(Preamble: It’s been 5 years since we went in for brain surgery. It’s been a long time since those very dark days. But sharing some moments in the “days in the life” of a mother of a brain cancer survivor child, five years on …. )
I’m sitting in front of a (new) teacher. I have been here so many times over the last three and a half years since the end of treatment. The words – “My son had Medulloblastoma, a type of brain cancer”, come out. I am so practiced at telling our story, even in Hebrew. The aim is to give background so they can think how to customize an appropriate approach for him. Their reaction is the same. I have seen it so many times before. Then I add another dynamic to the story and explain that he had Posterior Fossa Syndrome (PFS) thrown in. They don’t even understand Medulloblastoma (MB), let alone PFS. It’s OK. I definitely hadn’t heard of it before all this either. And I understand that there are many doctors who still haven’t.
Another time, I’m sitting with my son, in a meeting full of teachers, educational “professionals” and school staff. They are the ones that are supposed to help me decide what the best way is to help my son and move forward. To give him the best chance. Yet they land up doing the opposite and do more damage to my son’s self-esteem than they could possibly ever imagine. My son walks out of the meeting and says – I’m never going back. And he doesn’t.
I have so much respect for teachers. My mother was one for more than 35 years, giving of herself to her students. They loved her lessons, and still call her Mrs. G to this day, despite the fact that she retired long ago. However regular school teachers are not taught how to educate a kid that has had to deal with childhood cancer. They are not taught how to approach their education once they’ve had two or so years of their childhood and schooling removed. They’ve also never been trained how to approach kids who’ve seen death in their face, and fought more battles in their short lives than these teachers could ever imagine.
The educational framework, at least where we are, is outdated. I have no doubt that it has not changed since I went to school 40+ years ago. It is built for kids that fit into a box (or two or three but not more). Not many boys at the age of 13 can sit looking at a teacher, a blackboard, a white board or anything else and concentrate from 8:30am until 4:30pm, even with some breaks, let alone a MB kid. In most instances that is a full adult workday. In seventh grade, my son just wanted to finish school at a reasonable time, have time to play soccer and not feel completely exhausted, always.
Our Fairy Godmother comes through a random email address on the city’s website (yes, she really was a fairy godmother as soon after this story, she left her position). Having spent years and years as a headmistress of a special needs school, a daughter of a neurosurgeon and someone in charge of all the highschools in the city, she understands the many issues that until now, all the education staff had missed. She sits with our son, and after a long meeting, says, “Your son is intelligent. He just needs the right school that is prepared to fill in the (many) gaps. The catch is”, she says, “there is no school like it in the current religious framework you’re in”.
We’re stumped. But we trust that she can help, and she does.
Another day, a few months back… I meet the mother of a kid in my son’s class. It’s the end of elementary school. This kid has been with mine since first grade. A supposed “friend” of his. The mother knows my son’s journey, he’s had to have an aid in class, her kid benefitted from that aid too. She asks what high school he is going to. She tells me that she hopes now that my son is finishing elementary school and going to a school where “no one knows him” that he can put cancer behind him. That he doesn’t have to “use it” to get “privileges”. I stare at her in complete shock. At this point, my insides turn, and I fight the very real reflex to punch her in the face. With a black belt in karate, I know I could. Instead, I smile meekly at her and just turn away. Clearly she was reflecting onto me what her own child communicated to her.
I wonder how many of the other kids from his class, or those that he meets, feel that my son is “lucky” he gets to have so many “privileges”.
The “privileges”… like the one that we received in the mail not so long ago, without an expiry date. In the last few years we’ve received two with a “time limit” set to when he was supposed to “be OK” and not need the special “privilege” of parking in a disabled parking bay. Every few years I have to go to evaluation meetings to renew it. But I guess now I don’t have to go anymore. The one we have, has no expiry date. None.
Yes, the “privilege” that we’d give up in a heartbeat.
I take him to his weekly Parkour training. I sit on the sidelines. He doesn’t want me to come in and watch him. I sit with my laptop and try to work. None of the kids in his class have any clue that just a few years ago he couldn’t walk, or talk, or sit upright, or do anything. His instructor carefully guides him with complete kindness, making every effort to treat him as he does like every other kid, yet looking out for his still fragile frame as he leaps from gymnastics vault box, to gymnastics vault box. This is my kid that could do less than a newborn baby. This is my kid that will forever have his disabilities that give us the “privilege” of parking in that bay. His balance will never be the same as the part of the brain that controls that function, is sitting with mounds of scar tissue and cavernoma that will forever remain. I peek in at my determined miracle. Five years later he ignored the memo from the doctor that said MB kids shouldn’t attempt Parkour.
He comes home and we’re sitting at the dining room table casually chatting. He’s looking at the foster dog we are looking after and explains to me, “Mom (Ima), some people are given an easy life and make it hard, and some people are given a hard life, and try and make it easy. I was given a hard life and try and make things easy.”
I’m sitting, the night after his fifth “new birthday”, listening to a zoom ceremony (crazy Covid-19 world) from his new school. Next to me, my son is getting a Certificate of Achievement. The teacher hints to the mass of parents that he has had a complicated journey to get to where he is. They are rewarding him tonight for “his learning, persistence, investments in studies and high achievements”. I’ve had a preview of his half-year report card. It is indeed an achievement. He doesn’t want to speak. He doesn’t want to say anything. He takes everything in.
I hold back the tears. I feel so lucky we have found the right place for him. It wasn’t so long ago that he felt so lost. And now he holds a certificate of achievement from his new school, from the amazing staff and their unique approach that don’t expect any kid to “fit into a box”.
Yes, he was given a hard life.
And he does everything in his power to not only make things easy, but also good.
