“I wish I could be sick instead of you.” This is what my 7-year-old daughter said to me seven months after the fateful day I slammed my head into an icy mountain. Since the words “traumatic brain injury” (TBI) became part of our family vernacular, I have sought information from research articles, books, docuseries, podcasts, doctors and other healing practitioners on how best to heal my brain. But until recently, it did not occur to me that I should learn about how best to help my child cope with my invisible illness, despite the fact she had been struggling with it from the beginning.
When you are thrown into the overwhelming world of brain injury, it’s hard to remember the important things that need your attention. In the early stages of my injury, my daughter’s footsteps on our hard wood floors sounded and felt like she was stomping directly on my delicate brain. I recall with shame the time I literally squirted her with a water bottle to make her stop throwing a loud temper tantrum at the foot of my bed. For months, I dreaded the moment she came home from school because it was so overwhelming to process her incessant chatter, constant twirling and desire to be close to my face where my eyes would not focus. I was so engrossed in my own pain and suffering that I was unable to recognize hers.
In the early months, she cried often. She suddenly did not want to go to school; she did not want to leave my side. She got sick often. She made “get well” cards and wrote letters to me about my concussion during school hours. Around the six-month post-concussion mark when our whole family felt devastated that I had not yet returned to “normal,” she really fell apart. Before bed, she was often inconsolable. My sweet, easygoing 7-year-old became like a moody, angry and explosive teenager overnight. Little things set her off. She said things like, “I wish I had a different life, one where my mom does not have a brain injury,” and she screamed, “All you can do is sleep, eat and rest!”
That is when my husband and I finally switched gears and started focusing on helping our daughter cope with my brain injury. Each of us started counseling with individual therapists. We began the arduous process of accepting that I have a chronic illness, that our lives and family dynamics have changed, and that we are in it together for the long haul. Parenting is challenging work, and parenting with a chronic illness is exponentially more difficult.
If you (or a loved one) are dealing with a brain injury or other chronic illness, here are 13 ways you can help your child cope:
1. Take the time to sit down with your child and explain your illness in a way they can understand.
We have told our daughter, “Mom’s brain is bruised, and it is going to take a long time to heal.” We have explained what might happen when I have a bad symptom day and discussed the different ways that I am helping myself get better. Allow your child to openly ask questions about your injury. Assure your child that he/she is not the cause of your illness. If it’s appropriate, reassure your child that you are not dying from your brain injury. I was driving my daughter one day when she asked me if I was going to die. I had no idea this worry had been weighing on her.
2. Read age-appropriate books together about parent illness.
We have several parent illness books in our library that we read together to help our daughter process her difficult feelings and understand she is not alone in her struggle. There is a wonderful book by Melinda Malott called “How Many Marbles Do YOU Have? Helping Children Understand the Limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia.” It provides a marble-in-the-jar analogy that is easy for kids to comprehend. I have crossed out the words “chronic fatigue syndrome” and “fibromyalgia” and replaced them with “brain injury” to help my daughter understand how my brain gets tired and overwhelmed and why I need to rest often.
3. Give your child extra TLC as often as you can.
He/she needs to feel secure and connected to you during a very confusing and scary time. When you have a brain injury, it’s likely you are unable to do the same things with your child that you used to do. Figure out what you are capable of giving to your kid and make that a priority. It could be a few minutes of close snuggling every night before bed, extra hugs throughout the day, a quiet activity together after school or a short walk in the woods. Be present with your child in those moments. I am no longer able to read chapter books to my daughter, something we used to love. Instead, we practice drawing, give each other home facials and massages and spend extra time snuggling before bed to connect. She also created a “love box” that we pass back and forth with special tokens like love notes, sweet treats and gems.
4. Allocate your sparse energy where it really counts with your child.
You have far fewer “brain bucks,” as my neurologist says, than you did pre-brain injury. Be smart about how you spend those precious brain bucks. If there’s a school event coming up that is important to your child, be sure to get extra rest and quiet time to build up your energy bank before the event. Bring your sunglasses and ear plugs, and make sure your child knows ahead of time that you may only last a few minutes. Plan for recovery time after the event. Try not to overdo it and go bankrupt. I went to my daughter’s breakdancing show and spent three days in bed afterwards. Although it makes us sad, I no longer attend her dance shows. Instead, my husband takes videos for me to watch at home.
5. Help your child identify their difficult feelings.
Be sure to validate those feelings. You can say things like, “you seem frustrated today,” “you must be so angry about Mom’s brain injury,” “it seems like you are feeling sad,” and “do you ever feel like it’s so unfair that Dad has a brain injury?” Find constructive and non-destructive ways your child can vent their emotions. We purchased a kickboxing bag that my daughter likes to punch and kick whenever she is feeling angry and frustrated. We also downloaded a great meditation and mindfulness app called Stop, Breathe and Think Kids.
