A Day of Ups and Downs

On the upside of things, another good day for I. and I on the behavioral front! Just a wee bit of testing but when she saw that I meant business, she stopped whining, talking back, and disobeying. To make sure I wasn't adding to the problem, I allowed her to choose between 2 healthy options for meals and let her participate more in preparing her meals which she enjoyed. She and I enjoyed each other throughout the day and again, even she appreciated the smoother relationship. I pointed out to her how well she listened to me and behaved and how fun it was that she and Mommy got along so well all day long. She was sitting on my lap when I told her this and her face lit up in a happy smile and gave me a big, enthusiastic hug. Yay!

The hard part of the day was that I was able to go visit Mark in the hospital this afternoon for a couple of hours. I was really happy about getting to see him and I was glad to see him but it was a tough visit. For one, I haven't seen him since mid March because he's been putting me off and I've been trying to respect his need for space. So seeing him today with just his hospital pants on was a shock. I'm used to the tubes coming out of his stomach and all the things he's hooked up to. What was shocking was how thin he was. His upper arm is about the width of my wrist and there is just nothing left on him but skin. I almost teared up when I saw him because he looks like one of those pictures of concentration camp victims. I just wasn't at all prepared for that.

On top of that, this afternoon they had a meeting with all the doctors and have decided that it's time for hospice to step in and start helping at home, keeping him comfortable and try to keep him out of the hospital as much as possible. My heart broke a little hearing that even though I know it's in Mark's best interest and I don't want him to suffer more than he needs to. It was just hard to hear. His liver just cannot take anymore - between the numerous tumors (2 new ones discovered this week) and all the narcotics and medications it's having to process, his liver is barely working at all.

Three other friends of his came to visit while I was there and we were all laughing most of the time. It was good to see Mark smile. When it came time for me to leave, I told him I was going to be coming around more often and Jodi said "April, you just check with me on when is a good time, don't worry about Mark." I said to him with a smile, "Did you hear that? I'm not going to try and go through you any more to come and see you because I never see you when I do that. I don't want you to think I'm being rude but that's just how it needs to be." And he said that yes, he heard what Jodi said and that it was fine. What really touched my heart was that Jodi asked I. if she wanted to give Mark a hug goodbye. Even though he was naked from the waist up, skin and bones, and tubes coming out every which way, I. went over to the bedside and gave him a really good hug. I mean, this is a kid who, if she doesn't want to do something, has no problem stating that and also asks a ton of questions. But she hugged him and later on the ride home asked about the tubes in his tummy. I really thank God that he gave I. the compassion to get over the appearance of Mark and show him true affection. That actually brings all my emotions to the surface, it just touches me. Then I hugged him tightly and was struck with how small he is now in body size but not in the amount of will he has left.

This is such a tragedy - he just celebrated his first Father's Day last month. I know I have the strength to be there for him for as long as he needs me. It may tear me up inside but I am not afraid of being around the end times for someone, especially him, and only want to make things as good as they possibly can be for him at that point. It really makes me overwhelmingly sad though...