Read more about the article Parents aren’t supposed to bury their kids
Fragile Health / Gavin / My thoughts

Parents aren’t supposed to bury their kids

I don't do well with funerals, not that anyone really does. I absolutely avoid going to them because I've seen so much death in my life already.  I can't even tell you how much death I witnessed as a paramedic. Eventually, it gets to you and changes you at your core, at least that's how it worked for me.  Thinking about everything the last day or so, I realized one of the biggest reasons I don't deal funerals very well.  In all likelihood, I will one day attend Gavin's. With all he's dealing with healthwise, his prognosis isn't good. Every time I see a funeral, it feels like a kick in the gut, and reminds me how fragile life is, especially Gavin's.  Maybe that sounds strange to some of you,…

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July 28, 2017
Read more about the article I know he’s miserable, but damn
My thoughts

I know he’s miserable, but damn

Things aren't going so well this morning. I'm already not in the best place and it feels like nothing is going right. Emmett is very clearly not feeling well, and is kinda taking it out on everyone.  Emmett's demeanor has everyone on edge, including myself. It's not his fault, and I know he's miserable, but damn.. 

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July 28, 2017
Read more about the article Saying goodbye to a truly amazing woman
My thoughts

Saying goodbye to a truly amazing woman

It's going to be a difficult day today. This time however, it has nothing to do with Autism, or special needs parenting. Today's difficulty is the result of being human.  There are many things about being human that are difficult, but few things are more difficult than the loss of a loved one.  Everyone experiences loss, and my family is no exception. This weekend, we will be laying to rest one of my family's elders. She was/is my great aunt, but she was always just my Aunt Sissy.  I have so many fond memories of the time spent with her. She touched many lives and will be greatly missed. I find comfort in the knowledge that's she's been reunited with the love of her life, my Uncle Cy.  This weekend…

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July 28, 2017
Read more about the article Why lunch was a sensory nightmare
Autism Parenting Struggles / Emmett John / Feeding Problems / Fever Cycle / My thoughts / PFAPA / Sensory

Why lunch was a sensory nightmare

Emmett's still in the opening stretch of his current fever cycle, and he's incredibly difficult to manage as a result. I've mentioned before that when he's in a fever flare, many of his Autism related challenges are exacerbated.  Typically, the biggest challenge during the period of time the flare is active is sensory related.  He becomes so much more sensitive to everything around him.  Making lunch today was a nightmare that resulted in a massive, but relatively short lived meltdown. It had to do with a pepperoni sandwich that wasn't perfect.  Sometimes he likes to make his own sandwich because it must be perfect. I should also add that he rarely ever eats a sandwich because he rarely eats bread. I don't know why it's okay sometimes and not okay…

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July 27, 2017
Read more about the article Surgically removing myself
Emmett John / My thoughts / Sleep Issues

Surgically removing myself

I had a rough time sleeping last night, but my amazing wife let me sneak a nap this morning.  Emmett woke up around 3 am and climbed into bed with us. He was freaked out over a bad dream. He fell back to sleep quickly, because he was glued to my side. I was already having a rough time sleeping because Elliott was using my pillow, and I was really uncomfortable.  I ended up surgically removing myself from Emmett's grasp, and made my way to the couch. Unfortunately, my back is still not doing well and I couldn't get comfortable.  Bottom line, I didn't get very much sleep at all, and I'm definitely feeling it. 

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July 27, 2017
Read more about the article It looks like Gavin might have his wish granted 
Gavin / My thoughts

It looks like Gavin might have his wish granted 

I've mentioned recently that we applied to Make A Wish for Gavin. It's been awhile, we haven't heard anything back, and because he's getting close to the age cutoff, we connected with a local organization.  This is an organization that grants wishes for kids with life threatening conditions.  Lizze stumbled across them in a magazine and sent them an email. We heard back within a couple of hours and a rather lengthy phone interview took place. I'm not going to mention the name of the organization just yet, but when we hear back, I'll share everything.  Over the phone, we designed a wish for Gavin that is pretty amazing. It will involve a 1 week trip to Orlando. We will be staying in a two bedroom condo, and receive tickets…

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July 27, 2017
Read more about the article Counting my blessings this morning 
Blessings / My thoughts

Counting my blessings this morning 

Emmett had an okay day yesterday. His fever hit almost 101°F, which it's anything serious. What you need to remember though, is he's not sick. There's no physiological reason for him to be running a fever.  We had some rough moments, but the boys actually spent a few hours with my Mom.  When they got home, everyone had some downtime. I was able to work on a few projects around the house, and made it through another basket of laundry.  We ended up going to the park again after dinner. The boys were able to Pokémon hunt, and we walked a little over a mile. It may not seem like much but dragging along two kids heavily invested in Pokémon Go is a fricking challenge.  It ended up actually being…

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July 27, 2017
Read more about the article Bathing in the quiet
My thoughts

Bathing in the quiet

I'm a little bummed and frustrated today because I was expecting a package on Monday. It never showed up and still hasn't showed up. I made a trip to the post office and they have no idea where it is or what happened to it.  It's not a huge deal, as it will get addressed but I've been looking forward to moving forward on this project.  Anyway, it's been a decent morning and afternoon thus far. The house has been quiet without the kids here, and it's been nice to just bathe in the quiet.  The boys will be home soon and the noise will be returning as well. ☺ 

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July 26, 2017