Glycogen Storage Disease – StarchWars

A Family Disease

Posted on 18. Mar, 2007 by Jillian in Education, GSD Resources, Glycogen Storage Disease, Glycogen Storage Disease Type 1A

When a child has a rare, life-threatening disease like Glycogen Storage Disease, it doesn’t just affect the child or even his immediate family. It touches and alters the lives of extended family as well. For instance, last week when our GSD boy #3 was in the hospital, my husband needed to stay with him 24 hours a day to coordinate his care. The nurses and even our new pediatrician had never seen a child with Von Gierke before, nor will they be likely to ever again unless it’s one of our kids. He needed to make sure everyone was on the same page, which is a full time job. Since he was there and couldn’t leave, we had to rely on our family, mainly our parents to bring food up to his room for the five days our son was admitted.

On the other hand, it isn’t possible to be in good control of three other GSD kids at home by myself- let alone when they get sick too. All last week I had a member of the extended family staying the night and helping. First, my mom, then my sister-in-law, and then my mother-in law. All of them helped keep an ear out for faulty machines, alarms for the 10pm, 2am, and 6am starches, plus cleaning up various bodily fluids (thank you Mister RotaVirus), checking blood sugars, making sure g-tubes didn’t kink etc. I could never have done it by myself, I sincerely appreciate all of the help so I could get some sleep.

I also am also learning how to “use” various family members without “using them up”. For instance, i use my sisters who are both Speech and Language Pathologists to answer sporadic questions about my children’s development, referrals for good therapists in the area, etc. “Aunt Leslie” has also gone over the top in helping me advocate for my older two sons. I am very passive by nature, and fighting an authoritarian figure such as a principal is very difficult for me, even when I know that it is my sons’ right to receive certain services. It’s amazing to me how true the adage “the squeeky wheel gets the grease” is.” Then I ask my brother (in law school) whether certain laws pertain to my children, in this state, etc. My other sister is excellent at creating new sucrose, fructose and lactose-free recipes. Two of my husband’s brothers are still in high school and pros at g-tube feedings now. We love to “use” them and my mother-in-law as babysitters since we can’t trust a neighborhood teenager with this much responsibility. My ten year old sister-in-law is a wonderful “mother’s helper” and can keep the boys very entertained while I get a few chores done on Saturdays.

The list goes on and on. My point is, if my husband and I tried to do this on our own, we would have burned out long ago. Also, if we’d tried to just use one family member for everything, that poor family member would be toast too. “Using” each family member for their particular talents, taking into consideration how much time they have to devote and how much they sincerely want to help is an essential talent I am still developing.