January 10, 2011 mcfadyena


My family and friends who are close enough to know the day to day goings on in my life often hassle me for taking on too much. Today made me think about why I do that.
Today, Ry, Trey and I met up with two families who are down here for their IT infusion. Case is a 3 YO who just got his first infusion last Tuesday. His mom, Melissa, and I have been in touch over email and phone, but never met. Elijah is 6 YO and getting his 8th infusion tomorrow. I met him, his mom Brooke and his Papa last time we were here in August.
For those of you who are parents of ‘typical’ kids, you know when you meet someone at the park or talk to a friend whose child is also going through the same thing as your child? Whether it’s teething, hitting, ‘potty training’ or any of the other million stages our kids go though? You can compare notes, get ideas, vent…
With Trey, I have no one to do that with. Hunter Syndrome is rare. There is no one who lives near us with Hunter Syndrome. As a result, talking with Melissa and Brooke is like… well, an emotional release. Like a pressure cooker when you finally take the lid off. We were able to compare notes, ask questions, exchange ideas. Oh, Case does that too? Does Elijah do this? Etc Etc Etc. I also don’t have to explain Trey. My life at home is about explaining hearing aids, VAD’s, infusions, speech delay, his quirks with conversations, going to the bathroom, routines and on and on. With Melissa and Brooke, I don’t have to explain anything. I can relax. We talked for 3 hours while Ryan ran around and played with the boys. It was sooooooooooo cathartic and wonderful.
In addition, their boys have had IT drug. What we’re here to be assessed for. I was able to hear specifics about the infusions, what it’s like, if they notice differences in their children. I also got more information about where the trial is at, how it’s progressing… information about how the port is working, hiccups that have occurred, and timeline. With a progressive disease, time is of the essence. While Melissa and Brooke were sharing their wealth of trial knowledge with me, what kept running through my mind is that this whole trial, especially the timing, is out of my control and it’s scary. Really scary. Life or death scary. The timeline has always been incredibly important in my mind, but now that we’re this close, it’s like we’re getting closer to game time. And the lid has been put back on the pressure cooker.
So that’s why I get busy, why I distract myself. So I can stop thinking about scary things for a few moments. It’s how I cope. I do yoga and I’ve started learning about meditation, chanting and mantras, so I can face my life head on, but sometimes I distract myself. It may look like I’m taking on too much, but sometimes that’s what I need to get through. It helps me to stop thinking about what is coming that is completely out of my control. Especially when it comes to this trial.
Brooke and Melissa, it was AWESOME to see you today. Thank you for sharing yourselves and your experience and your wisdom. I look forward to seeing you all again!!


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