Child Life

Something I promised to return to was Child Life. It's a program at the hospital that I think makes Primary Children's unique - at least compared to my other hospital experiences.

The Child Life specialists are sort of like counselors for children that are too young to talk to a counselor. But it's more than that. They help kids of all ages, and the families. I wish I could accurately describe it. They offer play therapy, where they teach the kids about what's happening to them through play, or help them deal with a particular struggle they're facing through play, or just convince the kids to play.

Karen was the Child Life specialist the week we were in the ICS. She was filling in, and I don't know where she usually works, but I was so grateful she was there! She became Matthew's best friend. She would come and see us every day, and she was the only person he would sit up and play with. At first, it took some coaxing, but towards the end of the week, he would sit up as soon as he saw her, and his face would light up. His reaction to everyone else was totally different. For anyone else employed by the hospital, he would scowl, and sometimes yell, whine, or cry. For family members, he might squeak an answer if spoken to, but half the time, he would still scowl. For Justin and I, he would squeak an answer, and sometimes cuddle, but he didn't really want to play. He also tried often to comfort us, which is so sad, because he was going through a lot. But when Karen would come in, he would play. It was amazing.

The first day, all she did was blow bubbles with him. He was so happy that he was allowed to blow bubbles inside that he eventually sat up and played with her. The next day when she came back, she brought a few toys. She let him bonk her on the head with them, and then they threw stuff on the floor. It was pretty aggressive play, and he was the one leading. It worried me a little. She explained to me the next day that it's actually a really healthy way for him to deal with his strong emotions. She said the toys where you hammer pegs into wood, or bop the animals, or things along those lines can be very therapeutic for a child going through something so difficult.

We talked with her when the anesthesia experience was so awful the first time he went under, and she coached us on how to talk to the anesthesiologist the next day, which made it so much easier. She also went downstairs with us, and played with Matthew all the way there, making him so much more comfortable. I always felt like we were her most important assignment. But somehow, I know she made everyone else feel that way, too.

Another thing she did that was really cool was the "hospital buddy." It's a very plain doll made out of fabric, with no face or anything. And she has markers, so the kids can draw a face on it. She also has hospital gowns that fit the doll, and the kids get to choose the pattern. The first day she brought it in, she helped Matthew color a face on it, and food going down his throat into his tummy, and they talked about the food having a party in his tummy. They drew all over the doll, including an eye patch, which he put there when he decided the doll's name is Pirate. It's the first time anyone's ever gotten him to name an animal or toy of any kind. He's always so matter-of-fact, and I was impressed that she got him to do it. Pirate is now one of his favorite toys.

The second day with Pirate, she brought in bandaids, and Matthew tended to Pirate's owies. He got like 10 bandaids. Then they put a bandage on Pirate's chest where Matthew's port had just been placed. Then, they put an IV in Pirate, gave him medicine, and took his vital signs. Pirate's job was to hold still, and my job was to hold Pirate's hand, and Matthew's job was to give Pirate his medicine.

It helped Matthew to understand and cooperate a lot better when the medical staff needed to check him out. Often, he would hold Pirate while they would take his vitals. He learned to ask the nurses to let him listen to their hearts with the stethoscope. He would listen to their hearts and breathing, and then they would listen to his, and he got through it a lot better because he wasn't so scared.

Each unit in the hospital has their own Child Life specialist. The one in the Rapid Treatment Unit (RTU) helps the kids choose a smell for their oxygen mask. She shows them pictures of the operating room. When we had left the hospital, and been home for a few days, then came back for chemo, he had to go to the RTU for a spinal tap. He was scared, because he didn't understand that we didn't have to stay. He wanted to go home. She came in and played with him with a Mister Potato Head, and he felt better.

When we went to the Oncology Clinic (also in the hospital, but a separate unit), the Child Life specialist there heard him crying, and materialized out of nowhere. She is really great with him. She shows him a book or a toy, and talks him through the scary times until he feels better. He has been to the clinic twice now, and both times, as soon as she heard crying, she was right there to help. She played trains just for him to watch while they accessed his port (which is the only needle stick he has to have at his appointments). She read to him, and played trucks for him to watch, and even held the iPhone so I could hold his hand and he could keep watching Spongebob while they removed the needle at the end. She seems to know by instinct how close Matthew will accept her being. Sometimes, she can be close, but sometimes, he needs to watch her play from across the room. She has spent time at each visit trying to understand his likes and dislikes so that she'll have the very most appropriate toys and books ready for him when he comes next time. She's very good at what she does.

I think I've said this before, but I don't think I could say it enough: It amazes me how the people who work in this group (not just Child Life, but all the oncology people - nurses, doctors, the IV team, you name it.) can do what they do, day in and day out. They see so many suffering children. So many suffering families. They find ways to help that you would never expect. They make it as smooth and seamless as possible. They take care of their patients' mental needs right along with their physical needs. They make it so that cancer isn't nearly as scary as it could be. I don't know how they can motivate themselves to keep doing it. They must be drained at the end of the day. They work in such a stressful environment. I have such respect for them, and I thank heavens that they can find it in their hearts to take care of us.