Yesterday, we sent Warren off to a camp for kids with IBD - Crohn's and Colitis, mainly.
Yesterday, I took my dad a late lunch.
Neither of these things were my favorite things, to say the least. The people? Yes. I LOVE those people. My son is awesome, my dad is a superhero. The situations they are in? Suck.
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At the camp drop off, Warren was a nervous wreck. He'd be spending four nights away from his family with complete strangers. But there is no support group for kids with Crohn's, and this camp was highly recommended. And so we signed him up. He wanted to go, but was scared - naturally - as any kid would be. We didn't have to search long to find a boy in the same situation. We introduced the two kids, and the parents began to talk. Both our sons had been recently diagnosed. Neither two cases were alike. We spoke of drugs, and fears, and how we should be happy this is "all they have" compared to other things that could be wrong - you know, keep it in perspective. It's odd to instantly connect with someone, but comforting to know that there are people feeling exactly the way you do. "I read so much, and then it scares me, so I put it away," I shared. "Me too!" she echoed. Commiserating over trying to educate ourselves and make the best choices for our children's treatment we both admitted to needing to learn to take it just 'one day at a time'. One procedure. One treatment. One GI appointment.
The counselors and staff were absolutely amazing at the drop off. Almost all of them have IBD, and a large portion of them have been campers themselves. Boys came up and introduced themselves to Warren and his new friend and talked about how fun camp would be. They spoke directly and easily about their diseases. "What do you have? Crohn's? Me too. Doing Humera? Remicade? I've done a few of those treatements. Had some joint pain. All good now. In remission at the moment." And on it went. These men, these boys - all 'normal' and ready to go to camp and do archery and ziplines and ride horses, welcoming my son into their fold.
By the time the bus pulled away, Warren seemed much more relaxed. He so needs this. He needs to find a community for this. He is not alone. But, justifiably so, he is done with talking to his parents about stomach pains, joint pains and pooping. And last week was a rough one - my dad in the hospital and a classmate's sudden death - Warren just needs some time to chill.
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Dropping off food for my dad, I found him resting on the couch, looking - well, looking like he did in the hospital last week. He's thin. Oh so thin, and he's tired. Its hauntingly familiar to how he looked post stem cell transplant - and that was after so many many rounds of chemo. It was just a month ago he was mowing the lawn, laughing and joking, and even playing golf on Father's day. And now this? This setback - which is all it is - I know that - is so unfair.
I set up his food, and cleared off the remnants of the many options Bonnie had offered him that day. "Every time she comes in the room she's bringing me something to drink and something to try and eat that damn nurse ratchet!" he declared, but laughingly. "That's what she's supposed to do dad," I replied and made a mental note to be even nicer to my wicked stepmother, becuase um yeah, I'm sure he's not so nice all the time. The new medications he's been given to fight the nausea and to increase his appetite have him feeling woozy, so, he's trying to do without the appetite pill and just willing himself to eat more. He ate about a toddler's portion of what I had brought, and said he could eat no more.
"This isn't fair dad," I said. He responded with a "nope - this really sucks. There's some sort of war going on in my body." While watching a race and the ballgame, we hoped the lab results would give some sort of answer as to what is going on. And that the answer prompts a response to fix it, and fast.
Last week, my dad was supposed to go back to Big Barnes, to the floor of the hospital where he had his stem cell transplant, to lead a walk through the halls. A walk celebrating Be The Match; the organization responsible for linking him to his donor - and saving his life. He was to be the grand poobah (if you will) of this parade to help encourage the patients going through the same thing he did. The video would be used to inspire others to register for Be The Match and to attend the walk. Instead? He was in the hospital.
To say he's a bit pissed at his current situation is an understatement. He's angry, and sad, and mad - and he has every right to be all of these things. But in addition to that? He's still a fighter. Still my superhero dad that he's always been.
He'll get through this.
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Yesterday's events will be a distant memory in no time. Yesterday is over, and today is a new day. Tomorrow will be a new day as well.
How was the camp?? Where was it? Highlights??
Posted by: Michelle | August 09, 2014 at 04:11 PM