http://www.starchwars.com/2007/03/a-family-disease/ Glycogen Storage Disease Wed, 20 Jul 2011 15:08:47 +0000 hourly 1 http://wordpress.org/?v=3.2.1 http://www.starchwars.com/2007/03/a-family-disease/comment-page-1/#comment-5 Bonnieanne Mon, 26 Mar 2007 22:14:02 +0000 http://starchwars.com/control/lib/blog/2007/03/18/a-family-disease/#comment-5 As an extended family member to 4 young nephews with GSD Type Ia, I'd like to send in my agreements that it truly is a "family disease." But not just in the negative ways. While there is much to do to ensure the good health and even life of those little boys (which can be physically and emotionally exhausting, and I don't even do it every day!!!) which can surely stress out many members of the family, there are so many positive associations as well, even if they take some time and effort to be seen. I truly believe that a disease like this, and with so many in my own family, it brings everybody together. It has to. My brother sister-in-law CAN'T do it alone. They'd go nuts; and I've seen them get awful close, and it's no laughing matter (although we still managed light-hearted jokes at 2AM feedings. Who are we?!). And certainly my love for those boys grows each time I've sucessfully gotten their starchings taken care of, or made it through the night with everyone's blood sugar where it should be (we'll leave out the part where I didn't get sleep). And again, I've only done it a few times. If I had to do it everyday like they do, I...well, I'd be tired, I guess. But being tired makes you more vulnerable to very human mistakes, like sleeping through a very important alarm. It's cool to watch my entire family jump up to help for what wouldn't be a problem in normal families, but is a dire concern in ours. We're getting better and better at recognizing what they are, without them having to ASK for help all the time. They shouldn't have to ask all the time. They got that gene from their family, and so we're obligated to help. :) Minimal complaints - we're getting better all the time - and even smiles in the midst of struggle. If trial doesn't bring a family together, I don't know what does. As an extended family member to 4 young nephews with GSD Type Ia, I’d like to send in my agreements that it truly is a “family disease.” But not just in the negative ways. While there is much to do to ensure the good health and even life of those little boys (which can be physically and emotionally exhausting, and I don’t even do it every day!!!) which can surely stress out many members of the family, there are so many positive associations as well, even if they take some time and effort to be seen. I truly believe that a disease like this, and with so many in my own family, it brings everybody together. It has to. My brother sister-in-law CAN’T do it alone. They’d go nuts; and I’ve seen them get awful close, and it’s no laughing matter (although we still managed light-hearted jokes at 2AM feedings. Who are we?!). And certainly my love for those boys grows each time I’ve sucessfully gotten their starchings taken care of, or made it through the night with everyone’s blood sugar where it should be (we’ll leave out the part where I didn’t get sleep). And again, I’ve only done it a few times. If I had to do it everyday like they do, I…well, I’d be tired, I guess. But being tired makes you more vulnerable to very human mistakes, like sleeping through a very important alarm.
It’s cool to watch my entire family jump up to help for what wouldn’t be a problem in normal families, but is a dire concern in ours. We’re getting better and better at recognizing what they are, without them having to ASK for help all the time. They shouldn’t have to ask all the time. They got that gene from their family, and so we’re obligated to help.
Minimal complaints – we’re getting better all the time – and even smiles in the midst of struggle. If trial doesn’t bring a family together, I don’t know what does.

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