When starting this journey almost 4 1/2 years ago I never imagined how lonely it would be, how isolated I would feel from the rest of the world, how unimaginably fucked up it would feel to think that no one, not a one person in your life understands how you feel about raising a child with Down Syndrome.
You can give me all the support, all the sympathy, all the hugs and love and help that I need and it still wouldn't be enough to make me feel good about myself as a mother. It wouldn't make me feel fit to do this job, to be this much to one person in the world. I know I'm his mom, but I'm everything, caretaker, doctor, nurse, teacher, therapist . . . too much for this one person to handle.
And yes there is the great Down Syndrome community and they are wonderful moms and dads and they have made this journey so much easier for me, so much better but at the end of the day I'm alone in my own mind and I'm the one who has to deal with the shit.
Set has been acting strangely the last few days, we went to the ER last night, waited forever, as usual, and I thought Seth had a simple UTI, something easy, something that you give some antibiotics and that's it. Nope, not my kid, not my Seth.
We got handed constipation again. This is something we regular deal with with Seth. He's always full of shit, quite literally. So another night of enemas and Miralax and crying and whiny Seth and I feel like I'm at the end of rope, like I don't know if there is much more that I can think of to do for him.
At the end of the day and the beginning and the middle I'm there for him, I'm doing everything for him and it's extremely frustrating.
And I know that this blog is a lot of whining and bitching and moaning on my part, and I know that it looks horrible. . . but this is the only place I get to do that. I can't bitch to anyone is this life, I'm alone in this journey and everyone sees the good about Seth. I do too, but I see the issues as well.
And I'm very tired because on top of my regular duties of being a mom and cooking and cleaning and laundry and paying bills and therapy and figuring out which kindergarten Seth is going to . . . . I have a clingy, sick child who doesn't understand why he always seems not to feel well.
So this is my life, sitting on the couch with my son, watching Yo Gabba Gabba and praying that I soon get a moment to cook dinner, take a shower, and get some time to myself. Yeah he's sitting on my lap as I type this.