I wish I had the energy to write everything that I need to say but I just don’t.
This week has been a rough one.
The amount of disheartening events that have taken place range from devastating diagnoses to commentors that have gotten the better of me.
The news about Gavin and revisiting Ataxia-telangiectasia is crushing for me. Knowing that it seems more and more likely that this may be the case just breaks my heart. Will knowing for sure change the outcome? No it won’t.
Will knowing for sure change how we do things? That’s a good question.
This isn’t easy to think about, let alone talk about. However, I feel that it’s an very important part of our story and I want to share my feelings, thoughts and opinions.
If I knew that this was officially diagnosed, I would change many things.
For starters, there would be a shift in how we handle doing things with him. I think the focus would shift to quality of life. The reality is that this condition is terminal and he would likely not live past his twenties.
At this point, I just don’t know what to think, feel or do.
On top of this, the Cleveland Clinic has confirmed that Lizze is in menopause, at age 32.
This is devastating for her health but also her emotional state as well. There are many concerns for the future and many problems that are already present.
The amount of travel, time and money required to make it through this is something I don’t even want to think about.
I’m completely and totally lost. I’m overwhelmed and losing hope. I have to find the strength and courage to move forward and I just don’t know how much of either I have left. 🙁
Right now, all I wanna do is scream at the top of my lungs and hit something.
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I’ve got nothing to offer but love and support from NC. I wish had the words to ease your stress, or was close enough to offer occasional respite.
Rob, so sorry. I wish there was something to do to help you through this hell of a nightmare. One breath at a time, I guess breathing is better than not breathing, right? Be thankful for just life in the basic form, you’ll get through this, God willing’
I totally can empathize with you. Just know you are not alone.