The purpose of art therapy is to not only give kids a chance to be artistic, but it gives the therapist an opportunity to talk about difficult subjects. Yesterday Grace made a flower out of clay and paper (we hung it on her hospital wall). Amanda didn't want to dredge up painful memories for Grace unless Grace wanted to go there, so instead they talked about how strong the flower's stem looked and that it could weather storms. She asked Grace how she felt about being strong when life is hard.
I love that Amanda gets to do that with Grace. After her session Amanda and I got to talking about how life is now that we're home more. I told her how difficult it was for us at first. There aren't a ton of resources to help families cope with the transition. There are therapy groups available through cancer foundations but unfortunately they were all over an hour away, and on school nights. I told her that we actually had to mimic hospital life at home for several weeks until Grace could handle being back at home.
She had some great ideas on how CHLA art therapists might be able to help meet that gap. She had ideas on care packages that could teach parents how to do some simple therapy with kids. But it's hard. It's hard for parents to even put words to their feelings. But I know that kids (even young kids) have a build up of emotions after being in the hospital and struggle to cope with that. Grace struggled.
Overall I was just glad to see Amanda again. I thought I had broke her last year, but she's obviously tougher on the inside than just her smiles on the outside.
Grace was having severe constipation last year brought on by her chemo that damaged her GI tract. I had promised Grace that if she took her medicine then she wouldn't need the hated GI tube, because at the time we didn't know what the root cause was. She was so sick. She could hardly eat or drink and lost weight rapidly and the doctors didn't have answers for nearly two months.
After maxing out every type of laxative at home Grace would be brought inpatient for a GI tube that they used to give her medicine usually used for colonoscopies, to make her poop her brains out. A GI tube, by the way, is a tube they stick up your nose, thread through the sinus cavities, and then leave hanging down your throat into your stomach. Apparently having it inserted feels as bad as it sounds. And I had to pin Grace down while the nurses inserted it, even though I had promised no more tubes if she took her medicine. And she had. And I had broken my promise.
After maxing out every type of laxative at home Grace would be brought inpatient for a GI tube that they used to give her medicine usually used for colonoscopies, to make her poop her brains out. A GI tube, by the way, is a tube they stick up your nose, thread through the sinus cavities, and then leave hanging down your throat into your stomach. Apparently having it inserted feels as bad as it sounds. And I had to pin Grace down while the nurses inserted it, even though I had promised no more tubes if she took her medicine. And she had. And I had broken my promise.
Amanda was there that day that I had to hold Grace down. I was so shaken and upset that after Grace’s therapy session that Amanda invited me to sit with her and talk a bit. She was so patient as I vented all my hurt and frustrations. I remeber saying, “what does it matter how I feel? It doesn’t change anything we’re dealing with.” Amanda took it gracefully but with tears in her eyes.
That was the last night we saw her until yesterday. I really thought I had been too much for her to handle and that she had quit. I’m so thankful that she didn’t because she has such a big heart for the kids here.
Apparently Amanda is a strong flower too.
Apparently Amanda is a strong flower too.
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