“You okay bud”, Claire Crooks

after a particularly bad coughing bout this is what I hear, she always hears Casey say “Your okay buddy” so today it was her turn, I can not begin to express what an amazing sister she is, always bringing Connor things, making sure he has one of whatever she is into and surprising him with her “bull in the China shop” hugs, the whole thing is so sad, she desperately wants her playmate back, but completely accepts Connor for who he is today, I have no idea what she will do when he is no longer here.  We are about a day away from calling our hospice nurse over as Connor has been extremely tired over the last 48 hours, a very big change.  Today the only time we was really up was from 8:30 (I had to wake him) to about 2, he even slept through dinner.  He woke up for a minute asked me for a hug and then passed out on me.  Same thing yesterday, sleeping through Jimmy’s party, and falling asleep “for the day” around 1 pm.  This could be one of two things, things are progressing (and rapidly which we expect once progression starts again) or it could be an effect of a supplement IP-6 we recently started him on, one of the remote side effects is exhaustion.  We have discontinued the use of IP-6 in hopes to see a more lively Connor, following our guiding principal that anything we do at this point must have a positive impact on Connor’s quality of life and ours supporting him, and him sleeping all day is not that.  The other “Debbie downer” news is we think Connor is starting to get sad from his limitations, I have been noticing it for a while and pointed it out to Casey who started observing it too, as a result, while we are still researching things we have emailed the oncologists about this as this could very will start impacting our decisions on what we are willing to do.  As Claire went to bed, she said “Mama is sad”, you are so very right little girl.

 
And the person who keeps us smiling:

   

  

  

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3 thoughts on ““You okay bud”, Claire Crooks

  1. This love and sadness is heavy & I can feel it. Claire seems to be an endless source of smiles & laughter, but I know that doesn’t begin to erase the pain. Hoping and praying the supplement was a factor and Connor’s less drowsy. Always praying for you and Casey as you live and make choices each day.

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