Hi @Nancers. As I mentioned, my daughter was dx in January, so this is all pretty new to me, too, although we started seeing doctors last March about her symptoms. I can totally relate to your feelings, as they are still VERY raw in me, too.
Some days I scream and cry, “Why her?!” It’s beyond sad watching her slowly slip away from how she used to be. I blame myself a lot, too. Like, what did I do wrong as a mother?
I see FB posts of other kids her age planning for college and celebrating school dances, etc., which make me feel even more worse. She should start becoming independent right now, but instead she seems to be regressing. I have to remind her to take her meds, eat, etc. I sometimes feel like we are going backwards in life, not forwards.
I had to go on antidepressants because I was so, so sad about all this. I guess I just try to remind myself that this is our journey and there is nothing I can do to change it. It has taught me to be more patient, empathetic towards those with mental illness, loving, etc.
I’m scared for the future and worry about her often. She is my first and oldest child. Seeing our children in pain or struggling is never easy…
Does your son have a counselor? I occasionally go in with my daughter and talk about how things are impacting me, too. Luckily, my daughter and I can still have open, honest conversations about things. I try to stay strong in front of her though.
The first couple of meds she was on were awful. She turned into a zombie. She started Abilify and seems to be handling it better, although the hallucinations aren’t completely gone. ): It is a lot of trial and error…
I, too, felt like it was a death sentence. I guess I just try to stay hopeful that perhaps new meds or a cure will be developed one day in the future. I also try to find stories that show that a person with sz can go on to lead a successful life.
Hang in there…We all know what it is like and are here if you need to vent. Big hugs.