While talking to a friend the other day about kids, she mentioned that she thinks that our posts sometimes seem sugarcoating. While we don’t want to make it a habit, I think that, if anyone, I would be the best candidate to scrape off the sugar.
Liliana is a lot of work to take care of. It prevents us from doing a lot of what we want to do. During vacation, she didn’t gain as much as weight as the doctors wanted us to. But, a lot of the time we wanted her to have fun, and if we’re always stuffing her to the point of nauseousness, how can she have fun? So we spent a lot of the time in dialogs: “Do we really want to feed her right now?” “I don’t think we can do that, Sean; it’s too much work!”, and similar dialogs.
My mom and I also often get in fights about how to handle Liliana when she’s like that. I am always concerned about Liliana figuring out how to break out of the endless cycle of feedings. Couldn’t she fake gagging to stop the stuffing? She always insists that kids don’t work like that, but I can remember many years of simply trying to figure out how to get my way (yeah, I was the youngest child). If, for us, feedings are like, “What, it’s 6? Already time to start feeding her again? We just finished!” then how can Liliana feel about being trapped to what seems like a leash? At least we’ve gotten out of the screaming phase. But really, wouldn’t stuffing your fingers into your mouth be a good way to get out of the feeding? Quite often, when she starts, I just ignore it because I just have no idea what to do. Do I tell her “NO!” because I don’t want her to think it’s acceptable to try to gag yourself (and it isn’t, it’s inappropriate, dangerous, and disgusting), or do I try to comfort her, and then there is the new consequence out that stuffing fingers into her mouth can bring comfort or entertainment?
Mercy wakes up at 7 to feed Damien, and from then on, it’s nonstop working with them. Somehow she’s squeezing doing laundry, making dinner sometimes, cleaning up after Liliana’s constant mucus/bile vomit, and trying to keep them entertained. That’s a small part of the list, as she is also working part time as a freelance web designer as we barely have enough to do what we need to.
Now, at this point, you may be thinking, “Oh man, how can I help them?” but trust us when we say that we don’t really want help in the form of material goods or anything. We’ve received a lot of support from a lot of people, and are doing as well as we can. I wrote this so you can know that not everything is the fairytale you see in the pictures. Every second is a debate of what to do next. Just know that we have a plan, but as everything else is with kids, it’s very long term and can’t be accomplished tomorrow. A long string of things have to be completed first.
Again, thank you everyone for your support, and please feel free to ask questions in the comments below or message me on Facebook if you do want less sugarcoating. And thanks to Kelly for talking to me about it! Being a parent at this age can be lonely, especially when you’re trapped inside taking care of a tethered child.