Harlie wants to eat by mouth.

Saturday, November 13

Tonight, we were getting ready to go to a friend's house for dinner when Harlie came in my bedroom. She said, "I want to eat food like other people did." (She gets present/past tense words mixed up.) So, I said, "You want to eat food like other people do?" She said, "Yes, I am tired of just yogurt and putting food in my stomach (pointing to her g-tube). I don't want to do that anymore." The only thing she eats by mouth is smooth yogurt (with no fruit bits, which she calls crumbs, haha). And she is saying she doesn't want to tube feed herself. 

Ugh. This is a sore subject for me, and her, clearly. And it is kinda worrisome - we tube feed her 5 to 6 times a day! She can't get tired of doing it! This is also the 3rd time she's said that since we went camping. Meals are kind of a big deal when we go glamping. Each family is in charge of a meal, and usually they go all out with something really good. We all eat and exclaim how good it is. It is clear she sees that and I'm guessing she's feeling like she's missing something. 

Break. My. Heart. 

I was just telling my friend Donna about this a couple of weeks ago. Her daughter, Alex, has a feeding tube, too. We worked for so long to try to help Harlie eat by mouth. Heck, I can look back on many of my blog posts and find sentences like, Harlie ate a whole ONE ounce of food today by mouth!  Things are going to change, I can feel it!  I can't believe how excited and hopeful I was back then. Looking back on it now, the person I was then seems so silly, so energetic, so inexperienced. It is like I've been so many different versions of myself since Harlie came along. I don't know how I'm not crazier. 

Anyway, we spent many years going to feeding therapy. I spent years blending and pureeing foods like waffles with butter and syrup, peanut butter and jelly sandwiches, tacos, etc. Every time we would get somewhere, she would have to have another jaw surgery, and everything about the way she swallowed, or was able to manipulate her tongue, etc. would change, and we would have to basically start all over again. 

Over the years, reality wore me down. I admit it. I got tired. I got more experienced. I gave up on that dream and I accepted that she would not eat by mouth. I had to. I "chose" to believe that one doesn't have to eat by mouth to have a good life. A full life. A life with love and happiness. 

But, now she has this dream?  

What. The. Hell????

This was not part of the deal I made with myself. The deal that I made with God. 

So, I sat down and told her that I want that for her, too. But, that her mouth doesn't cooperate. When it comes to being tube fed, I told her that she wouldn't be able to eat enough by mouth to keep her healthy (I meant alive, but I just couldn't tell her that). She said, "I will do it - I will prove it to you." 

Ugh. So, I tried to explain that it isn't about her proving anything to me. She doesn't have to do that. I already know that she is the strongest person I know. That is when she started to cry. Like the brave kind of cry, where she was trying not to cry, but it was leaking out anyway. 

She said something about having more surgery. I don't know how she can even think about having more surgery after the last two. From my perspective, knowing what I know about how hard they were on her entire body (not just her jaw) I can't possibly consider more. She is finally back to baseline since April! It took her body six full months to recover from April's surgery! I just can't go into another easily. Heck, we don't even know if more is an option. We never discussed anything after her the TMJ replacement surgery. I considered that one our Hail Mary. 

I ended up sitting her down and telling her that we love her and that I wanted her to know that we have agreed to all the surgeries to give her the best life we could give her. I told her that we want the same things that she wants. We are on her side. And I'm so sorry. 

So, we'll have to try to make best of what she has now. I don't know how to do that. I don't know how to start. I'm feeling pretty overwhelmed right now. The last time we discussed this (years ago) the feeding therapy program had like a two year waitlist. God knows it is probably really bad now, considering Covid probably shut it down for a while. Everything in medicine is harder than it was prior to Covid. 

I know what she wants - she wants to put food in her mouth, chew it up and eat it. I just don't think that will ever happen. She has no strength in her jaw, her teeth are a mess, her jaw isn't lined up right, she's never manipulated food like that - I think that's a pipe dream. 

I think I could go back to pureeing foods and she could maybe taste them and eat them like she eats yogurt. But, I really don't think that's what she is talking about. I guess I need to do it once and offer it and talk to her about it. Clearly, I'm processing it as I write this. 

Crap! I just remembered that we're not even out of the woods yet when it comes to her being able to keep the TMJs she has! If we can't kill this infection for good, her surgeon will have to remove them, and put new ones in down the road. IF that's even an option! I'm genuinely afraid that her skin will never allow that much more trauma. Her ENT said the same thing about her skin around her stoma. 

The disappointments this girl (and us) have had to live with and make the best of are really quite cruel. Add them all up and I don't know how we are okay. So, I can't let myself think about it. 

After our conversation, she seemed mad at me. She said she didn't want to go with us to our friend's house (who lives two houses down). She was playing her music on her tablet really loud and singing loud to it. We tried to talk to her, but she didn't want to talk to us. I asked her if she was mad and she said no. So, I told her that it is okay if she's mad. 

We left her with her brother and walked two houses down. Lindsay said her daughters were decorating their rooms for Christmas. I knew Harlie would love that. So, I went home and asked her if she wanted to help. She said yes - that she would go for 20 minutes. Ha! She also insisted in walking there. So, I let her. She ended up staying way longer than 20 minutes. She was definitely in a better mood after hanging out there with Peyton and Olivia. Damn, I'm so thankful for that kindness. 

Okay, that's it for today. 

Saturday, December 4

Soon after I started this post, I went to my blog to try to finish it (which I clearly didn't do since I'm writing this now) and came across a post that had been viewed recently. My blog shows me posts that have been viewed more than x amount of times. I'm always surprised by what people are viewing - I mean, what brought them to this post? Anyway, what a coincidence - this post had been viewed - Feeding and how I feel about it. How crazy is that?! 

I don't even know what to say. I mean, how is this our reality? It has been 15 years and I still feel like my life isn't real sometimes. I wrote that post 11 years ago. Eleven!! And look where we are! WTH?! 

I have hesitated to finish this post and share it because I really can't seem to end it on a positive note. But, that is the way it is sometimes. I don't want anyone to feel like you have to cheer me up or say something positive to make me feel better.  I'll save you the trouble and tell you that's just not possible. You can't change the way I feel. I earned it from 15 years of experience. It is called grief and no one can stop it from happening. Not even me. And, trust me, I've tried. When I get the courage, I'll write more about that. 

Okay, I'm going to go on ahead and end this one. I do have more to tell you about (my Grand Canyon trip, Caylee's wedding and the We Heart Harlie Turkey Trot!) so hopefully I'll get to those better topics soon. 

Thank you,

Christy xo