Wednesday, October 2, 2013

meeting the clown

I was asked to share what our experience has been with medical clowns, and I wanted to share it here on our blog as well. 

If you're like I was, you likely have very little idea what one is and how amazingly helpful they can be, especially for children who have a lot of anxiety in medical situations. I wish all hospitals had them!

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It was a dark and dreary day...

Actually, I don't remember what the weather was like. But, if Emma's emotions could be compared to the weather, it would be a dark and dreary day.

We were new in town, coming here from Texas to Cincinnati Children's in an effort to save Emma's life. We were sitting in a little conference room, with just a table and some chairs, finishing up a meeting with our bone marrow transplant coordinator and about to start meetings with a couple other ladies.

Emma had already had a busy day of doctor appointments, and the last thing she wanted was to be sitting in there, staring at the wall, while I talked to others about her least favorite topic - her health. Seeing that Emma was bored, and we still had a long way to go, our transplant coordinator left the room, telling us she was going to go get a craft for Emma to do while we talked.

A few minutes later, she came back with a clown. Emma and I looked at each other in surprise. I could see her eyes were bright, and she was tucking away a little smile as she watched him walked towards her.

I had no idea of the impact that this very first meeting would have on Emma, or me as her mother, or the impact it would make in her hospital experience as a whole.

After spending 45 minutes with Pauly the clown, and after learning how to hold a spinning plate on a stick, how to stand a feather on her hand, and how to toss rings back and forth, our shy little, 10 year old Emma - who never wants to be at the hospital - didn't want to leave. He invited her to a circus activity that they were having and gave me his card with their info on it.

Emma was so excited. She wanted to go so badly. I felt like the worst mother in the world when I had to tell her no. She couldn't go because she was in isolation for a bone marrow transplant. She tried to act like she was okay about it, but soon she was in tears, sobbing her little heart out that she couldn't see Pauly the clown anymore. All I could do was hold her and feel like crying myself.

Back when Emma was born, she had open heart surgery at four days old. Just days later, she was diagnosed with Fanconi Anemia (FA), which is a fatal genetic disorder that causes bone marrow failure and cancers. A bone marrow transplant can extend her life, but as of yet, there is no cure for the cancer portion of her disorder.

Any chance of a normal life poofed away into non-existence at that diagnosis. She has had a life full of doctor visits, specialists, blood test after blood test after blood test, bone marrow biospies and aspirations, and various other medical interventions. While we've tried our best to give her control and avoid unnecessary appointments, it's a lot for a little girl, who just wants to be normal, to go through...constantly.

She's learned that she has no control. Picking which arm to have them take her blood out of isn't exactly the choice she wants to be forced to make all the time. Being in a medical environment, when she hates it, is suffocating for her. Then dealing with seemingly harmless comments from them - things like, "This really doesn't hurt her" while she's screaming at everyone that it's hurting her - and it's obvious it really does - they have unintentionally created a world for Emma where even her feelings are being denied by them. Where she truly has almost no voice. No choice. No freedom. No way to escape.

As her mother, I do my best to give her as much say and choice as I can. I do my best to protect her from them. Since being at Cincinnati Children's, I haven't had to do that nearly as much as before (the people at this hospital are incredible). But, in our previous hospitals, I have sometimes had to literally standing between them and her and not let them near her until I see that she is okay. I feel like a momma bear who has to protect her cub. I try to be her voice when she's too overwhelmed to speak - making them take their time, making them slow down, making them treat Emma AS EMMA and not just another patient to rush through. When she's screaming and needs someone to hear her, I hear her. But it's not enough.

All combined, it's left Emma with extreme anxieties in medical environments.

We've done play therapy. We've talked with child life. They've been very helpful, but her anxiety remains. At one point, in an effort to help her anxiety, we even went against the medical recommendations for her illness and avoided the hospital for a long period of time...once. If six months can be considered a long period of time. We've tried giving Emma as much of a break that we could. But, with kids like her, you can only do that so much before you're forced to go back. Where, if you want your child to simply remain alive, you have to go back. There truly isn't an option to give her freedom from that.

So, holding Emma in my arms, as she sobbed over Paul, I knew something needed to happen. I knew there was something special about what he had done for her. At that point, I had never heard of medical clowns. I had no idea what they did. While I knew she couldn't be like other kids and go to group activities, I wondered if maybe he could see her privately again at the hospital.

I took out the card he had given me, and I found his contact info, and I emailed him, asking him if he could see Emma. That started our life changing experience with the truly amazing medical clown, Pauly.

Knowing Paul was at the hospital on certain days, Emma would ask to go to the hospital to see him. Yes, that's what I just said. EMMA WANTED TO GO TO THE HOSPITAL. Often they played after appointments, doing ring tosses, standing a feather on her hand, and trying to get that plate to spin on a stick. He was always so funny and made everyone around him laugh. She loved it and never wanted to leave.

At one point, Emma had a surgery coming up. In the past, when she has had procedures that she is put to sleep for, we have always given her Versed. While this works great before surgery, at making her loopy and takes away her anxiety, when she wakes up, it's not so great. The medication makes her very upset and grouchy, and it can take a while to clear her system.