6. Be authentic with your child about what you are feeling.
Kids are very perceptive and can tell when your words do not match your nonverbal cues. It may be very confusing to your child if you are not feeling well but you say, “I am fine!” Be honest and tell your child that you are sad you can’t make it to her recital or that you are frustrated your recovery is taking so long — whatever feels real to you. Verbalizing your feelings also helps them improve their own emotional vocabulary. However, don’t make it a habit to constantly complain to your child or share too much scary information. My child does not need to know I am worried I will never feel normal again!
7. Show your child you can be strong and resilient even in the face of adversity.
It can be very unsettling to a child when it appears that their parent is no longer sitting in the driver’s seat. Let your child know you are still there to protect him/her even though your brain is healing from an injury. Communicate the ways in which you are overcoming your illness and share your little victories with your child. My daughter knows vision therapy is dreadful and unpleasant for me, but I do my exercises every day because they are helping me get better.
8. Help your child accept that there is a new version of you.
My daughter and I were looking at a photo album together when she pointed to a picture of me and said, “There’s the old version of you. Now there’s a new version.” Isn’t it amazing how insightful our children can be? Post-brain injury, I am “Mom 2.0.” While we each miss certain aspects of Mom 1.0, we can’t change the fact that she is gone. So instead of dwelling on the life we used to envision, we are working on embracing a new family dynamic.
We are learning to be flexible and adapt to new circumstances. We discuss ways we have changed for the better and what we’ve learned in the past year. Now that I am no longer my previous “highly functional” self, we all agree that it’s more enjoyable to conduct life at a slower pace, to have more quiet time with fewer to-do’s and events on the family calendar. As Mom 2.0, I am more in tune with what is truly important to me (e.g. spending quality time with my child rather than keeping a spotless house), and I deeply appreciate little things I used to take for granted (e.g. being able to walk the dogs and take my daughter to school).
9. Practice gratitude every day.
Humans often tend to focus on the negative, and it takes a concerted effort to notice what is going well, especially with a brain injury. Like her mother, my daughter is a bit of a “Chicken Little.” It’s hard for her to appreciate that Mom gets up every day and devotes brain energy to making her breakfast when she is focused on the fact that Mom spends a significant amount of time resting in bed, unable to handle normal levels of sound and light. So we are both working on cultivating more gratitude in our daily lives. We’ve made a habit of naming three things we each are grateful for every night over dinner and one act of kindness we witnessed that day. Help your child see how many blessings you still have despite your brain injury.
10. Keep a journal together.
Journaling is a great way to help your child (and you) process difficult emotions, vent and see obstacles in a new light. It can also be a new way to bond with each other. My daughter and I started a concussion journal in a fancy new notebook. Together, we have made lists of fun things we can do while I am recovering, what she misses most about Mom 1.0, how she is feeling in the moment, things we are grateful for, and things we would like to do the following day. When she is feeling particularly sad, we encourage her to sit down with her thoughts and journal.
11. Allow your child to enjoy activities away from your brain injury.
Make sure your life is not all gloom and doom for your child. Find ways for them to still have fun and do the activities they used to enjoy. You might schedule or allow for some extra time at a friend’s house or have someone take your child on a special trip to a local amusement park. Try to incorporate a little fun into each day. I am no longer able to listen to music in the car, so we invented a game where the first person to see a specific animal earns points.
12. Consider taking your child to see a psychotherapist.
Your family is going through a hard time and may need some professional help. My daughter sees a psychotherapist once a week. Not only does she really look forward to those Thursday sessions, but she is noticeably more calm and able to articulate her feelings. The other day when I told her I felt sad that I couldn’t go to a party with her, she responded, “Oh well, sometimes these things happen in life.”
13. Practice self-compassion and let go of guilt.
By no means should you spend every waking second attending to your child’s needs. You need adequate time to rest, recover, reflect and reset. Pre-brain injury, I was already a harsh judge of my parenting skills, and post-brain injury, I feel terribly guilty that I am the cause of so much angst at home. But the self-criticism and guilt are not serving me or my family (it certainly doesn’t make me a better parent!) and I have to remember it’s not my fault I have a brain injury. According to Dr. Kristin Neff, author of “The Mindful Self-Compassion Workbook,” self-compassion means you are kind and understanding when confronted with personal failings instead of mercilessly judging and criticizing yourself for your inadequacies. I’ve found Dr. Neff’s guided meditations and exercises for self-compassion very helpful. Give yourself (and your brain) a break, honor wherever you are in your recovery, and practice saying, “I did my best today!”