My circadian rhythms are one big mess all ready. I fell asleep at 5pm. I just couldn’t keep my eyes open any longer. Now, it’s 3:30 am, and I think it’s a great time to get up, watch some tv, and write. So if you’re wondering when a good time to call would be, your guess is as good as mine.
Just kidding, I’m most alert and socialable between 8am and noon.
Xander won’t talk to me. He’s figured out that I am gone for the long haul. I talked to him on the phone yesterday and he asked if I was coming home and bringing a toy (like I usually do when I go away on vacation).
When I told him no, that I was away at the hospital and maybe he could pick out something special when he came to see me, he stopped and hollered “I don’t want to talk about this!”
Whoa. I’ve got the picture.
Then, he very sweetly and calmly said, “Bye mommy. I love you. Talk to daddy.”
Talk about a minor mood swing melt down. He’s entirely entitled to his feelings. I would just like to know how to help him express them. It’s a little hard to facilitate an open dialogue when I’m 200 miles away, and his constant fear is that I’m going to disappear forever.
When Jon and I were both sick, he would cry and ask “who’s going to take care of me?”
He was so scared that both of us were going to die and he’d be all alone. I hope that feeling doesn’t serve as the foundation of his relationships in the future. I’m worried it may. He’s only 5 and this has been going on a long time.
I called the school to have him meet with the guidance counselor once a week at least. I’ve communicated with them as clearly as possible what we are going through. The rest is in their hands right now.
X has seen a handful of therapists all ready. I’ve subsequently fired each one. I have high standards, probably too high, for the people who are going to assist in molding his psyche.
I’ve found surrogate caretakers for X who are like me: Friends from the neighborhood, mother’s of kids X’s age. I think the stability seen in their homes is important. They treat him like one of their own. These people are priceless.
I do know X was bilking the sick mom thing for the first couple weeks of school. He was refusing to write his name and finish homework that everyone else in the class was required to do. He’s been writing his name for over a year now. I have the evidence in his scrapbook.
I caught him. I spoke with the teacher. Letting him get away with things is not doing him any favors. Give him structure and normalcy. He’s a smart boy. Smart enough to try to get away with what people will let let.
The separation and isolation from him has been the worst part of this process so far. Far worse than packing my things and trekking 200 miles to a strange city to get treated at a strange hospital by people I barely know. I can roll with the punches when the situation affects me. It breaks my heart when my problems affect him.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."