A Mother’s Plea

I am watching my son slip away. Every day, I see the pain etched into his body. The spark in his eyes has faded, and I am powerless to stop it. No words can capture the heartbreak of standing by, knowing he is hurting, and being unable to help him.

Josh is my world,  my life,  my everything. To watch him decline while doctors dismiss his symptoms, offer only the bare minimum, and prescribe medications that strip away pieces of who he is, this is a weight no mother should ever be asked to carry. Yet, this is our reality. Doctors see my son, but they do not see him. They dismiss his symptoms, cover them with prescriptions, and call it care. My plea is simple: he deserves more than survival- he deserves his life back.

These doctors recognize the severe side effects of seizure medications, but they don’t care. Imagine sitting next to your child in a hospital room and hearing a doctor tell you it’s acceptable that the medication is causing brain damage—because “well, he was already disabled.” I have heard those words three times from three different doctors. They knowingly continue him on drugs that are harming his brain. They swore an oath to do no harm, yet they are hurting him.

Those choices have stolen his laughter, erased his joy, and stripped away the small, simple moments that once made our days feel whole. They have robbed him of the quality of life he deserves, and they have robbed us of the “normal” we once cherished. Our lives have been torn apart by decisions that promised healing but only brought devastation.

Our country offers no real protections for adults with severe and profound disabilities, leaving loopholes that doctors and insurance companies freely exploit. I understand that time with patients like Josh may not be “profitable,” but we are not talking about money—we are talking about a human life. A person who is loved and needed. A person who matters. No insurance company or doctor should have the power to decide who receives care, who is left to suffer, or whose life is deemed less worthy.

My son’s days are filled with meltdowns that can last for hours. He is in pain he cannot describe. He becomes overstimulated by the very things that once made him happy. He can no longer listen to music or play with his favorite toys. Instead, he stares at walls. He rocks and flaps so hard his joints snap, his heart rate spikes and sweat soaks his body. This is not life, this is torment. We once traveled together; now even a car ride is unbearable. Our world has been shattered.

I have explained all of this to doctors, over and over, only to be told, “This is just how it is now. Accept it. Move on.” That is easy for them to say—they get to walk away. Josh cannot. I cannot. Even when he has these episodes in the hospital, teams rush in, thinking it’s a seizure. But when they realize it isn’t, they walk back out and leave me to handle it alone. Nurses have even disconnected him from monitors, so they could pretend his heart wasn’t racing. I stood there in fear, overwhelmed, watching my son in medical and emotional crisis—alone, in a hospital of all places, a place that is supposed to help.

I know my sweet boy is still in there. I see glimpses of him every day. A few months ago, when his medication was lowered, I saw him —if only for a short time. Those few days he was able to  drink without thickeners. He could eat regular food. His spark flickered back to life. But then, for a mild seizure, they raised his medication again, and I lost him all over.

People ask me why I don’t just take him off the medications myself. The truth is that these drugs are for seizures—and seizures can be deadly. He does need protection. But he also needs a doctor who will fight alongside us to find the right protection. One that controls his seizures without destroying everything else about his life. Seizure control should not come at the cost of robbing someone of the quality of their life.

Josh deserves so much better. He deserves to smile again. He deserves to have his light back. He deserves to dance like no one is watching, to enjoy being around others.  He deserves a full life. And I deserve to see my son thrive—not fade away.

Being a special needs mom is a different type of life. It is definitely harder than the average, but we deserve better than this. I will not go away. I will fight this system with everything breath I breathe. No person gets to determine my son’s worth. If he were neurotypical these side effects would be addressed immediately. He deserves that same respect.

His life matters!!