instead just shares the silence, or says something like, “Wow, that must be really hard.”


Q: What words of encouragement would you offer to other parents, who have children who have just suffered a brain injury and just beginning the recovery process?

Tammy:
Don’t isolate yourself. Get all the help you possibly can get. Spiritually, draw support from your spiritual resources. Emotionally – get support from friends, and from counselors to support your marriage and family as you move through the grieving process. And physically – take care of yourself.

Pat: A lot of people care about you and are going to want to help you. You can benefit others by letting them help you, so don’t turn down help from anyone who’s willing to give it, including financially.

I also totally agree with Tammy in the idea that any steps you can take in the direction of your spiritual growth, and your emotional and marital well-being, are important. Invest in the marriage; try not to collapse your whole life on the child with the disability. Realize that by caring for each other and for your other children, you are, in turn, giving the child with the disability the best possible care.


Q: For parents who are currently looking for resources to help their child, what factors helped with your final decision to come to about May Institute?

Pat:
The staff was definitely one of the reasons we chose the school. Even before the final decision was made, members of the staff came out to Spaulding to learn more about Zack to better understand his needs. We are in a campus ministry so we know that it takes a great organization to be able to hold on to young people with that kind of dedication. Knowing that your child will be with people who have such positive attitudes – which we think is characteristic of May staff – makes a real difference when making this kind of decision.

We also knew by watching the students with their teachers at the May Center that Zack would be challenged and would have opportunities at May that we didn’t see at the other places we visited. And my fears of being separated from Zack by a long car ride faded away as we were getting ready to head back home after our visit, when we turned to see a commuter rail pulling into a stop less than 100 yards from the residence. All the pieces just fell into place.