“My name is Mandy Ochoa. I am the proud mom of Ethan Smith. On February 4th, 2006, we almost lost Ethan at age 7 months. We found him not breathing in his crib. He was lifeless and blue all over. I lost all sense of reality in that one moment. However, God gave me enough courage to call 911 and guided me outside of my home. I didn’t know why I was to lay my son down on the floor and go outside. But once I opened my door I knew why. A police officer was driving down the road. I flagged him down and told him my son was not breathing. He immediately entered my house and proceeded to perform CPR. That police officer saved his life until paramedics could come and they took over his breathing. God had sent me an angel that day.
Once we were sent to Arkansas Children’s Hospital it again was like being in a whirlwind, several people rushing around hovering over my little baby in the emergency room, yelling out orders and directions, hooking him up to machines, injecting him with God knows what medicine, inserting a tube into his lungs, strangers asking me millions of questions, but nobody answered mine. Why is this happening to my son? What is going on? What happened? Is he breathing? Is he going to be OK? Someone please answer me!
Finally, there was silence, the bustling around of strangers stopped and everyone is around his bed blocking my view. Then suddenly there is applause! He has a breathing tube. He is breathing! Not on his own but he has breath. They tell me he is stable, that they are transporting us to the pediatric intensive care unit. I can finally take a breath of my own.
For the next two days there are many tests being performed and many doctors checking on my son, many questions being asked, again no answers. They decide that they will take the breathing tube out and see if he can breathe on his own. It’s a miracle! Prayer does work! God does listen! He is breathing on his own.
Finally, I get to hold my son and rock him. This is when I find out something is still not right. As he lays his sweet head across my chest I feel him tighten against me. I hold him out in front of me and his eyes start to roll back, his arms stiffen straight up in the air and his breathing is labored. As fast as it started it ended. What was this? What was going on? I speak to him. I call his name and he is not responding to me. I call for the nurse and tell her my son is acting funny. I don’t know how to describe it. She looks at him and of course by then he is looking around as if nothing has happened. She tells me that she does not know but of course if it happens again to call her. This does on for two days before a nurse is able to see it for herself. She says that he is having a seizure and she is calling neurology. A what? A seizure? Why didn’t I know he was having a seizure.
Again, a whirlwind. More doctors, more tests, more questions. No answers! Finally, I am told after an EEG is performed that my son has epilepsy. To be more specific, he has Complex Partial Seizures. Epilepsy? I didn’t see my son’s whole body shake and jerk? How can he have epilepsy? There is no on in the family that has epilepsy. I was just as uneducated as many people are about the condition.
But finally some answers! At least I can put a name to what happened that day and what his little body is going through. He is put on medication and told that we can go home once his seizures seem controlled through medication. Ah, home! Yes, I want to go home. But I was frightened! Home alone? I think to myself and wonder if I can talk Dr. Sharp into coming home with us so that I can sleep at night. I am sure every parent would like it if he would come live with them, but I think his family would miss him.
I just feel that I would feel safer if someone trained in epilepsy was at my home 24 hours a day. Who am I to handle such a situation? I am not trained and educated in this condition! I have no idea what to do. What if I am home alone with him and he has a seizure? Even though the hospital explains numerous times the first aid procedures regarding what to do when someone is having a seizure they cannot give you the courage and faith that you need at that moment to handle the situation. However, I have learned that it comes with time. It comes from the support of other parents that are in the same situation as you are. You find out that you are not alone. You are not the only person going through this. And most of all, your child is not the only child going through this.
Although you may not ever find our why your child has epilepsy or a seizure disorder I have faith that if all parents fight hard for their children we one day can find out those answers. And even better, find a cure!
I hope by creating this support group for parents we can give support and guidance to other parents who are scared and feel alone. I hope as parents we can educate people on epilepsy and seizure disorders and tell them that our children are normal happy healthy children just like theirs. They don’t need to be scared of our children. They don’t need to treat them differently. They too just need a little more support and understanding that they have a condition that they can’t control. Epilepsy is not WHO they are, it is WHAT they have.
Don’t let epilepsy control your life, control epilepsy.”
-Mandy Crow-Ochoa