How we are doing.

I've been working on a post, but it is long and unfinished. I'll get back to it and post it soon, I hope.

For now, I just want to tell you that we are doing our best. But, honestly, it is a struggle every single day. Harlie is pretty miserable. I just went in to feed her (it is 11:00pm) and even though she is sleeping, she is uncomfortable and tossing and turning. She is itchy from her bed sore healing (which now has a rash around it) and itchy around her trach. Her face grimaces, even in her sleep. And I even gave her Benadryl tonight. It is very hard to see her like this. She is in pain, and there is nothing I can do for her.

Yes, on occasion we see glimpses of her personality. But, they are fleeting moments. For the most part, she's been pretty darn miserable since August 8th - almost three months! I think that is a lot for a girl who just turned eleven years old.

And it is a lot for Tom and I. Last night she said, "I hate my trach." She asks us regularly when can she get the trach out. We have no answer for her. Last night she said, "Maybe before Spring Break?" And her voice is so weak. And it is so much harder to understand her. It takes so much effort for her to talk, and most of the time we have to say, "what?" So she has to say everything multiple times! I miss her cute little voice and her cute little laugh so much it physically hurts.

And the nights or days when we have to suction a lot, or just do a lot for her medically, she will look at me and say, "I'm sorry." I'll tell her it is okay and I don't want her to be sorry. I will take care of her as long as she needs. Frustrated, she'll ask, "What's wrong with me?"

Some days, I don't know how much more my heart can take. It is hard to describe what it feels like to watch your child suffer. And we've had to watch so much over the last eleven years. It is not right. It is not the way it should be at all. And I just want to see her happy and "healthy" again.

For so long I was so hopeful. We had so many surgeries ahead, and they were going to make things better for her in the long run.

But now, that hope has been replaced by fear. I'm fearful that we won't be able to fix her jaw to enable her to get the trach out. I'm fearful that we won't get back to the way things were. I'm fearful she will get so behind academically that she won't believe how smart she is. I'm fearful she won't be able to develop friendships. I'm fearful of the day we have to take her back to the hospital for another surgery. I'm fearful that she won't find happiness again. I'm fearful we will lose her.

Every day is a struggle. And somehow Tom goes to work and focuses on his clients and what they want. I don't know how he does it.  Some days I can't get myself out of the house. 

And Cooper misses his buddy. She doesn't play like she used to. He had a bad day last week. Just misbehaving, not listening, etc. It was over the top for him. So I finally sat him down and with more concern than anger, asked him to please tell me what was going on with him. He started to cry and he told me that he's lonely and he misses Harlie. He said that she always tells him she's too tired. He will go and just sit with her and watch what she's watching just to be with her.

It is hard. Everything is just so freaking hard right now.

This is not sustainable. We have to figure this out. We just can't live like this for an undetermined amount of time. We need to focus on getting Harlie happy again. And once she's happy, we will be happy, too.

Harlie loves to go camping. And our fall camping trip is just two weeks away. This is the most fragile she's ever been when camping. So, we are a bit nervous about it. Tom is working so hard to make this trip safe and fun for her. But we are struggling with a few things. For example, this trip is unplugged, meaning no screens. But, Harlie can't play like she used to.  She lacks energy and mobility right now. So, we are struggling with what to do about that. If watching tv is how she is coping, I hate to just rip that away from her.

Well, it is late and tomorrow is a busy day.  I am going to force myself out of the house to go and get a very overdue mammogram. If that doesn't motivate me, then I don't know what will. Then I am going to go to work and try to pretend that my life isn't as bad as it is. So, I need to get some rest!

Thank you for reading. Thank you for caring about us. We appreciate it more than I could ever say.

xo,
Christy