Can you please give him an x-ray? I pleaded with the doctor. I know his oxygen looks good now, but he stops breathing, please, give him an x-ray. The ER doctor looked at me and with a condescending tone and says, “How about this, you tell me what I’m looking for and I will give your son an x-ray”. I put my head down in defeat, and said, I don’t know what you’re looking for sir, I just know something is wrong. I knew it was not normal for a baby to constantly cry and scream in agony when adjusting position while breastfeedings. But I did NOTHING because that guy had a degree and he knew better than I did. I will never forget that conversation, months later those words would haunt me as I sat in a University hospital room with a 3 1/2-month-old son, newly diagnosed with stage 4 Neuroblastoma (cancer).
Do you know what stage 4 even means? I didn’t!
His poor little body had cancer everywhere, including his bone marrow. I had plenty of time to think during our several hospital stays and the questions that always surfaced were, Why didn’t you fight harder & Why would no one listen? I struggled to forgive that ER doctor who turned me away, I struggled more with forgiving myself for not protecting my son. After getting past the shock of his diagnosis and paralysis, I made a promise to him to always speak up when things didn’t seem right.
Why didn’t I fight harder?
Fear. I didn’t know my rights as a parent and definitely didn’t understand my role as an advocate. Doctors go to school for years, I know they know more medically but they do not know our children as we do. We can tell the level of injury just by the tone of their voice when they scream our name. We can hear the sounds of sickness in the middle of our sleep as we pop out of bed to their rescue, we know when things aren’t right.
There are people in positions of authority that can be very intimidating and can make you feel as though you are overreacting. It’s ok to fight for the rights of your child, but that doesn’t mean to scream until you are heard. Be respectful, ask questions, share your ideas because after all, you’re on the same team. Sometimes you may meet a condescending doctor who will look at you in a certain way to make you feel small, but that is his/her issue. It takes courage to stand up to people with degree’s but at the end of the day, they are just people. Regular people who are flawed and make mistakes. Sometimes those mistakes are fatal, and other times they are caught the next day by a pediatrician. My son was diagnosed with pneumonia the day after that ER visit, the follow-up x-ray a month after he was hospitalized would catch the mass, which triggered the specialist at the university to do more testing that found cancer.
I know I’ve shared my son’s story so many times but his story changed my life. It’s hard not to mention him because through his life I was able to be brave, find my voice, and be a better advocate for him and others around me. I eventually forgave that doctor and myself, as Maya Angelou said, ” do the best you can until you know better, then when you know better, do better”.
There is a wealth of information and resources online yet parents still struggle with advocacy, not only with medical issues but within the school system. It was a circle of parents who created a support group where I was able to find encouragement. It’s our job to protect our kiddos, if something doesn’t feel right, reach out to someone for help.
Know your rights, click on the link below, or the next time you are at a doctor’s office ask for the patients’ rights and responsibilities pamphlet, read it, stay informed.
https://oregon.public.law/rules/oar_333-027-0080
When dealing with an IEP and 504 plan, Fact Oregon is a great resource, they helped me several times as I navigated the public school system. https://factoregon.org/
I kept the promise to my son and do so by making sure I’m well informed, but the information is useless without action!
Real Mom of 5 