I have heard it said that to experience great joy, you must first experience great pain. I’ve been thinking about this a great deal lately. When we moved, I think it was Aimee, that said, “it will be nice for Grant to start over and not be known as the ‘sick kid’ there.” I was excited about that idea. I wanted him to just be normal, like it never happened.
But you all know I don’t do secrets. I am an open book – too open most of the time! Over the last few months as we would meet people and whatever in the conversation sparked something about ‘the sick kid’ I’d bite my tongue and not mention it. I’m not good at that. I felt like I had a dirty secret.
Grant wasn’t aware of my conscious decision to keep quiet and he proceeded to tell his entire class within the first few weeks of school. They were discussing cancer and he stood up and declared that he had cancer and even lifted his shirt to show his scars. So much for that secret. But even then I played it down and didn’t take it beyond his classroom.
Last week Gracie went with me to Bible study and I think it was divinely inspired for her to come with me that night. The study is on James with Beth Moore. She was dissecting words like she often does and was drawing a parallel between the Greek words chara and thlipsis. They are translated into joy and anguish. James uses this chara word in verse 2 of chapter 1 “consider it a great JOY (chara)…whenever we experience various TRIALS (thlipsis).” Beth drew the connection between James and Jesus’ teaching in John 16:20-24. The anguish (thlipsis) is meant to lead to a birth based on what Jesus said. Birth of what? JOY! It was very clear to me that this joy comes out of the anguish. The great joy cannot exist without the anguish. In fact, the two can even co-exist. The source of anguish – in our case, Grant’s disease – the worry, the fear, the uncertainty, the dread, the feeling of being on a desert island of rare disease; all of that was anguish. But in that we found so much joy. The joy of seeing people come together in support, the joy of finding wonderful friends on this desert island, the joy of wonderful caregivers in a perfect environment for children, the joy of remission, so many joys. Many of those joys simultaneously exist with the anguish. We love Scottish Rite, so often we were all looking forward to treatment day because it meant – no school, good lunch at a restaurant, special time with just mom and/or dad, shopping on the way home, clowns, treats, giggling with Dr. Rapkin, so much joy. Simultaneously existing in our anguish. Something that impacts you with such anguish and such joy cannot exist without creating a passion. Think of things you are passionate about, I’d venture to say that you have experienced some severe anguish or great joy causing you to be passionate about whatever it is. The birth that comes from anguish is the joy in passion.
So this explains why my dirty little secret was bothering me so. It was squelching my passion to be quiet about our history. I gave myself permission to let my secret out that night. Not that it would have been much longer anyway! You know I’d have either exploded or cried soon because I just don’t do secrets. That very night I was looking at the website for Rare Disease Day and the events we are attending in New York City in a few weeks. This event and day are all about raising awareness – sharing our secret. Duh, how did I expect to raise awareness without talking about it?!?! I was thinking we’d go and enjoy our time and hold our pictures outside the Today Show to raise awareness for everyone watching, but I wasn’t going to tell our neighbors. I was looking forward to hanging out with other histio families – yeah that doesn’t do a whole lot for raising awareness – they are pretty aware! So I am talking – big time. I sent an email with a link to the science curriculum to Gracie’s science teacher. Come to find out, she is passionately involved with Cure for Children’s Cancer and is very excited about making February 29 Rare Disease Day in her classroom and hopefully throughout the school. I shared with her our story and it felt good to let it out. I also shared it with Grant’s teacher and others since then. It makes it easier to have a reason (Rare Disease Day) to talk about it.
I don’t want him to be known as the Sick Kid. He’s not, he’s known as the silly boy who has a crazy laugh. It’s my passion, not his. My passion isn’t to make him sickly or to even have him be mentioned. The passion is to help others that have been in the same anguish filled boat, and from that, giving them an opportunity to experience joy.
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