Sunday, August 31, 2008

Walking In CHLA

Pablo changed his mind, and Polly is now going to spend the night Monday. Jo Ann is in bed with him as I write this from home. P is asleep, and Jo Ann has just signed off for the night. I bet they are going to get a great night's sleep. It was that kind of day.

We took a long long walk today in the back halls of the fourth floor of CHLA. Pablo is walking very well, and is getting stronger by the hour. Just as we were heading out for our walk, our nurse came in an offered to pull out Pablo's port, and the two thick I.V. lines that go to it. The line had to be changed today, and the timing worked out so we could walk with ONLY one tube coming off P's body, his kidney drain. He's down to only those three tubes. This was a TOTALLY cool treat, and got his spirits and stride up.

The other surprise we got while walking the mean hallways of 4 West? Peter, Brie and baby Lennon came to visit, and tracked us down in this super off-the-path hallway. No idea how they found us, but they did, and it was soooooo great to see them. They've been in New Hampshire all summer; seeing them made me feel like life is coming back to normal. They are back just in time to gear up for P's chemo restart. Peter and Brie and little Lennon are family. Just seeing them, sharing a Play-Doh sculpting session with Peter and Pablo, going to dinner with them this evening, was moving. At dinner we talked about a load of stuff that is impossible to talk about. Stuff I haven't talked about here, even though I've talked around it a lot. Those two are compassionate listeners. On the other hand, when the topic came to where we are getting our fears, terrors, questions, and freak-outs heard, vented and worked out, there was no mincing of words coming from their side of the table. In a loving, but direct way, they told us we need to seek support around the emotional and psychological pressures of being cancer parents. We both have our practices and places where we get support. But I know what P + B were saying: maybe it's time we look into a cancer-specific support resource. We are up for it, and I am going to look into it tomorrow.

Speaking of emotions in motion, Pablo has been getting very sad if Jo Ann or I leave the hospital. When I left this morning to go to church with Jo Ann, he got really busted up. The same thing happened when Jo Ann and I were leaving for dinner. He's never really been like that. This morning, Patricia came to stay with him, and she consoled and played with him. When we returned, Patricia told me that after a few minutes, he was OK. I wasn't. The whole morning, I felt a deep sadness. Parents of ill kids have a natural instinct to give their child whatever he or she wants. I read that in a book today. So, my instinct when he started crying for me not to leave was to stay. Drop everything. Jo Ann would have understood. She probably would have come up in the room and skipped mass. I opted to take a deep breath, and go.

We've been giving Pablo almost anything he wants since his cancer diagnosis. He doesn't want for crazy things, so this hasn't been a major issue. When it comes to giving Pablo us, it's heart-wrenching to say 'No' when we are pulled from his room to go to the outside world. What do we do when he begs us not to leave? Stay, and put off our valuable recharging time? Or do we go, and trust that Pablo's emotional goodbyes are part of the natural evolution of growing up, and that he will be OK? For me, I remember that intense longing for my parents. I'd all but forgotten it until this morning. My longing was centered around a bitter, ugly divorce–a far cry from the biological war going on inside Pablo's body. Yet it yields the same results for the child: the stomach-drop feeling of fear, shortness of breath, a choked-up throat, and grasping at Mommy or Papa, trying to hold us captive. I can't believe I was able to type that description. I was writing about myself as a five-year-old in 1977. Pablo's look and actions are exactly the same as mine were 31 years ago.

Back in reality, things got much better. The night ended sweetly. After dinner, we returned to the room and hung with P. Since Jo Ann was staying, he had no problem seeing me to the elevator. He and Polly walked with me and waited til my car came. While we were waiting for the lift, Pablo gave me a giant hug and two—two!—kisses. I'm so glad I went back up to his room. Going in for the second goodbye was wonderful. And now I can sleep without worry and heartache.

On that note, I wish you and yours a good night.

1 comment:

Unknown said...

Being a cancer survivor, I found being in a support group enormously helpful - it was a sanity saver. It made me realize I was not alone, that there were other women travelling down the same road as me. That was huge for me....
I'll be thinking of you all tomorrow, with positive energy all around...