Oh man. The kids are not in a good mood this morning. Emmett is quite unhappy or maybe he's just stressed out. It's hard to tell the difference sometimes. I love them both to pieces but I'm really glad they aren't coming with us today. It would be rough on a good day and they are clearly not having a good day. Hopefully, things will improve for them as the morning goes on.
I was already on edge about our trip to the Cleveland Clinic this morning but our plans took a sudden, unexpected turn a few hours ago. First of all, I've said this a million times but it's worth saying once again. As an Autism parent, I have to be flexible. My loved ones with Autism don't like change but I damn sure better be able to adapt or life is run me over. The plan for this morning was a simple one. Lizze's Mom was going to pick the boys up and take them to school because we can't be in two places at once. We would take Gavin to Cleveland, deal with whatever resulted from this appointment, get his bloodwork done in the way home, hit the BMV for…
I'm really nervous about Gavin's neurology appointment at the Cleveland Clinic in the morning. To be completely honest, I'm sick to my stomach over it. I love Gavin's doctor and I love the Cleveland Clinic. Without hesitation, I can say that they are a large part of the reason Gavin's still with us today. That's not something I could ever pay back. The appointment tomorrow is all about Gavin's problems with his legs. He's been complaining on and off for awhile now, that his legs stop working. It's tough to understand what exactly he means by that because I'm not sure he knows how to describe it or that he understands what he's talking about. Essentially, he's saying that his legs stop working because they aren't doing what he's telling…
I feel like I slept pretty okay-ish last night. I went walking first thing this morning while Gavin was doing his IVIG infusion. We hit an unexpected snag in today's plans. The idea was to walk and then take Gavin to get his bloodwork done.. Unfortunately, the lab was closed today. I guess I wouldn't have thought they would be closed but they were. This isn't a huge deal but it cuts us closer to the deadline for getting his labs done. His Clozapine runs out on Wednesday morning and son we absolutely must get them done tomorrow. It's already going to be a busy day because of Gavin's appointment with neurology but we're going to have to make it work. I hate when we cut things this close with…
Today is a very special day. Lizze and I are celebrating our 15th wedding anniversary. We've been married for 15 years today. That's crazy for a number of reasons. First of all, times flies. Secondly, there was a time not too long ago, where it looked like our marriage had ended. It was the darkest, most difficult time of my life. Lizze and I spent 2 years apart before reconciling. We've been back together for a few years now. Life had gotten in our way. Lizze had suffered caregiver burnout, although we didn't know that at the time, and it seemed like our world collapsed. While things aren't perfect, we're doing well and have learned a great deal in the process. We must take care of ourselves. We must take…
We had a pretty good day today. I know I told you I was probably going to skip walking but I went anyway. I was tired and not really feeling all that well but I'm glad I went. ☺ It's really important to me that I keep this up, especially when I don't want to. I'm doing so much better in regards to selfcare and I don't want to screw that up. I mentioned that we would be going to my sisters for a family cookout for Labor Day. Turns out it was also doubling as a birthday party for me. I wasn't expecting that but it was really nice. My in-laws were there and my aunt from out of town was there as well. Of course my parents and…
As many Americans are already aware, we're halfway through a 3 day weekend. We're having a family cookout today in honor of Labor Day. It's going to be hot out and the kids are probably going to be a handful when we get home but we don't get to see everyone all that often. I have to make it to the store before we have to leave because I need to buy a new hat. The one you've seen me wearing in all the pictures literally fell apart like paper when I tried to wash it last night. Being among those who sport a shaved head, I need the protection from the sun. Anyway, I don't think I'm going to end up walking today but I will in the morning.…
You may or may not know this but I have quite a bit in my plate. I try so hard to do right by everyone in my family but there are times I become do overwhelmed by their needs, I feel like I'm being crushed. I'm feeling crushed right now by the weight of everything. Lizze is living with high functioning Autism, PTSD, ADHD, chronic pain, fibromyalgia, depression, ehlers-danlos, bipolar disorder and untreatable daily migraines among others. Gavin is living with chronic pain, childhood disintegrative disorder (very rare, regressive form of Autism), common variable immunodeficiency, epilepsy, schizophrenia, asthma, and a very rare autonomic disorder among others. Elliott is living with Autism, sensory processing disorder, depression, severe anxiety, ADHD, food allergies and possibly bipolar disorder. Emmett is living with Autism, anxiety,…