I frequently get asked for advice about recovering from brain surgery while parenting. Both recovering from brain surgery and raising a child can be daunting and challenging tasks individually. Combining them creates a whole new level of difficulty. This is a really large topic that I will do my best to encapsulate.

However, I want to take a moment to focus on the fact that these are really personal and individual topics. My experience may look nothing like yours. As someone recently said to me, brain surgery is truly a situation of, “Results may vary.” Every single family also functions very uniquely. Something that made sense in my household may not be a fit for yours. How many children you have, as well as their ages when you are undergoing brain surgery, can also really modify the experience.

When I was preparing for surgery, I purposefully withheld most of the information from my child. She was just a toddler, and I did not think details would be beneficial. I just told her that I needed to go stay in the hospital so the doctors could fix something wrong in my head. I let her know she would be staying with both of her grandmas while I was gone (for which I am eternally grateful). I warned her that when I came home, I would have wounds that would need to heal and that she would need to be really gentle with me. Since she was so young, we were really able to control the narrative. She took her cue from us.

I chose not to have her visit me at the hospital. I ended up with a longer stay of ten days, as I had a cerebral spinal fluid leak. It was hard not to see her for that long, but I really felt that the hospital would be scary and that I would not look like me. I do feel like I made the right choice for our family.

When I returned home, our reunion was very joyful. The first week, my husband was home with me and helped care for both of us (he is a saint). After that, my parents helped, or she went to childcare for the next couple weeks. I needed lots of rest. She was also still in diapers, and I could not lift her. So until I was able to get down to the floor and back up easily, I couldn’t have responsibility for her. I really think it imperative to have help with kids at least two weeks after brain surgery, but four weeks minimum would be my recommendation.

I think the hardest thing for me was feeling like I was a failure as a parent because I was going through this dramatic health crisis that had a huge impact on how our family operated. As a parent, you want the best possible life for your child. I definitely did not feel like I could be the best version of a parent in the aftermath of my brain surgery. That made me feel guilty and useless. I was worried I was a burden and creating trauma in my child’s life. I worried my limitations may be depriving my child. However, I learned this line of thought was faulty. Children are remarkably flexible and resilient.

At the time of my surgery recovery, I was amazed by how much my child learned and how much  empathy she cultivated. I do not typically think of two year old children as having much capacity for empathy. I remember one day I was spending time with her, and like most days after brain surgery, I was quite tired. She noticed my exhaustion, and though she historically liked naps as much as any toddler (which is to say, not at all), she asked me to lay down on the bed with her to “play nap.” She was caring for me in her own way. I was just blown away by how quickly she learned to be gentle, to crawl on my lap because I couldn’t pick her up, and to remember to be quiet. She also learned to project and enunciate so I could understand her better with my hearing loss. When she started preschool the following school year, every teacher commented on her amazing verbal skills.

My child was just 2 years old when I had my surgery. It’s now been ten years since I had my operation. I have had a chance to see how she has grown and felt over time, and mom having had brain surgery is just normal life for her. She isn’t upset to discuss or reference it. Mom having a deaf ear is like mom having green eyes, just a fact. She does not exhibit any distress when it is brought up and has no problem sharing the story with her peers.

More recently, I had a bad health year with surgeries unrelated to my brain tumor, and I saw how my needing help gave my family growth opportunities. My kids learned all sorts of chores they had never done before because I couldn’t do them and needed the help. They stepped up and took on new levels of responsibility. They also appreciated being given tangible ways to help. It’s definitely not at all what I would have chosen, but I appreciate that growth and connection can come out of these difficult circumstances.

Your children take their cue from you. They learn from watching your behavior. This is an opportunity to show them what resilience looks like. It’s healthy to realize that bodies don’t always function perfectly. It’s ok for your kids to see you face challenges and cope with them. They will likely face health problems or other difficulties in their life and this is time to model how to handle those hard situations.

Yes, it’s really hard to be in recovery and also have to parent. It is a lot to manage. It makes it harder to prioritize yourself, which is really important for healing. But brain tumors never seem to show up at a convenient time. I also felt that my daughter gave me a positive reason to get out of bed each morning and keep fighting to regain my life. She grounded me, and helped me remember all the small joys life has to offer. She would get so excited to eat a bowl of stew or walk down the road and find a butterfly. I desperately needed that mindfulness and that reminder that life isn’t just all awful medical procedures. Sometimes a dose of reality like a diaper change can be just the ticket to get you out of a spiral of negative thoughts. She was the author of so many of my happy moments in my recovery, and I am so grateful I had her love along for the journey.