Helpless and Scares

I am a single father to a 15 year old daughter with Tuberous Sclerosis Complex, a genetic disease that affects the brain, skin, heart and kidneys. In her case she is mentally disabled in the Autistic Spectrum and has seizures that are usually kept under control with medication. She loves attention but often does things on her own like your average stubborn teenager.

She is tall, beautiful and until she spoke, you would never know she had a problem. But when she does, she speaks in a monotone voice, refers to herself in third person and describes events in metaphor.

Her mother lost all custody in 2005 and the last time she saw her mother was in 2009. Over the past eight years it has been primarily her and I.

The mental disability has been an issue that has taught me patience and to remove expectations. However her seizures are what has made me feel the most helpless.

She currently has suffered every type of seizure. Her seizures have landed her in the hospital multiple times. She cannot take a shower or bath unattended for fear she'll have a seizure and drown or hit her head on the faucet or bath. There is a plastic sheet over her mattress for when she looses bladder control and there has been no medicine yet that has managed to get them under control.

Early this week she began having Tonic Seizures that were occurring every couple of minutes. I rushed her to emergency room where she was given Lorazepam and a loader of phenobarbital that has knocked her out for the past 4 days. To this day, she's still a little loopy and wants to constantly sleep. The seizures are no longer happening every few minutes bit she is still plagued with tonic and emotional seizures every day.

These past few days I've felt the most helpless and frightened. There is no physical clue to why these seizures have suddenly begun happening. There are new stressers in her life, with the remodel and my parents moving in, the only thing that may be causing stress would be the change in her daily routines, which I don't think would cause seizures like this. Now all I can do is wait for her next neurological appointment.

I don't mind the input from others. But some of them insist that they have better experience in parenting my daughter. I understand they may be parents themselves but none of them have gone through this on a daily level. The intentions are good, but it's insulting when I hear people comparing their experience with mine. You don't understand and please listen when I tell you that. To me it feels like you're questioning my parenting more than helpful advice and I have enough stress with the fear and helplessness of dealing with my daughter's condition.