Day 29- Searing White Hot Pain

Today, as every day, is filled with ups and downs. I think that rather than look at my mood though it probably makes more sense to look at my pain level. When Shayna was first diagnosed with rheumatoid arthritis and throughout her various injuries and surgeries, we learned to ask her about her pain level on a scale of 1-10.  These days for me, there is the background pain that is just beneath the surface, but which I can block out by thinking of something else.  Then there is the white hot searing pain that comes throughout the day- often completely unseen.  So yeah, pain level. I think I need to start thinking in terms of that.

The pain at times seem unbearable. Today I am having a pretty good day managing the pain except for when I have to do certain tasks or dwell on certain things. Today the thing that drained me was contact AT&T to cancel Shayna’s cell phone line. That just ripped me apart. I am exhausted by 3 o’clock. I have to stay in the office though because there are two big deals I’m working on. So, I push through, make a couple more phone calls, get a couple of more things done. By 5, I’ve hit a wall though. I find my way upstairs to just lie on the bed for a while. Ty’s there. She’s reading.  She’s having a bad moment, too.  She breaks down and starts crying. I hold her and try to comfort her, but there are no words. We both know this sucks and this is going to suck and no matter how we try to spin it, it just sucks.  I tell her I’m sorry. Sorry she has to go through this. Sorry Kayla has to go through this.  Sorry that our world will never be the same again.  We both have faith that Shayna is in a better place. I am even coming to the belief that we sign up for the rides we get here on Earth having a good idea of what is going to happen, what type of lives we’re going to live.  I haven’t always believed that, but I am coming across the idea more and more and as I look back at my life, I can see how that might be the case.  

For now that brings little comfort. We’re both looking at what could potentially be a long stretch of life without our baby and we just don’t know how we’re going to face it.  Right now our pain levels are both at 10.  She says we have to carry on though. That is what we agreed to do. That is what we recommit to every day. “Do we?” I probe.  Do we really have to keep doing this?  Right now, in this moment, I just really don’t want to. I’m just exhausted and not seeing much reason to keep going. She tells me it’s what Shayna wants.  We have to be here for Kayla. We have to be here for each other.  And, yeah, I know I still have work to do here, but right now I just don’t care anymore. In this moment, the pain is unbearable. I can’t imagine going on like this for 10 or 20 or more years.  Seeing others who have made it is encouraging, but it’s also daunting.  How do they do it?  I cry. She holds me. We talk. We realize we can’t make it 10 or 20 or 30 years today.  We can only make it one day at a time. We agree to  just try to get through dinner time for now.  Tomorrow is too far a reach. We dry our tears and head down to make dinner and keep putting one foot in front of the other. The pain level drops to about a 5 and we soldier on.

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