March 10, 2012 mcfadyena

A Deep Sigh of Relief

I wrote this blog in January, after Trey and Ryan returned from Trey’s third  intrathecal dose of enzyme. I wasn’t sure about posting it, but now I am. In the past two monthes, I have stopped fighting MPS & it has brought incredible relief and brought back my ability to enjoy Trey and life, completely:
Ever since Trey’s diagnosis, I’ve been fighting MPS II. Mostly the ‘brain is affected’ part of MPS II- I can accept that my child will have physical issues, but I cannot accept that my child will die before me, during which time I will be forced to watch him lose his skills and personality- but when you don’t know if your child’s brain is affected, they’re one and the same.
When a child with MPS II gets diagnosed, unless they have obvious cognitive delays and behaviours, it is unknown ‘if’ their brain will be affected. This can lead to a lot of… disharmony. Until you know definitively which path your child is taking, you are basically praying/begging/hoping their brain is okay. Before we knew which path Trey was on, I hoped that any ‘behaviours’ I noticed were Trey’s and not a result of his brain being affected. For example, Sadie screams for hours a day (I’m not joking, she’s like a colicky infant the majority of days, one who leads us to get regular stares in public), fighting tooth and nail to do things herself; when, how, where and why she wants to. Avery is… quick, to become angry. He can go from happy to ‘I want to stab you in the heart with a knife’ in a millisecond. However, because they don’t have MPS II, I know those qualities are theirs and not an indicator that they are going to die between 10-20 years of age. I know that it is my job as Avery and Sadie’s mum, to help them learn how to take a deep breath, cool down, and use words, respectfully.
With Trey, however, it’s been a little more complicated. For six years of Trey’s life (he’s almost 8, but was diagnosed just before his second birthday), I’ve been fighting part of Trey. For four and a half years after diagnosis, all I did was hope and pray, and work, to the best of my abilities, with what we hoped were Trey’s own personality traits. For me, any behaviour (even accidentally peeing the bed at night or a hit to Avery because Avery grabbed a toy) that ‘could’ indicate brain decline sent me into panic/fear mode, and as a result, would lead me to do almost anything to quell the behaviour.
Then we found out Trey’s brain is affected and we realized that some of his behaviours were those of cognitive decline, not his own. BUT, there was this trial that gave us hope. So, for the next year, we dealt with increasing behaviours, hoping that Trey would get into this trial that would help him get better. Now he’s in the trial, and I’m still fighting.
Trey and Ryan came home from UNC yesterday. When Trey gets excited or has been inside & mellow for too long, he gets… I like to say, antsy. It is obvious he needs to run around or go outside. He’ll start spanking you, bumping you, drumming or hitting anything (counters, pots etc.) with drumsticks or anything else he can find, ALWAYS close to you. If you’re not used to it or if, as a parent, babysitter, family member or friend, you’re trying to correct it and model ‘appropriate’ behaviour, those acts often get… annoying.
I’ve been thinking about this a lot recently. What constitutes ‘appropriate.’ I read a post on Facebook by a dad whose son has MPS III: “Love this little guy, I don’t care if he never progresses past a three year old and I watch Dora for the rest of my life. Help me keep him around. Ask your congressman to support ultra by going to”
Melissa Hogan’s blog also gave me thought: Although Case and Trey were quite different as youngsters and I haven’t found the need for most of what Melissa’s blog talks about, this one hit home: “Do they repeat a behavior only minutes after you’ve clearly told them to stop? Is the behavior akin to breathing for them, they need to do it so much? Depending on the answers to those questions, certain behaviors simply need to be managed instead of disciplined or prevented, although we can often try to prevent the triggers of certain behaviors.” Trey’s spanking and loud noise making seems to be a NEED.
While I sat and watched Sadie and Avery and Ryan and Trey play last night, I had an ‘Ah-ha!’ moment. Instead of Sadie and Avery whining ‘Stop Trey!’ while they were trying to quietly read a book and Trey was drumming next to their ears, they went with it, or drummed along for a moment before going back to reading. Instead of Ryan disciplining Trey when Trey would spank Ryan while he and I were having a serious conversation, Ryan would stick his bum out farther. When Avery and Sadie were playing a game and Trey wanted to be involved, but instead of asking ‘appropriately’, he would hit them as they ran by, Avery and Sadie would stick their hands out for a high five instead of whining that Trey just hit them.
Because of this IT drug, it is possible Trey may not continue to NEED to do these things. But it is also possible that he will. So instead of constantly trying to correct or change or discipline these behaviours, and fight MPS II (and Trey), which feels like banging my head against a wall, and even more, feels awful, we are going to work with them. We are going to find ways, just like we do with Avery and Sadie, to accept our differences. And that, gives me a deep sigh of relief.


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