Paul had sent me information on medical clowns, and I saw how it could help kids before surgeries. I knew that's what we wanted to try, and I asked him if he could come. Luckily it worked out. Paul was allowed to come and see her as we got everything ready for her surgery. We chose a medical clown instead of Versed.

Before, with procedures like this, I'm used to seeing an Emma who is crying, scared, not wanting to be there. I'm used to it being a very emotionally exhausting experience as her mother, watching my baby girl be so upset and not being able to save her from it.

But when Paul walked in, Emma went from being stressed and anxious to immediately smiling and happy. He went right to work and played with her. I saw her anxiety level drop tremendously. While I was explaining to nurse after nurse and doctor after doctor, all the details about Emma's little life that they needed to know, Emma was distracted and happy. She usually cannot stand hearing all the health issues explained and re-explained. She's a little girl who just wants to be normal. So to have to hear all those details SO OFTEN is upsetting to her. Plus, I never seem to get to share any of the other details about her - that she's a little girl that loves to jump on the trampoline, she loves to do front flips, she loves to color, sing, dance. She loves being a big sister and her family is so important to her. When she's better, she wants to go to Disney World. She wants to go down a water slide. She wants to see the Northern Lights.

Instead, all that we focus on is all the "negatives" about Emma. Understandably, it's not fun for her.

However, with Paul there, she didn't bat an eye about the things they were asking me or things we were talking about. She was too busy laughing and playing. There were times when different doctors and nurses needed to listen to her and check her out, and while she initially resisted, she allowed them when Paul encouraged her (with just a little eye roll, in protest, towards the doctors). Then when it was time to go, Emma walked hand in hand with Paul to the room where she was put to sleep. Instead of screaming and crying and clinging to us, I heard a soft little, "I'm scared," as she fell asleep. The difference in her, when Paul is around, is astounding.

As a mother, I watch it all play out in front of me. I'm more on the sidelines when Paul is there. There is a huge burden lifted from me in protecting and caring for her because I see that she is okay. Whatever is happening with this medical clown is changing our whole medical experience...drastically.

In June, when we first arrived in Cincinnati, Emma was very quiet in medical situations. She refused to speak to doctors and nurses, just as she had done for the years prior to coming here. It was the one thing she could control, and she used it often. I knew that was what she was doing, and I protected her right to do so. If she didn't want to talk, she didn't have to. Luckily the medical personnel at Cincinnati Children's are fantastic. Their goal wasn't to force her to talk, it was to gain her trust enough that she would feel safe talking to them. And, they were able to do that through Paul the medical clown.

After having Paul visit her often, she has opened up so much more. Her anxiety has fallen off of her, and her little walls have fallen down. For the first time in ten years, I got to see Emma talk, almost non-stop, to the nurses and even the doctors. This little girl, who appeared so scared and shy before, was a chatterbox. Just with regular interactions with Paul, it affected how she reacted to her whole medical experience as a whole.

However, when transplant started, so did more extreme restrictions for obvious and good reasons, except for one. Paul wasn't allowed to come.

I suppose this seems like a small, trivial thing to some, but having seen the "magic" that was worked on Emma before her transplant, it was a huge change for us. Emma's walls started going back up. She started refusing to speak again. She would ask for Paul, only for me to say that he wasn't allowed to be there. Thankfully we were able to see him during some of our OT/PT appointments, but we definitely missed being able to call on Paul should Emma be having an extra stressful day and needed someone to help pull her out of it.

We've never been to a hospital as incredible as Cincinnati Children's. The quality of care here is truly astounding...from the nurses to doctors to medical clowns. We are "clownies" now (That's a real term, right? Fans of medical clowns!), and we think it's a real show of compassion for Cincinnati Children's to come equipped with them. Our only hope is that the role of medical clowns will be investigated more, and they will become a regular option to families, should they want that service. I've seen him interact with other kids, and they almost all react the same. They are very intrigued and interested and end up laughing. Their worries and fears melt right off of them. I would love for us to have had the choice to have BMT medical clowns that could come see Emma and help reduce her anxiety with some laughter. I would love to ALWAYS have the choice of a medical clown in place of Versed.

The work we've seen Paul do is beyond words. When we go back home to Texas, we are changing hospitals. We don't even bat an eye at the fact that we'll be leaving her hematologists, that we've had for seven years, in order to do so. We want a hospital and medical staff that is as much like Cincinnati Children's as we can get, including one that has medical clowns because they mean that much to her...and to us.

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If you want to read more details about medical clowning and what they do, here's a good blog entry about it (the photos are of Emma back when she still hair her rainbow hair!). And, if you're local, you can go to an event Paul is having:

Free Clowning Workshop
Thursday, October 3 from 6 to 9 pm
at Circus Mojo (322 Elm St in Ludlow, Kentucky, 41016)

Here's the link:
http://goodthingsgoingaround.com/children-2/circus-mojo-is-building-medical-clowning-training-site/

1 comment:

  1. WOW, this is sooooooo impressive and THANK YOU for taking the time to share about this experience. You are a real role model yourself!

    ReplyDelete