I’m super positive and encouraging and I tell Oliver 20 million times a day how proud of him I am, and how well we think he’s doing. But damnit some days I’m sick of it.
I’m sick of the positive attitude and the ‘it’ll get better soon’ mentality. Im sick of the feeding pump alarm, and rinsing the giving sets. I’m sick of the medications that need to be before his feeds, but not too close or he will just throw it and all of the milk straight back up again. I’m sick of leaping out of bed every single morning to clean up his vomit, and then catch the next three while I hold him and try to convince him it’s okay to sleep again. I’m sick of rocking him to sleep because he can’t settle himself because there’s always milk filling his belly and he hates it. I’m sick of throwing away piles of food because he won’t or can’t eat it. I’m sick of trying 10 different spoons every meal to convince him to open his mouth. I’m sick of getting my hopes up yesterday because he ate 30g of food and then being bitterly disappointed today because I couldn’t convince him to eat 3g of food. I’m sick of being scared when he is eating that we will go too far and he will just throw it up anyway. I’m sick of trying to keep him happy and distracted because he’s so tired all day long because he doesn’t get enough energy from his meals. I’m sick of having to keep him awake when all he wants is to sleep because it’s not a feed time and if he sleeps now and not with the feed then I’ve gotta hold him for the hour feed and stand on a towel for when he throws it all up. I’m sick of having to time every single second of our lives around his feeding. I’m sick of crying after I put a new NG tube down his nose, because he looked at me through his tear stained eyes as I did it and I knew he hated it. I’m sick of retaping his face knowing every time it makes him more and more adverse to people touching his face. I’m sick of forcing him to do his exercises for fear of him becoming developmentally delayed. I’m sick of hoping someone will give us an answer and never, ever getting one. And I’m completely and utterly sick of getting frustrated at Oliver when I know that not one single thing in this big horrible list is his fault.
He’s doing his complete, absolute best. And I’m even sick of that. I’m sick of him having to do his best when he should just be able to do what he wants and that’s all that should matter.
One day this won’t be how we live, I know that. But right now it’s all day, everyday. So I’m just taking a moment to tell the world how sick of it I am. And it’s okay to be sick of it. It doesn’t mean I don’t love Oliver or that I want to give up. In fact I think it means I love him so much I want everything to be different for him, he deserves better. So we breathe in, and out. And we make it as good as we can for him, as often as we can. And some days we breeze through. And some we don’t. And ain’t that just life?