Thursday, November 28, 2013


I got another call from my insurance advocate the other day. Usually when she calls I try to get the conversation over with as soon as possible. No offense to her, but having to dredge on the awfulness of Hailey's disease can be tiresome. I decided to stay on the phone a little longer this time. She had noticed that I wasn't as crass as I usually am, I was almost chipper she told me. I said that at this moment things might not be GREAT but I'm where I can handle my situations without being bitter. When she asks the same question she asks every time we speak (How's Hailey) I change my answer this time. I tell her, "you know, I have this online diary that is Hailey's website and I journal everything on there. Why don't you take a look?"

I want her to KNOW Hailey and not just know us as a name on a file that she's required by her job to involve herself with. If she's going to do her job, which is to learn and help my child, she'll need to know my child. Look at a picture of her, see how hard she works in therapy, see how much fun she has at school, see us having to go to Utah every 3 months for Dr. appointments. Read about how I felt at different times in our journey. I gave her our blog name and told her that it's her choice whether she reads or not, but if she wants to know "How's Hailey" she'll read.
I often pass on Hailey's blog to complete strangers. A few weeks back we were in Target and Hailey had a melt down. Kids have melt downs. Instead of entertaining her melt down we decided to leave Target with Hailey kicking and screaming. An older couple passed by and said to one another, "looks like THAT child could use a spanking!" I had 2 choices to make at that point. I could ignore them and continue to carry Hailey's walker out of the store and tend to my child or I could have stopped and given them a Hugs for Hailey card. I wanted SO badly to stop them and tell them, "She doesn't need a spanking. She's a 5 year old that has a terminal brain disease that often causes her to not have control over her emotions." I wanted to SHAME them. I don't know if it would have done any good though.

Sometimes when we are out and about especially driving Josh will Honk the horn at someone who cut him off and yell at the person saying they should think or maybe call them a name.  He drives like a race car driver, but everyone else either drives too slow or they are bad at it in his opinion. He likes to interfere. It's just who he is. We were at Costco getting gas and there was an older man filling his car while standing on the opposite side of the pump. A car wanted to drive down the middle of the lanes but could not because this man did not want to move. Josh explained that there is a car wanting to pass and the man said it'd have to wait until he was done. He wasn't going to move. Josh decided that this man must be told that his decision to stand and block the car trying to get by was basically stupid. I got annoyed that these two grown men had to stand and yell at each other. Call each other names. They don't even KNOW each other. The man thought he was doing nothing wrong. Josh thought that telling this man what to do was going to change his way of thinking. Neither of them gave in. They both thought they were correct. I wonder every time this happens why Josh thinks he can change the way someone acts or thinks. If you honk at someone who cuts you off does that mean they will never ever do that again? Do they even care you honked? If someone litters and you call them out, but they continue to walk away and obviously don't care what you think, will they never litter again? If I would have said what I truly thought to those people who thought Hailey needed to be spanked, would it have changed their opinion the next time they see a child having a melt down? I dunno…

Is it apples and oranges? Is Josh starting to rub off on me? I don't want to be the type of person that needs to have everyone thinks my opinion is the correct one, but I have to make a choice of what I'd do as a person. They may not want to know about Hailey, but I tell them anyway.

You never know what's going on over on the other side of that fence, with all that grass that is so green, right?

I was looking at video of last years Thanksgiving. It was only about a month after Hailey had her g-tube placed and she was lying on the couch downstairs and we all took turns sitting with her while others ate. I didn't know what I was thankful for then. She was hooked up to a machine that was going to be feeding her while we were all eating turkey, stuffing and pumpkin pie.

One year later and things couldn't be more different. Hailey will get to sit with us at the table. She'll get to taste the food everyone else is. We will be together.

I may not always understand what or why something is happening,  and I may always over think every little thing, but it's nice to know I can come here and write. Express that I'm thankful for my daughter and the lessons she teaches me on more days then just one.

I'm Thankful.

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