8 Ways to (Kind of) Prepare for Your Child’s Brain Surgery

Wouldn’t it be nice if an actual list or blog existed to prepare you for something like brain surgery?

Over the past two years our family has fumbled our way through tuberous sclerosis complex and all the crazy curveballs it can throw. From seizures to hospital stays, to therapies and now brain surgery. I’ll be honest though… I never expected to be having to prepare for brain surgery. It wasn’t something I’d put on my radar. Was I aware that behavioral problems may arise? Yes. Was I aware that seizures could wreck havoc on our daughter? Yes. Was I knowledgeable about most anti-epileptic drugs (AEDs)? Yes! I’ve advocated for our daughter, researched for our daughter and gone blue in the face fighting for resources for our daughter. But I never imagined being here, sitting on the phone hearing the words, “Our next step is brain surgery.”


It felt like we were being told of her diagnosis all over again. The words stung. I felt all the warmth in my body fall to the floor. Images of her having her brain opened up flashed in my mind along with images of her in a hospital bed, being unrecognizable to us. There’s something haunting about seeing a tiny child in a hospital bed that engulfs them. It doesn’t fit; they shouldn’t be there.


It’s been a few months since we heard those words, and we’re now nearing the surgery date. Nothing has changed as far as my fear. I still feel as if we’re blinded to what will truly happen once we walk into that hospital. My hope and focus is on my desire to not be constricted by the walls that this disease has put around my family. Hope is around the corner; I can see it and feel it on days when clouds aren’t weighing me down.

So here we are, a little over a month to go before we go down a less-than-inviting road without a map. We have no clue what to expect; we only lean on the small percentage of families who have traveled this road before us. We will lean on them until we have our own story to tell.

But if I had to make a list of how to prepare it would look like this:

1. Lean on your fellow surgery parents

2. Don’t get caught up in the what if

3. Pray… alot

4. Expect great things to happen after surgery

5. Trust in your ability to parent

6. Take a deep breath

7. Show your child love you never new possible

8. Allow yourself a good cry in the shower

For now, this is how I will prepare… if there is even such a thing.


Find this story helpful? Share it with someone you care about.

Related to Tuberous Sclerosis Complex

Why I Want Loved Ones to Stop Suggesting I Have Another Baby

“You should have another baby!” Almost four years ago to the day, when I gave birth to my son, I didn’t have any plans on having another child. Fourteen hours of labor was enough for me. We would be content with an only child. As any mother knows, soon that pain from labor disappears and [...]

To the People Who Watch Our Special Needs Family From the Sidelines

Last week, I picked my son up from preschool and lingered on the playground for a bit, just watching him play. I watched the kids swirl around him in dizzying circles, up and over the playground structure, around the sandbox, running with effortless ease. Laughing and calling to one another in high-pitched toddler squeals. Kids, [...]

A Letter to My Best Friend’s Voices

You know me well, but I hardly know anything about you. When you first arrived, I didn’t notice you at all. I didn’t know you were seeing everything she saw and hearing everything she heard. I thought there were two of us, but now I know there are more. Had she not told me you [...]

Why Media Stories About People With Down Syndrome Frustrate Me

I’ve read stories about children with Down syndrome landing modeling contracts. I watch individuals with Down syndrome on the screen in acting roles. At conferences, I listen to adults with Down syndrome give speeches about their lives. These are good stories. They change people’s perspectives on Down syndrome and help fight stereotypes. This matters to [...]