My Real-life Struggles: I don’t know what I’m going to do or how I’m going to pull this off
As a full-time caregiver, I'm really struggling at the moment and talking about it helps.
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January 5, 2019
I’m so heartbroken tonight
Lizze and the boys are in bed. I'm with my parents and siblings, sitting with my grandfather. This is fucking awful and it's so hard to bare witness to someone leaving this life. We sat the boys down and explained what was happening. They were able to visit with him but Emmett is taking it really hard. Elliott is internalizing everything at the moment but he will likely breakdown as soon as he let's his guard down. Gavin is completely obvious and unaffected. I took everyone home a couple hours ago and I'm not sure what I'm going to do. I'll probably eventually go home but it doesn't feel right to do that. When my grandmother passed away fifteen years ago, Lizze and I left the hospital and didn't make…
January 3, 2019
Praying the @clevelandclinic can help my wife
Lizze and I made it to the Cleveland Clinic's Neurological Center for Pain. We actually made it 10 minutes early and considering traffic, that's a miracle. Lizze and I have set a goal to find at least some answers but also some relief from her constant, crippling pain. We need to get the medication situation straightened out immediately. Wish us luck but also know that she's in good hands with the Cleveland Clinic.. ☺
January 3, 2019
Helplessly watching as my wife suffers is absolutely awful
Lizze is in rough shape today. This migraine is relentless and you can see that it's taking its toll on her. She's absolutely miserable and there's nothing I can do to help her. It's so bad she can't be touched. There's not anything I can do but get her to her appointment today. The pain makes her sick and unable to eat or sleep. I'm hoping that we can find something that will help her get some relief. We have an hour plus drive to Cleveland today and she's not in a place to endure that. Unfortunately, it's the only option and it's important that we get there. I fucking hate that I can't help her with this. No one should have to live in this much pain and if…
January 3, 2019
I’m feeling utterly defeated and desperately needing to catch a break
I'm feeling incredibly defeated today and there's a number of legitimate reasons for that. It's important to put things into context so here's a but of background. Life is tough for my family on a good day. Including myself, there are five people in my immediate family, and four have special needs. All four are in various places on the Autism Spectrum. Three struggle with serious anxiety that impacts their daily life. Three have ADHD. Three have serious sensory processing challenges that interfere with their daily life. Two have asthma. One has food allergies. One struggles with a very rare fever disorder. One struggles with Schizophrenia, Childhood Disintegrative Disorder, significant cognitive impairment, Common Variable Immunodeficiency, an extremely rare Autonomic disorder, epilepsy, neuromuscular issues, a blood disorder, Ehlers-Danlos (possibly vascular) and…
January 3, 2019
We’re losing my Grandfather
I got up this morning and headed to my parents house to sit with my grandpa. It sucks watching someone slowly pass away but if I have to find a silver lining, it would be that I'm reconnecting with cousins I've not seen in a very long time. As awful as all of this is, it's brought all of us together. When my grandmother passed away, over ten years ago, we just sorta drifted apart. It was really nice to see everyone that I've not seen in a really long time. Anyway, the boys are with Lizze's parents for right now. Lizze is now home, trying to hide from all forms of light. Her migraine woke her up very early this morning and has been relentless today. I'm spending as…
January 2, 2019
We’re just going to have to adapt today
We're having to adapt to a relatively fluid situation today. The original plan for the day was straightforward and simple. All I had to do was take Elliott to his appointment with behavioral health at Akron Children's Hospital. After that, we had family therapy. I mentioned in a previous post that my grandfather has been placed in hospice and we're not looking at a great deal of time. I need to be available today to help my Mom with whatever she may need. I'm unable to be in two places at the same time so we've made alternate arrangements for Elliott's appointment. Lizze and her Mom will take Elliott to his appointment. Gavin and Emmett were originally going to go with them. Unfortunately, Emmett woke up this morning in a…
January 2, 2019
A rough start to the new year
I welcomed the new year alone and battling insomnia. Lizze pooped out about 9 PM, shortly after the boys went to bed. It wasn't exactly how I wanted to ring in the new year but there were reasons why I was okay with it. Lizze going to bed at 9 PM, when we had plans to celebrate the new year together could sorta be annoying. Unfortunately, she's been struggling with sleep lately and working hard to get back on a healthy sleep cycle. Her falling asleep at 9 PM is a very positive thing and frankly, it's a massive relief to know she's actually getting sleep, when she should be getting sleep. I watched a few episodes of Supernatural and did some writing. Sleep eluded me for a couple of…
January 1, 2019
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