Embracing the Journey: Parenting a Child with a Brain Injury

By Kelly Lang, BIAA Advisory Council Member

No parent anticipates the words “brain injury.” The uncertainty, the agonizing wait. Yet, it happens, leaving families adrift in a sea of medical jargon and unanswered questions. Doctors offer no certainties, just a terrifying wait.

This is a reality for families daily, plunged into a nightmare with little guidance. Even after the initial improvement, the journey is far from over. Families grapple with special education, therapies, and a “new normal” that’s often far from it. Support systems dwindle just when they’re needed most, leaving parents overwhelmed by insurance, school, and the constant, unpredictable nature of brain injury. Every milestone is hard-won, every symptom a potential red flag.

How does a family cope with so much uncertainty? It may sound trite, but the answer is one second, one hour, and one day at a time.

In the beginning, we sit beside our child in a hospital. For some of us, we’re hoping they will wake up from a coma. Once they are awake, we wait for an assessment of their physical, emotional, and cognitive abilities. Recommendations are made, but it is up to us to make the right decisions for our child and family.

Parents have so many questions but find it difficult to find the “right” answers. There is a common saying in the brain injury world: “If you’ve seen one brain injury, then you’ve seen one brain injury, because no two are alike.” This simple saying is accurate. Therapies that work for one may not help another. There is a lot of trial and error while searching for a treatment that works best for the individual.

The age of the child at the time of injury also plays a large part in the recovery process. If a child is injured when they are under 5 years old, their recovery may not be the same as a child injured at 15. There are so many factors to consider when searching for appropriate care. Brain injuries are dynamic, and many do not fully recover.

Finding the Right Support

It is important to get a team of professionals that can help guide you along the journey. When my daughter was young, I kept searching for a gatekeeper – someone who could hold all her medical files and information, and research alternative therapies and medical specialists. I never found one, so I became the gatekeeper and the navigator of her care. Parents know their child best and have a special intuition or gut feeling of what is most appropriate. I always recommend, if it doesn’t seem to be working, then look elsewhere or seek out other options.

Building a support circle consisting of a medical team, educators, supporters, and family will be imperative as you move forward. It is cliché, but it really does take a village of support. Lean into them when you need extra resources. Ask as many questions as possible.

Parenting a child with a brain injury can be an isolating place, as you are focusing a lot of energy on getting your loved one the services they need and deserve. Many of your friends and family will not understand all that you are dealing with, and it is helpful to find or build a support network you can rely upon. There will be days you need assistance with childcare for your other children or getting dinner for the family. When that happens, seek out help as soon as possible. I did not do this enough. I wanted to be Super Mom, and it didn’t always work out so well.

This community of support will rally around you in times of need, and you will be able to give back to them once you and your family are in a more stable environment.

Brain Injury Through the Years

Each season will bring about different challenges and victories. Sometimes these occur simultaneously, but don’t forget to celebrate the victories. It is important to honor them and give them the glory they deserve. Over time, the family will need to heal as well. It’s a shock to everyone when a loved one sustains a brain injury. It was approximately 12 years into my family’s journey before a medical professional asked me how I was doing. I burst into tears because she was showing me empathy and said, “You have been through so much and have done everything you can for your daughter.” It shouldn’t have taken so long for someone to acknowledge our pain.

Once a child sustains a brain injury, there is a time of adjustment for the child, parents, and siblings, and it takes time as the family recalibrates and adapts. Seek counseling as you deal with a lot of struggles and grief. Grief for the child you lost. There is an ambiguous loss as well. Your child is still here, thankfully, but they are different and require intense care for a while. Your dreams for them may be altered. It is alright to grieve the loss.

American writer Joseph Campbell said, “We must let go of the life we have planned, so as to accept the one that is waiting for us.” I think his quote sums up living with brain injury. We learn to let go of the past and embrace our future because there are good things on the horizon.