Preparing My Toddler

This is somewhat of a joke. When I had my first surgical consult, I was aware that it was probably logical to have this lesion removed. My goal was to continue with medication, eliminate as much risk as possible to interrupt my daily life, and to proceed with the surgery when my son was much older. I assumed it would be a lot easier when he was bigger, could understand more complicated concepts, and generally needed to be held a lot less.

Unfortunately, I was not able to follow this plan. My seizures were not controlled by medication in spite of being on three different medication’s. Things continued to escalate and I didn’t feel safe taking care of my son. It was a horrible feeling, knowing that I couldn’t safely give him a bath, cook him food, or go on a walk without a fear that I could have a seizure, and he could be in danger.

It was because of this and, of course, not being able to fully do my job, that I realized my quality of life decline outweighed the risks of surgery.

This decision came on very quickly, and when I met again with my surgeon we scheduled the procedure to happen within three weeks.

So within these three weeks, I had to try to prepare my two-year-old, who just had a birthday, to try to gain some independence, and not rely on me holding him much for comfort and general life activities.

You could probably imagine that this was not successful.

Before my surgery, I did speak to a child life specialist, and a child behavioral specialist. If you couldn’t tell already, I’m very anxious parent, and my son means the world to me.

Child life told me that he has no concept of time and there was not a lot of that I could do in advance since he wouldn’t remember it, and it would not help him prepare. She suggested that right before the surgery or right after, we could try to do some play scenarios where we dress up a doll and and put a bandage around his head and talk about it having an “ouchie” and how we need to be gentle and loving.

She also suggested that before taking him to the hospital that we should do a FaceTime video so we could a little bit more of what to expect when he saw me in person.

A few weeks before my scheduled procedure, we noticed our toddler was fixated on his own well-being and kept repeating if he was ok. He would say this over and over again and wake up at night asking this question. I could tell that the decline in my health or maybe my own anxiety was weighing on him. He might have noticed my seizures, but I’m sure he didn’t understand. Or he noticed that we weren’t going out and playing like we used to or doing activities like we used to.

Because of this, our pediatrician suggested we talk to the behavioral specialist. She suggested that we make a story for him with real pictures to explain in terms that he could understand what was happening and that he was safe, and use pictures of our family. This is called a social story. I took pictures of our family during his birthday party two weeks before my procedure. I then printed this out with thick pages because he’s terribly destructive with books.

Of course, during these few weeks before my surgery, my happy, sweet toddler became a regular toddler developmentally. Something about the tension and anxiet,y I think, pushed him to have a few destructive behaviors. During these few weeks, he started hitting, throwing things at my head, pushing me away, and generally being very frustrated.

While, this is very normal. We were sad that was happening so quickly to my surgery. Also, that we didn’t think that it was possible to redirect him consistently so we would feel like he was safe with me during my immediate postoperative recovery. So this added a new element that we would have to overcome.