The Ten Things I Learned From My Daughter’s TBI
My entire world was turned upside down five years ago when my daughter sustained a traumatic brain injury (TBI) after being hit by a speeding car when she was crossing the street. I had no idea how much my life, as well as my entire family’s life, would be changed forever in a matter of seconds. I also had no idea how much I was about to learn…
Although I have learned and continue to learn hundreds of new things on this journey, I will mention my top ten for starters in the hopes of helping others along their personal journeys.
1. When to Advocate
While my daughter was in the PICU in a coma, it was a difficult time as my husband and I had to give over most of our control to the doctors responsible for her care. This was not easy!
However, there were times when we needed to insert ourselves into the conversation when it came to her treatment plan. We knew our daughter the best and were best able to identify some of her needs. Sometimes I felt that my “Mama Bear” instinct was necessary.
For example, there was one evening when the nurse was attempting to take blood from my daughter but was having a difficult time. After a few minutes of watching tears stream down my daughter’s face, I put an end to the torture and requested that they call for a phlebotomist. The phlebotomist came and was able to take the blood with ease.
2. Take a Quick Break
I remember feeling so removed from the rest of the world while my daughter was lying in a coma. It felt as if the world was continuing to move around me while I was standing still. “Life goes on” as they say. However, sitting in a hospital room while your daughter is in a coma really removes you from this. Which is why it was so important to take breaks and step out, even if just for a few minutes.
I remember my sister would come to visit and force me to take a walk in the summer air just outside of the hospital. I was reluctant but it was a huge help to feel the warm, clear air and feel somewhat connected to the world outside of the PICU.
3. Pool Your Resources
Looking back, I remember how important it was to pool the resources from other family, friends, and professionals in order to come up with the best treatment plan for our daughter. We were fortunate to know other physicians in the field who helped us decide to have our daughter transferred to another hospital for better care.
Additionally, our family and friends were a huge help with the care of our other child. Even if it’s not in your nature to ask others for help, this is one of those times when you have to push those feelings aside and just do it!
4. How to Ask for Help
Taking a lesson from above, it’s important to rely on and accept the support and kindness of others. This includes people that you really don’t know well but that want to help.
There were so many details that I had not thought of as life went on in what felt like the outside world. My younger child needed a ride to and from camp, my husband needed to return to work, we needed food in the house, bills needed to be paid, etc. We were very blessed that our friends set up a Meal Train so that we had dinner every night. Food was often delivered by people in our town whom we had never met. These were things that made life just a bit easier for us.
5. Do Whatever You Can
Once my daughter came out of the coma and arrived in rehab, she had to learn to do everything again - talk, walk, complete activities of daily living, etc. She definitely needed me or her father to assist with these tasks when the nurses and therapists were not available. People would comment to me “I don’t know how you do it.”
I felt that this was not a choice. How could I not help and support my daughter as she worked so hard to relearn all of these things that kids her age, and their moms, took for granted? You just go into mom-mode and do what needs to be done!
Having a background in the allied health professional field, I was probably a little bit better equipped to figure out ways to help my daughter gain skills that had been lost, alongside her therapists. That was a help but I feel that my role as mom was the first line of motivation for me.
6. Educate Others
Once my daughter came home, I had to learn how to integrate her, as well as myself and my family, back into the outside world with our “new normal” world. I found that I really needed to educate everyone in our world including family, friends, other parents, educators, etc. Again, I did not sign up for that role but it needed to be done in order to support my daughter in her “new normal.” As an aside, I don’t really like to use the word “recovery” because I feel that it implies that my daughter is back to the way she was pre-injury. I have accepted that this will never happen but she is still capable of living a happy and fulfilling life.
Educating others about TBI and my daughter’s needs was especially crucial when it came to the staff at her school. This meant that I really had to know my stuff in order to convey it to others. I would also have to push and sometimes make a stink in order to get my daughter the support she needed in school. As a result, I reached out to our state brain injury association who was instrumental in providing in-service training for the teachers at my daughter’s school. In addition, they really helped educate me about my daughter’s educational rights.
7. Stay on Top of Educational Needs
As the process of having my daughter rejoin her school moved forward, I made sure to be super vigilant as to how she was feeling about herself. I noted that her self-esteem was very low and her teachers were not helping support her. In many areas, they were using the same learning approaches that they used with the typical learners in her class. As a result, I had to advocate for her via the principal of the school. This involved more education related to TBI. It took a lot of energy and perseverance on my part but it just had to be done.
I learned that I needed to be the voice for my daughter as she was learning what she needed and how to advocate for herself.
8. Focus on the Positives
Along the way, I learned what was important to focus on and what was not worth stressing over. I forced myself to look at the big picture in a positive light versus picking apart all of the little things that had changed about my daughter. As much as possible, I tried to focus on the fact that she was with us and continued to be the sweet and kind person that she always was. Some days were and are harder than others but I always try to remind myself of that.
9. Keep an Open Mind
I learned that you cannot predict how situations might unfold - they might go better or differently than you imagined in this “new normal.” It just doesn’t help to have preconceived ideas or conclusions.
For example, maybe a social activity with my daughter and her friends will end up being positive where she can keep up with the conversation or the activity. These things are unpredictable and it’s best to just keep an open mind. Sometimes that’s easier said than done but it’s worth a try!
10. Learn from Your Child
Last, but definitely not least, is what my daughter has taught me. She has taught me about grit, resilience, drive, and positivity. I have never witnessed a child with such will to do her very best in everything she tries. Despite all of her struggles, she has and continues to face them head-on. Yes, she has tough times where she’s sad about things that are now a struggle for her that once came so easily. However, she moves along and fights for all that she strives to achieve.
She really is my role model and educator related to what’s possible to accomplish.
Written by Danielle, who is a mother of a daughter with a TBI. Danielle participated in Alongside’s Wellbeing Group and has now been trained as a facilitator to support other families in the future.