Mission: Almost Normal Childhood

Having young children, we’re always very conscious of what we say around them. We offer opportunities for them to talk and they have total freedom to ask any questions they want. We try to keep their day-to-day lives as normal as possible – homework, chores, lessons, etc. We don’t want them to worry or spend their days being anxious, we want them to live life and experience their childhood without fear of what might happen, what if… WE don’t even know, so how would you explain that uncertainty to a child?

They are pretty typical kids and siblings. They resist doing homework. They have messy rooms and leave their stuff all over the house.  They pester us to watch TV. They use their imaginations and create music, art, and cool dance moves. They fight and bicker about pretty much anything. They look out for each other and sneak in acts of love and kindness. They get silly and loud. They like to cuddle and read together. They throw fits when they can’t find the ‘right’ pants to wear on a cold morning. Pretty normal kid stuff.

But they’ve still seen their mom have seizures and be taken away in an ambulance. They’ve still seen their mom in the hospital with ~35 stitches in her scalp. They’ve seen their mom suffer through chemo and radiation, unable (or unwilling) to get out of bed some days. They know I have brain cancer and that it’s serious, though we’ve avoided discussing the ultimate risk of death. They’ve seen me going to Stanford for frequent appointments and taking a handful of medicine twice each day. They have gotten a little too comfortable with my memory loss and have learned to play it in their favor – well, at least the tween has tried.

While they lead pretty ‘normal’ lives, we can see the trauma and anxiety come through from time to time. If I pause in the middle of a sentence, I get a rapid, ‘Mom, are you ok?’ If I cough while I’m reading a story, I get a ‘Mom, are you ok?’ If I get lost in a thought, I get a close look-over and a ‘Mom, are you ok?’ My daughter often double checks that I’ve taken my medicine (after 2 alarms and text reminder have already occurred.) Occasionally, my son will tell me ‘that I’m going to live a very long time’ in our bedtime cuddling. I catch the hidden glances in my direction any time they sense something is out of the ordinary.

Unfortunately, a few people have made comments like ‘everyone with cancer dies’, which WE know is not true. Those who make these comments don’t think of the impact those four words can have since I’m not THEIR mom and they’ve not experienced what our kids have lived through in the last year. But to our 6 and 10-year-old it’s a scary thing to hear. It makes the fearful ‘what if’ come to their minds and we have to spend a few days talking them down from the fear and anxiety – to get them back to spending more of their time just being kids.

The brain cancer is perhaps a little harder for them to grasp, because it’s less visible. But the seizures are VERY real and VERY visible and VERY scary. Being able to talk about it helps, but sometimes it’s easier if you can write it down. This blog has been great therapy for me, and since my daughter also loves to write, I asked her if she’d like to write something about what it’s like to have a mom with brain cancer. She immediately said ‘yes.’ This is what she wrote:

It is sort of scary to have a mom who can have a seizure, but knowing what to do and that we have neighbors that will help makes it a lot less scary. It is annoying that we have to walk a lot of places, like soccer practice and home from school. I am still a little scared when I hear a siren. Now she has a special medicine or as I like to call it ‘miracle medicine’.

That ‘miracle medicine’ is Ativan. I got a prescription after my last seizure, which was a status epilepticus. I’m supposed to take it if I seize in an attempt to avoid another life threatening episode. We can only hope that the secondary seizure medicine I now take will work, and that potential emergency doesn’t happen.

A fire truck and ambulance came into the neighborhood last night after bed time. She called out for me and I had to reassure her that I was fine and they weren’t coming for me.

I feel like we’re doing a pretty good job of keeping our kids’ lives on track and ‘normal.’ We don’t coddle them or excuse any bad behavior, but it’s important to remember that they feel anxious and have experienced trauma too. Sometimes a little more patience and an extra hug are needed. Then they need to go finish their homework and clean their rooms, just like any other kid.