No One is 100% OK, Ever
I belong to a group of “normal, regular” moms online – it is a huge group from all over that supports one another for having to juggle work and kids and the hardships of daily life. As a mom, you may be the manager of your home, but then you go to work and still have to manage someone else’s business, or run your own. There are also always kids to feed, clothes to launder, food to buy, homework to help with and after school activities to carpool to. And these are just the basics, without complications.
Add a cancer kid, or a cancer survivor kid and the “daily grind” takes on a whole different meaning. When your kid is in hospital, you become this expert juggler. You switch roles constantly from being a mother of a cancer kid, sitting by his side and answering to his every request, to coming home and being a mom to your healthy kids – with regular problems and your “normal” life outside the hospital. When your kid finishes treatment however, you kind of have this wishful thinking that you will just automatically, slowly switch back to just being that mom to healthy kids again, juggling the usual daily run around.
There are times you can almost make yourself believe that you are just this regular mom again. The “normal mom” who “just” has to juggle a PR campaign while preparing her son for two MRIs, several days apart, one to his head and the other to his spine and both under general anesthesia. The “normal mom” who has to fight medical bureaucracy and still try to be on top of everything at home too (not really succeeding) just before the Jewish holidays and Jewish New Year approaching.
Over the summer though it did actually happen – for a while things were normal. We decided it would be a good thing to have a break from all rehabilitation therapies. Just like school stopped for the summer, his official therapies did too. Of course this didn’t mean that he doesn’t need them anymore, but after two and a half years of almost everyday of the week of having “something”, it was time to take a break. I needed it just as much as my kids did. In fact, he went to a “regular kid” summer day camp, with other children his age. He had his older sister with him if he needed any support, but he was ultimately on his own. And then, like any other “normal” family – we had a real summer vacation, where we packed suitcases and got on an airplane and went abroad. And for a short time it was amazing. I felt almost like a regular mom.
But it was not more than a week or so into the school year when he tripped at home and cut his lip from the inside, that my “normal” mom feeling slowly disappeared. A few days after it seemed like the lip had healed, I got a call from school. It’s “that call” from school that always makes me panic. Nothing wrong, the assistant said, but he was complaining that his head hurts and his face. Even if “nothing was wrong” I still dropped everything and rushed to school, and then a few hours later to the doctor. The cut inside his lip had turned to a cold sore, and it was making his one side of his face really painful and tender – still not something that made me relax.
A few painful days later he was fine, he could eat again and even went back to his normal cheerful self, teasing his sisters. And I breathed again thinking that perhaps now we would have a normal week. Wrong again. Sunday morning he woke up and couldn’t open his eye. It was swollen completely. “Take me to Ichilov mom” (where our oncology ward is). It wasn’t just me in a panic. Let’s go back to our pediatrician first, I said and see if we need to go to the hospital. (I didn’t feel up to schlepping an hour into a cancer ward that day!) She calmed him down and said it seemed like an allergic reaction. Antihistamines should help. And they did. A few days later his eye was back to normal and so were we.
When things are “back to normal” and you feel like a “regular mom”- you celebrate. It’s the most amazing feeling in the world watching and relishing in the realization of just how far he has come. Like last Friday – I was so excited as my son made the tiresome excursion into Jerusalem’s Old City at 4am, walking with his classmates on the old, uneven cobble streets, down, and back up all the stairs (the 100 of them), to the Western Wall where hundreds of others had gathered at 5am in the morning to recite prayers before the Day of Atonement. And then from there, a few hours later he went with his friends to watch his coach play football in a tournament game. He watched and also played. However the next day, after jumping around with his sister – he couldn’t walk on the balls of his feet. They were too painful. The day before had all been too much for him and he would need a good few days to recover – so much so that days later he had to cancel football practice. A sign that yes, there is still more work to be done at rehab. And this realization was just a little too painful for me, too.
As grateful as I am for where we are now, there are often times when I feel like I wish I could go back in time and just be that normal mom, juggling normal, everyday life problems and not have to deal with post-brain cancer issues or my own PTSD. But it is in those times that my own son, recovering from brain cancer says something so profound, like “You know mom, no one is 100% OK, ever.”
Tonight we head into the Day of Atonement and I realize that my son is really right. No matter who you are, or what you’ve been through, no one is 100% OK. And that is OK, too. It is all part of this thing called “life”. Everyone has their own battles and their own story. No mother is really a “regular, normal mom”. G-d has taken each of us on our own path, where we are going to fall, or stumble, or even break some bones. We are going to have times where we feel completely overwhelmed and scared. We don’t always know or understand the journey He’s set us on and we have to accept that we may never understand. We can pray though that there will also be good days, days when we can feel “normal”, where we can relish in our achievements and take in the beauty of life. And when those moments come, we just have to make sure we take them in completely and celebrate.
