Mary Theresa

I am the parent of an adult child who suffers from an acquired brain injury and severe epilepsy, He currently lives in a hospital/group home. It took me a long time to get him to the good place he is now. Because no one will listen to the family’s concerns, their constant advocacy that can ratchet up even to a national level. What is it really like for that patient? What is it really like for that family? I have a background solidly in education. I have worked with many kinds of students with many kinds of needs. But I have also lost a young husband to a rare cancer, sinus cancer. From the time I was 39, he 45, until I was 43 and he 48, we raised three boys during radiation, chemo, surgery after surgery, hospitalization after hospitalization, and then we lost this most brave husband, father, son, brother, son in law, brother in law, friend and all around great guy. That's my background, mother, wife, widow, teacher, advocate and now single parent of three young men, one of whom has been totally disabled, not just by the mystery that is Epilepsy, but by a mental health system that is seriously wanting in the compassion department. Not bitter, not vindictive, just a mother who needs someone to pay attention. Pay attention because this shouldn't have happened in the first place, and it cannot continue. Our story is one of Traumatic Brain Injury, Epilepsy, Mental Illness, a family torn apart, and a state that will not listen. A state that lies to your face after you have researched and worked and dedicated yourself to this cause, this son, this family member who is suffering. The more time passes the more neurologists know about this illness and the many ways to treat it. Even brain surgery is better today than it was in 2010. And yet keeping awareness and advocating helps to enjoy all of life, daily life and future life. I will never stop learning.