The truth is sometimes I don’t want to remember

My experience with Wishes Can Happen this morning was quite profound. I'm completely emotionally drained and physically exhausted. At the same time, it was for a very worthwhile and and well worth the fallout. I'm not sure if people understand how difficult it can be to talk about one of the most horrible thing any parent can imagine, a child with a life-threatening or terminal illness. There are times that I'm able to live in a bubble and pretend that we are a normal family. I hate the word normal but in this case, I mean a family who's child isn't facing a life or death illness, with no hope for a cure. This bubble I sometimes retreat to is born out of necessity. It's purpose is to help me…

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The important reason I cried this morning

This morning, Emmett and I went to Wishes Can Happen's annual Wish-A-Thon. I was planning to go alone for a couple of reasons. First of all, this is a very hard thing to do and I didn't want to upset the kids or talk about Gavin's story in front of him. There's a silver lining to Gavin being so cognitively impaired. He's not really aware of how fragile his health is or how many times he's come close to losing his life. I have a very hard time talking about that in general but especially in front of him. Secondly, Gavin's not been feeling well and someone needed to stay home with him. Sharing our story and showing our support for Wishes Can Happen is very important to us. It's…

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As far as days go, this was a bad one

As far as days go, it's been a rough one. I'll talk more about it in the morning, after I do my interview thing for Wishes Can Happen. I really need some things to start going our way. It's pretty easy to feel defeated right now and I'm trying not to let everything weigh on me but it's so much easier said than done. Ive been battling with Spectrum all day, Gavin's IVIG infusion supplies didn't show up yet and we're out of supplies. That means we have nothing with which to perform Gavin's infusion today. Anyway, I need this day to end so I can wipe the slate and hopefully start off on a better foot. I'm overwhelmed, exhausted and need to sleep cause I have to get up…

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We had massive, massive meltdown

Gavin's had a rough day today. He was very easily frustrated and couldn't seem to remember much of what he was being told. A good portion of this was Gavin being Gavin and is fairly typical of his general demeanor. Some of it was a bit excessive and not something we see very often from him. For the most part, Gavin has mellowed out significantly as he's gotten older. That doesn't mean we don't have problems. Tonight, our internet went out again. Spectrum has to come back out in the morning because they need to replace the modem with a different model. Too many people are having issues and it looks like they are replacing them with a different model. It's free so I don't really care what it is,…

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Guess who doesn’t like changes in routine?

Plans have changes a for the rest of the week. Nothing significant but it's still a change nonetheless and guess who doesn't like change in this house? That's right, everyone but me. I had prepared the kids for a certain schedule and while it's better that things got pushed up, it was still a variation from what they thought was happening. That said, Spectrum has already come and gone this morning. They were here before 8AM and the guy was really cool. Vivint is going to be here anytime in the next few hours and that's the big thing for today. We may need to get a whole new panel but we'll see what happens. The other thing that's changed is our participation in the Wishes Can Happen Wish-A-Thon. We…

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Here’s what happened at my doctor’s appointment today

My doctor's appointment went amazingly well. Literally everything about my body has improved. My overall cholesterol is under 150, with my bad cholesterol under 100. My good cholesterol is still low but it's doubled and that's awesome. My triglycerides are good as well. ☺ My blood pressure is back down to normal, as is my resting heart rate. Finally, I've lost about thirty pounds this year and that's helped tremendously with a restoration of my body's equilibrium. I feel better than I've felt in a very long time. That doesn't mean I don't have bad days or even bad weeks because I do. While I'm not likely to hit my 40 by 40 goal, I'm going into my fortieth birthday in a better place and I have the momentum to…

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Why I’m so excited to see my doctor today

No one's ever excited to go to the doctors. I maybe the rare exception to that rule because I know I'm in a really good place, at least compared to my last follow up. I've lost thirty pounds, successfully came off Paxil, got back into exercising and dropped my cholesterol by over 50 pts. I'm excited to see my doctor because she never gave up on me and I want to show her that her faith in me was not misplaced. I know it sounds cheesy but I haven't been able to make this kind of progress, well, ever. I'm so proud of myself and I'm ready to figure out my next goals going into the fall. While I'm doing pretty well overall, I still have my struggles both emotionally…

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I was so frustrated I could scream (this is a very sensitive topic)

It's been an insanely frustrating day. Very little went as planned. Some went okay and a small amount has been an absolute disaster. The internet was a nightmare because two rounds of brand new equipment was faulty. I now have to wait until Wednesday to get a tech out here to look over the equipment that still isn't working. I love Spectrum's approach to broadband but I very much dislike the company. The appointments themselves went alright for the most part. Turns out Gavin did have an appointment as well. Not a huge deal since all of us were there already. That being said, Gavin is my main source of aggravation today. I know it's not his fault but goddammit, he can be frustrating. I've been trying to think of…

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