I hate food

Yup, read that title again.

Ok, I love my food. I love carbs, and chocolate, and ribs, and steak, and vegetables. I love to cook. I love to bake. I love my food.

Over the past few days I have come up with the realization that I don't have a good relationship with Jillian's food.

It is amazing that Jillian does not have a food aversion. Most kids who vomit like her do. Her doctors are amazed that she does not. Many of them don't believe us when we say that she does not have a food aversion. The only times she shows signs of a food aversion is when she starts vomiting multiple days in a row. Then she starts to not want her meds but once the vomiting is over she is willing to take them again. She also shows signs when we try new things and you can tell it hurts her, like when we did the trial with rice cereal. But otherwise she is fine with putting things in her mouth and giving them a try.
We have worked HARD at her not developing a food aversion. (not saying that parents' who's kids do have aversions don't work hard). There is a reason we don't give her enough food by mouth so that she vomits. We know about how much her stomach is able to handle on a good day and we make it less then that. The hard part is that the number that she can handle varies by day and sometimes she can not even handle her one med which is 1ml.

But while Jillian most likely does not remember the days of a vomit covered house, I do. I know what that was like. NO ONE wanted to be here some days. There was puke everywhere. There was a lot of crying. There was begging a child to eat who was too exhausted from just trying to eat. There were towels all over our house to try to catch it all. There was gagging, and coughing and choking. There were times you would just scream at her to take her next breath. There were friends and family who had children of their own that would observe some of the things that Jillian did and would get a worried look on their face. Early Jilli life was hard. Don't get me wrong, there were great happy times too and a large part of me tries to block out the vomit and choking but it was what we lived. While she might not remember, I do. I remember the sleepless nights.

I was trying to figure out this week why every part of me feels drained. I feel exhausted at a different level (I gave up sleeping with Jillian a long time ago). I feel burnt out and I could not figure out why. Nothing had really changed. I was getting no less sleep then normal. Everything was close to the same, but we added food tasting into the mix. I remembered that this is how I feel when we try something new with Jillian. Why? Because I see what it does to her. I see the chunks in the drainage bag hours later. I see when she spaces out because she is just trying to get it to go back down. I hear the cough. I want to be excited for her to try new things but it is hard. I see the day to day that the doctors don't see. I see what them prescribing this new thing does. I see how it changes our lives either for good or for bad. I live the ups and the downs. To me it is more then statistics on a page.

I see the weird that comes of it. Yesterday Jillian's teacher came to get me because she had a weird orange stain all over her white onsie. She about 7ml of sweet potatoes on Monday night. I checked her over. Her g port was closed. Her j port was plugged in. She had not pooped all day. I had picked out the onesie for her to wear. Brent put it on her. She had already had 2 diaper changes at school and no one had seen this large orange area that smelled like milk and sweet potatoes. The milk we figured out that her milk bag did not have the cap screwed on all the way so some had leaked out but that would not cause orange. The mysteries of Jillian. Where did it come from and why did anything smell like sweet potatoes over 15 hours later? I feel like I need to be Nancy Drew wit her some days.

I have a respectful love for Jillian's tube. I have that same love for her Elecare. Hopefully someday I will have a love for her eating orally too, right now I guess I am in this protective mode for a reason. God granted me the want to protect her for a reason, even if right now it feels like I am having to protect her from food.