So, I am not going to report everything that happened in the last few days, just the highlights. I just didn’t feel like writing since Friday, but here it is…..
Saturday and Sunday were both good days. Will and I went to Peddlers Village and did some retail therapy. Always a fun time for us. Then Sunday we went ice skating at an awesome outdoor rink right on the edge of the river. We had so much fun and he pushed himself to the point of sweat pouring down his head. I was so proud and really saw what this program is teaching him. Meanwhile, I was in so much pain. Haven’t skated in many years and Will said to me…”You know mom, if you were in my program you would learn coping skills for this.” Well how about that! Too funny. Here are some pics.
On Sunday afternoon I spent a lot of time working on what Will’s schedule will be when we are discharged. I reached out to a lot of different people, set up tutoring, set up classes and activities so he has a nice full schedule. I was really happy with all the incredible support and ideas I received from all the people I touched base with.
Sunday night Will started to get a bit stressed again, but we talked a lot and he seemed to be ok. He got up and went in on Monday begrudgingly. I was feeling anxious all day about how his day would go and was just hoping he would have a good day. When I picked him up he was ok but exhausted. We headed back to the house and he wanted to go right to the kitchen to eat and relax. We ended up playing cards, games, and crafting with several of his new friends for quite some time. It is so nice to see him just laugh, joke, and be a kid.
Tuesday he went off to his program just fine as well. Again, I felt stressed at how his day would go. We don’t get any input from the team except for once a week and this not knowing is really wearing on me. I picked him up and he looked sad and mad. Uh Oh. He wanted to go right to the kitchen again to hang and play games. He seemed to have a lot of fun, but when we got back to our room the melt down began. He finally started expressing that he is flat out mad. Mad that he had cancer, mad that he isn’t normal, mad the he has to do this program. He had a good cry and we were able to talk some more. He was so tired he went right to sleep.
This morning he was sore and still tired, but he got up and went in just fine. I got in a few more encouraging words and advice at breakfast and hoped for the best. We had our mandatory group parent meeting this morning and all of us parents had a lot to say about feeling so in the dark. I think we all felt better after expressing our concerns, and I walked out of there hoping they were truly heard.
My friend Brenda and her girls came for a nice visit today so it was a wonderful distraction to not worry about Will all day. We went to the Liberty Bell, Independence Hall, and Lunch. We got over to the hospital a bit early to pick him up and the PT therapist wanted to talk to me. My heart sunk to my stomach, but she wanted to tell me how great of a day Will had. She said he pushed himself and she saw some panic at certain points when tasks got really hard, but that he used his coping skills and talked himself through these tasks with success. She also apologized for the lack of communication as she is not used to hands on parents who want to work as a team. (So, I guess my concerns were heard.) I was so happy and relieved. He came out of there with a smile and we had so much fun hanging with Brenda and the girls. They played air hockey and played with the dog from Pet Therapy.
By the time they headed back to NY Will was shot. He hopped a shower and snuggled right in for the night. Here’s to another great day tomorrow!
One Grateful Mom,