The brain tumor in my three year old baby, 2 years ago……
This is what is left today of his tumor free brain…..But, we had no idea what the deficits he would experience were, or how extensive the brain damage was. We spent 6 weeks in the Children’s Hospital after the brain surgery. John had to learn how to walk again, how to eat, how to swallow, how to grip things with his significantly weakened right hand. A custom brace was made for his right leg. It was a LONG six weeks. Loving friends purchased a special stroller for us to replace his wheel chair. They purchased a therapy bike to strengthen his leg muscles that was modified to hold his feet in place while he rode the bike. This was critical for him to be able to walk alone again. He was a hot mess when we went home. He had a 4 in by 4 in plate in his skull and was wobbling around with a walker. I had to walk behind him 10 hours a day to allow him to practice but not fall and injure his skull.
After being home for a few weeks, my best friend told me…John has 3-9 months to live. Its time to start living. Lets take the kids to a nature reserve and enjoy the end of summer a bit. We walked and looked at the animals and all of the rescued creatures. John used his special stroller and binoculars to enjoy the views.
After our excursion with the children, we decided to try out a restaurant that served local healthy food.
This would be a game changer for me, where I found my voice and advocated for my sons rights as a battle weary cancer survivor.
We were seated by a waitress and made orders for ourselves and our children. John was excited to be with his friends after two months of lonesome absence of friends. He was a bit louder than the other kids, but not by much. The manager repeatedly came to our table and asked if everything was ok. Repeatedly. Over and over. I became painfully aware of the manager’s greater message. Your child doesn’t fit in here, are you finished already??
I slowly absorbed it. I asked my best friend if she would start my car and carry my son to his seat. I was going to pay the bill and would be out in a few minutes.
I then walked toward the register, credit card in hand. The manager was running the register. I said to her, “did my son make you uncomfortable?” “you asked us if everything was ok about 7 times in the last hour?” She replies with a smile everything was fine.
But, I wasn’t going to let her off that easy.
I said, “my son had a 7 inch by 7 inch tumor and a 3 in by 3 in tumor removed from his brain 8 weeks ago.” “he has brain damage and malignant cancer” “He only has 3-9 months to live”
Her breath caught in her throat and I began to see a welling of tears in her eyes.
I said, “today we were trying to make happy memories, this is our first time out of the house in two months.” “you made us uncomfortable and we felt judged by your hovering over our table asking if everything was ok, while gazing at my son.”
I signed the bill and walked away with a bitter taste in my mouth. That lady stuck in my brain from there on out. I was jaded by her being put off by my warrior. My son who almost died on the operating table. My son who’s cancer there was no treatment for because it is so rare. My son who fought hard to be physically half the kid he used to be. My little HERO, John.