I am a woman at her breaking point. I am tense, I am on the edge.
** WARNING** Potty mouth ahead.
With 2 days left, I am thrilled with Gabi’s progress. We have learned so much and I feel like it’s going to be really hard on the outside but I am confident that she will continue to do well.
Because there are so many variables with feeding issues, I talked to our psychologist and got some clarification about how to tackle those variables. I wish she would have explained this to me from the beginning, but better late than never!
Our first goal is to wean from the g-tube so that means incresaing the volume of food she will take orally. Then we can slowly start to give her back control to feed herself. Then we will work on her chewing skills to get her back to eating whole foods.
So we go home with me spoon feeding Gabi and offering her controled measured drinks in a medicine cup. It is timed for 25 minutes and I give her a bite, bite, then a drink. It is very controled. All the food is blended up right now. Ideally, this will be 4 times a day. With school, I am not sure we can do 4 times.. it may be just 3 times a day. I have to measure and weigh the specific foods that we make for her and record every gram of food and drink and then send it to the dietician. We will continue with outpatient therapy 2 times a week.
This is working but I am so done with the strict rules and hippa laws and ridiculous protocols that sometimes don’t even make logical sense, but the rules are followed anyway because “that’s just the way things are.”
Ms. S, one of our feeders, asked me if I was ok yesterday after her dinner hour. She said I seemed anxious. I wanted to punch her in the face but also cry in her arms. I told her I was having a hard time but I am ok.
But this is what I wanted to say:
“Of course I’m fucking anxious. I’m sitting in a 4×4 room with no windows spoon feeding my 5 ½ year old daughter that has half a heart and I have to say stupid shit like “take your bite” and “take your drink” with no emotion. It’s not fair and I’m so fucking tired! And you’re all sitting outside this room taking notes on my parenting! I feel judged and I disagree with a lot of what is done here. But we have tried every other fuckiing option to get her to eat so I have no where else to turn! I’m stuck and I feel like you know that. So you all have that power over me and I hate it. So, feel free to tell me that I seem anxious because I fucking am anxious and I am scared and I am tired and I didn’t choose this life and I don’t want to do it anymore.. but guess what? I don’t have a choice! So you go on home to your family tonight and I’ll see if I’m lucky enough that I can facetime with my family, get no sleep on the airmattress that lays on the nasty floor tile. Then I will listen to my daughter breathing next to me, will praise God that she is still alive and then we can wake up and do this all again tomorrow with you fucking people!”
Ya, I would say I’m anxious.
Tonight they gave Gabi blended green beans to try. Blended up unsalted green beans. She gagged. I tried again. She gagged. I would gag too. She took the blended mac n cheese and her choc milk just fine. So, I skipped the nasty green beans because that is disgusting. The feeder opened the door and said, you cannot skip foods. I said, she doesn’t like them. It didn’t matter. I couldn’t skip foods. Well, you know what? I wouldn’t eat that shit either. What 5 year old kid is going to eat that? I skipped it anyway. Please- kick me out of here! I’ve had it.
Max is sick at home and Ethan is being a kick ass husband and dad but he doesn’t feel like it.
I need a very large, ice cold, very alcoholic drink.
You know what the worst part is? I read an email from our youth group leader ( who is great). Her email was a reminder for the kids to bring their bible and rosaries tonight. I literally rolled my eyes and closed my computer. A 13 year old girl here took a turn for the worse and is in terrible pain again from her cancer. A paralyzed 2 year old girl here got emergency transported back to childrens because her cancer came back and it is more aggressive than they thought. She has a 25% chance of survival. There is so much here. So much.
I can’t find God today. I shouldn’t be looking because he’s probably there waiting for me but I don’t even want Him to find me. I just want Him to leave me alone.
1. more. day.