Sleeping

that is basically what today consisted of, he slept and slept and slept.  He woke up around 11:30, ate his only meal of the day, had some awake time that consisted of mostly blinking, some sounds, and a very clear “bye bye” to my dad, but fell back asleep and has been sleeping since.  Somehow in the midst of today Casey became “okay” with what is happening, I use the word “okay” loosely when I say this, because in the sense Casey is “okay” today, this is how I was “okay” in January.  I can tell you though, no matter how “okay” you are, you are not ready, last week showed us that, but last week could have also been Connor’s selfless way of helping us prepare.  While his physical body is here, very little of him still is, it is easy to forget that when you are with him every day, but recently due to a very generous local photographer who has loaned us her software to make some videos of his life, Casey and I realize our Connor, our full of life, strong willed Connor is not the one we hang out with all day, everyday, the one we are just trying to keep comfortable.  To hear Casey is “okay” is a relief beyond words, I was okay in January because I truly lived everyday of the treatment, it was horrible, I understood its side effects and what the late effects would do to him, considering it came back so quickly I knew how it would end, I had read enough studies, and was not willing to subject him to more, all I wanted was for him to live, and feel loved.  Casey at the same time moved into super research mode, he didn’t get to spend the last year like I did, caring for Con, so I told the social workers I needed to let him do this even though I knew the answer would always be no, we heard no, time after time, one trial at Sloane had his last hope, tonight we learned Connr’s tumor did not have that mutation, in the next two weeks though we should find out where exactly the mutations are and more importantly if there are any genetic mutations we can test for, but tonight as Connor sleeps we are “okay” not okay with how all of us were robbed, but okay with the fact that this is not the life Connor deserves to live, and we are hopeful one day the videos and pictures we have been pouring through will be our what we remember, not this hell (I watch the videos blankly, I honestly have no memories precancer, I guess there is just not space, hoping with time the cancer gets wiped away and the first two years replace it).  Casey has now moved from cancer research to research on if it is possible to clone Con without the cancer, lol!  We still have no idea where in this journey we are, just that it is closer than we thought.  We have started reading books to Claire to try and prepare her, she tells me I am wrong that Connor is sleeping, but will live with her and hugs him every chance she gets.

  
And Amanda helped us get what will probably be our last truly awake and loving family pictures yesterday.

   
   

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3 thoughts on “Sleeping

  1. Oh Erin & Casey. I am sure you want to make everyone understand what your okays mean, but we all know you would go to the end of the earth if it meant a different outcome for Connor it is just that even that isn’t enough. You both have to chart your own path through this and just be waiting for each other when you meet up again.

  2. LOVE, FAMILY, COMFORT. As I read your blog, I realized you ARE and WERE always doing all the right things for Connor and Claire. What a strong little boy you have and your daughter, she will be strong, too because of all the LOVE, FAMILY, and COMFORT you have given them. Just remember you and Casey need that, too. Hugs and prayers coming your way.

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