I am a father of 3 children. Our daughter is almost 8 and has a rare genetic disorder. She is non-mobile, non-verbal, has a feeding tube, and global developmental delays.

I don’t know how to deal with this for the rest of our lives. She has a slight understanding of basic things we say but otherwise there’s so much she doesn’t. If we don’t put onsite PJs on her at night she will dig in her diaper and smear and eat her feces. She has to be watched constantly because she will fall or get into something that will hurt her.

I grew up in a very religious family and now I’m not even sure if I believe in God. I’ve grown to question everything. I’m angry and resentful and can’t understand why someone would put me through this. Every life choice we make has to revolve around her to make sure we’re giving her the most we can. Home floor plans, vehicle purchases, what city we live in, etc.

Even going out to dinner or outings as a family is a nightmare. At restaurants she will grab everything she can reach, she is loud and disruptive, and it all makes what is supposed to be a nice evening into something extremely overwhelming.

I do my best to get me through each day. I often tell myself “I can do this” but it’s so unfathomable to think about having to do this for the rest of my life.