Ha... Wouldn't that be nice if there was an actual list or blog to prepare you for something like brain surgery?
Over the past 2 years our family has fumbled our way through tuberous sclerosis complex and all the crazy curve balls it can throw. From seizures and hospital stays, to therapies and now brain surgery. I'll be honest though...I never expected to have to prepare for brain surgery. It wasn't something I had 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 AED's? Yes! I have 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 are 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 laying in a hospital bed being unrecognizable to us. There is something very haunting about seeing a small child laying in a hospital bed that engulfs them. It doesn't fit...they shouldn't be there.
Its been a few months since we heard those words and we are now nearing the surgery date.
Nothing has changed as far as my fear. I still feel as if we are 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 this disease has put around our family. There is hope around the corner.. I can see it and feel on the days the clouds aren't weighing me down.
So here we are, a little over a month to go before we go down a road that is less than inviting and has no road 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.
If I were to have 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's
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 that you never knew possible
8. Allow yourself a good cry in the shower