There’s only 1 thing that could make things worse and it just happened

I have been sharing how stressed out and worried I am over Gavin's current immunological crisis. I consider it a crisis because there is a nationwide shortage of GAMMAGARD. This medication literally replaces his broken immune system and keeps him from getting sick or worse. Until we resolve the issue and solidify a working plan for moving forward, I consider this a potential life threat and therefore a crisis. The only thing that could make this particular situation worse is if Gavin were currently sick. Unfortunately, that has come to pass because Gavin is currently sick with whatever Emmett and Elliott have been fighting off. We're probably looking at a simple cold but when your child has a severely compromised immune system, only one dose of GAMMAGARD left and no…

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I’m torn

I'm feeling a smidgen better than I was last night, although I didn't fall asleep until about 7 AM. From there I got a few hours before waking up and getting myself moving. I don't want to sleep the day away for many reasons but the most prominent being a desire to not perpetuate the problem by sleeping all day and not being tired at bedtime. That's my goal anyway. Who knows if it's going to actually work. Everyone seems to be in a mood today and I'm not sure why. I also don't know what I can do to sorta break everyone free of their moods and redirect us onto a better course. I'm feeling torn between being responsible and being a bit more spontaneous. I don't remember if…

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The 2 main reasons I feel like I’ve failed my family

This is one of those posts that some people will complain about for whatever reason. Maybe they feel it's too negative or that I'm just looking for sympathy, but whatever. I'm writing this because keeping it inside is eating me alive and the only way I know how to process these feelings is to write about it. I feel like I'm failing my family and whether it's true or not is irrelevant because it's how I feel. As a parent, we all want what the best for our kids. As a special needs parent, there are so many things outside of my control and so many burdens I can't take away from my kids, it makes everything else feel so much more important. When I can't take away my kids…

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There’s 1 battle I’m fighting that I haven’t spoken about

I've talked in great detail about my battles with depression and the challenges I face as an Autism parent. Those things have sorta drowned out everything else and that includes a major battle I'm fighting that makes all of these things worse. For the last few weeks, I've been struggling with insomnia. People deal with insomnia all the time and I'm not entirely new to insomnia either. During my withdrawal from Paxil, I went through a period of time where I simply couldn't not fall asleep. It was a rough go for a little while but as quickly as it appeared, it was gone. Out of nowhere, it's come to visit again and like any unwanted houseguest, it's causing problems. As an Autism parent, I don't get enough sleep as…

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My #1 take away from today

I'm going to sum things up for today pretty quickly because I'm really tired and hope to actually sleep tonight. My number one take away from today is pretty straightforward but also very positive. I spoke with legal at Akron Children's Hospital and seem to think that gaining medical power of attorney will work. They need to double check a few things and they will get back to me. This is enormously positive news and while we don't know anything for sure, it sounds like it will all work out. ☺

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Do you ever feel so overwhelmed you can’t breathe?

As a Autism parent, my status quo is stressed out and overwhelmed. I think you'd be hard pressed to find an Autism parent who doesn't feel this way from time to time. It's important to understand that many of the things that we worry about on a daily basis as Autism Parents, are unique to Autism parents. That can make it harder for people to understand. Lately, I've had days where I'm so overwhelmed, stressed out and worried about things I have zero control over, it feels like I'm drowning. Other times it can feel like I'm being crushed under the weight of everything I have to carry each day. Getting up in the morning can be very difficult sometimes because I already know that today will be more of…

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This 1 idea may solve our current guardianship difficulties

Gavin had therapy tonight and while some of the time was spent on Elliott, the rest of the time was spent on Gavin. There are a million things to worry about in regards to Gavin and it's impossible to take them all on at the same time. We have to triage everything and focus on what's most important in the moment. As of yesterday, the priority was getting guardianship over Gavin in order to continue taking care of him, as he's legally an adult. We were hit with the reality that we are going to need an attorney that we can't afford and I was feeling a great deal of stress as a result. That was a newly minted problem and we hadn't even begun to process it and we…

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1 phone call has sent me into a complete panic

I wrote about frustrations and explanations for why guardianship hasn't been completed for Gavin. I was explaining how things keep coming up that force us to reprioritize everything. See: I'm going to need an attorney. Not twenty-four hours go by and we're slammed once again, with yet another potentially life threatening issue. I received two very early morning phone calls today. One of from the pharmacy responsible for managing Gavin's IVIG infusion supplies and the other was from his immunologist. Turns out that there is an ongoing, nationwide shortage of GAMMAGARD, the life-saving medication that consists of donated antibodies from thousands of people, used to provide Gavin with a temporary, functional immune system. Gavin has something called Common Variable Immunodeficiency, see What the Hell is Common Variable Immunodeficiency. In laymens…

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